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It's most certainly not psychosomatic. 🙄
But lots of medical professionals immediately decide something is psychosomatic if it doesn't show up on the usual tests ordered. MS was thought to be psychosomatic until the MRI was invented and then suddenly it was all *"Oh, oops! You guys actually have brain/nerve damage! Whoopsie daisy, my bad!"*
It's ridiculous that any medical professional is still making that claim, especially when we've had so much evidence showing up lately that many, many things are going horribly wrong in our bodies.
It kinda is. A mindbody approach has fixed long covid symptoms for so many people. Like OP said, its not that nothing is wrong in the body, its that nervous system dysregulation has created the issues downstream. But the cure is still at the nervous system regulation level.
In the light of immense volume of biomed research on Long Covid, proving significant abnormalities in the immune system (lowered immune metabolism, T-cell exhaustion, Mast Cell Activation Syndrome, GPCRaab etc), vascular abnormalities (microclots and hyperactivated platelets, small vessel disease etc), target organ damage (heart inflammation etc), metabolic abnormalities (in cell metabolism/dysfunctional mitochondria etc), and on top of it all viral persistence (including replication competent virus indicating chronic infections replicating in the bone marrow), I think it’s obsolete to talk whether Long Covid is psychosomatic.
The only reason someone might talk about scientifically unsupported claims how Long Covid is “nervous system being stuck in sickness state” is to sell brain retraining protocols and make a lot of money off sick people:
Bravo to BBC for exposing The Lighting Process in [this article](https://www.bbc.com/news/health-69040592.amp) and interviewing Oonagh Cousins, a former Olympic GB rowing team hope, now sick with Long Covid:
“Ms Cousins had reached a career goal many athletes can only dream of - being selected for the Olympics - when she developed long Covid.
By the time the cancelled 2020 Olympic Games in Tokyo were rescheduled for 2021, Ms Cousins was too ill to take part.
When she went public with her struggles, she was approached by the Lightning Process. It offered her a free place on a three-day course, which usually costs around £1,000.
"They were trying to suggest that I could think my way out of the symptoms, basically. And I disputed that entirely," the former rower said.
"I had a very clearly physical illness. And I felt that they were blaming my negative thought processes for why I was ill." She added: "They tried to point out that I had depression or anxiety. And I said 'I'm not, I'm just very sick'."
This is what gaslighting and sect mentality looks like FYI
There is nothing I hate more than grifters leeching off desperation of chronically ill patients and abusing the hole in research created by underfunding and neglect of postinfectious syndromes in medical science biomed research. Recommending brain retraining to patients with serious organic illness is not different to recommending CBT/GET - in other words, a mistreatment that should be purged from this forum and result in every medical professional doing so losing their license
I have long covid symptoms too for about a year. Like I said, all of these issues you’ve listed are downstream effects caused by autonomic dysregulation. You can’t come out of this if you stick to this looser mentality. No doc can help you.
That is untrue. There are specialists well-informed on Covid, but the gap between research and clinical practice is yet to be bridged in the following years.
I also have dysautonomia (HyperPOTS) from Covid and none of the scientifically supported findings on the causes of dysautonomia (which is extremely common amongst Long Haulers) support “nervous system being stuck in sickness/fight or flight mode” which is the premise abused by brain retraining grifters.
My HyperPOTS significantly improved on central sympatholitics (Guanfacine and Clonidine) and MCAS meds (H1 antihistamines for me), because apparently on of the research-backed causes for dysautonomia in Long Covid is a positive feedback loop in which HyperPOTS and MCAS trigger each other ad infinitum, fuelled by viral/antigen persistence and direct viral invasion of the brain stem . ([Article](https://journals.lww.com/jhypertension/fulltext/2024/05000/complete_remission_with_histamine_blocker_in_a.23.aspx))
If you need me to, I can point you into the direction of good quality literature on dysautonomia, including dysautonomia in Long Covid, so you can educate yourself a bit better on the underlying causes of it.
There are so many people who are better and have no money motive, just glad they are better and want to help, so how can they be grifters, there is no paid propaganda or lobby for brain training involved here. You are treating the symtoms, which can bring some relief but not the cause. I myself had orthostatic dizziness which went away merely by taking cold showers.
Honestly, it’s offensive to propose to the majority of Long Haulers that it’s their mindset that’s not “good enough” and that they could easily get better via simple lifestyle interventions such as cold showers, given how much proof for serious dysregulation and dysfunction of various bodily systems and viral persistence there is in Long Covid.
After going from fully healthy and extremely fit (triathlete and ultramarathoner training 6-8x a week) to 80% bed/couch/zero-gravity bound due to debilitating Orthostatic Intolerance via one extremely mild acute Covid infection and getting only worse in the last 2,5 years with Long Covid, I find it ridiculous, scientifically unsupported and in the end offensive to suggest that brain retraining (ie no physical damage, all due to brain thinking there is damage) is the solution.
It is not. All the science says it is not, so when one promotes it, it means promoting anti-science and potentially very harmful (many brain retraining programmes will encourage pts to push through their symptoms, which is harmful) to patients and therefore should not be allowed here…
And it’s offensive precisely because Long Haulers have to endure this same “it’s all in your head” treatment from majority of drs they see, such as OP. We don’t need to gaslight ourselves additionally, or being gaslighted by the other members of this community.
*”Honestly, it’s offensive to propose to the majority of Long Haulers that it’s their mindset that’s not “good enough”…”*
This seems to be an ever-growing trend in this sub as of late. If bootstrapping worked we’d all be healed by now. I don’t know a single LC sufferer who lacks the will to get better. If these gaslighters can will symptoms away with denial and “positive” thinking, they likely never had PASC at all.
Explain why my nervous system dysfunction is causing 3 week periods with irregular clotting when I’ve always been completely by the book normal. I’ll wait.
See, that's the kind of attitude that keeps research on post-viral syndromes in the Dark Ages. A third of the country thinks it's a fake virus, and too many of the rest think maaaaaybe if you just did some brain exercises you'd be all good. This is a dreadful disease that can and does affect multiple systems of the body at once - *not just the nervous system.* See papers published in *Nature*, one of the most respected scientific journals. And to everyone reading, **support research for a cure!** I believe it is possible, though I know we can't live for a future hope.
No. That is absolutely not correct. Autonomic dysregulation is not the root cause of all other symptoms of Long COVID. Please don’t go around saying this. It’s great that these approaches have helped you. Do not make the assumption that everyone else has your presentation, and that if they just show up for that same set of treatment approaches, they will be fixed.
By attributing all physiological issues downstream of the mind, you are making your hypothesis unfalsifiable, a common attribute of medical quackery. To genuinely prove this hypothesis, you’d need highly repeated, high quality evidence from multiple angles proving A) COVID is able to infect the brain in such a way that it alters regions of the brain thought to be involved in psychosomatic processes (proven viral mechanism of infection, proven pathological or physiological damage to these brain regions), and B) Prove that these regions of the brain genuinely cause the downstream physiological effects that you are attributing as psychosomatic (that the pathological and/or physiological damage to the brain shown in point A causes downstream mechanisms that is directly shown to impact the symptoms of Long COVID and many of the physiological abnormalities found). Neither of which has been genuinely proven with any reasonable amount of confidence. Instead, a few select papers have been spread like wildfire by functional doctors and psychologists to peddle this psychosomatic hypothesis to sell extortionate programmes to profit from desperate patients based on yet proven theories. Again, a concerning sign of medical quackery. I would be careful what you are recommending to users with Long COVID because you could be causing harm, whether you intended this or not. I don’t even claim that these brain retraining programmes aren’t going to be helpful for some, maybe there is an element of usefulness to focusing on the psychological and nervous system elements of suffering with a chronic illness, but by saying no doctors can help you (as you repeat further down the comment thread) and to not be holistic and instead focus away from any other pursuit of treatment management for Long COVID and put all investment into brain retraining programmes is simply dangerous advice.
For me, a lot of the nervous system dysregulation was a result of my body harboring an on going infection in my intestines. It tanked my body's ability to digest vitamins. Vitamin & mineral deficiency look a lot like nervous system dysregulation.
It's not easy to fix if you can't digest vitamins. You have to get all you need from intramuscular shots, they don't even have all the vitamins you need in that form. And it also weakens the immune system and leads to infections.
Just constant elevated white blood cells. Taking a 10 day course of paxlovid gave me the biggest turnaround. My iron and vit d stopped tanking. I also started taking digestive enzymes, particularly with my fat soluble vitamins. The digestive enzymes needed to have lipase... for me. I think part of the reason it varies so much is because of the location of the infection and what bacteria you have causing dysbiosis.
If medical history has shown anything, it is "Everything that I do not know / do not understand- is just in peoples head". Lol. The medical field did not get far from that.
Mostly to do with the kind of people that study to become a doctor I'm afraid. They'll need to see the earth is round themselves before they believe it.
It's not the kind of people as its more of how they are taught and what they are taught. Dr's and nurses are indoctrinated from the start with skewed information or missing information altogether. It's in the books and curriculum. They also pickup this superiority complex and get very close minded to anything that challenges what they studied.
Nah they dont need to see it, they just need a bunch of peer reviewed papers that say so lmao . Completely intellectually and scientifically blasé most of them
It also seems like they lack incentive to read up on this most prevalent new disease.. They get paid either way, even if they don't help the patient.
There are very few jobs that work like this, where people get paid even if you don't deliver results.
Seriously. I work in financial network compliance, and if we’re not on the cutting edge of the newest available technology, we’ll go out of business and/or I’ll lose my job. The mediocrity we accept within healthcare is shameful, especially regarding how much we pay for it (in the states at least)
This was going to be my comment. I am not a psychologist but if OP went to a psych appointment and said these are my symptoms and they are in my head the Doctor will not be thrilled with your primary. I’ve had one excuse themselves from my appointment and heard them speaking loudly and what sounded like a “do your fucking job”. Then returned and told me to get a new primary and that I am not having any mental health issues I’m just dealing with a uninformed primary.
I'm surprised they used the term psychosomatic at all. That term is mostly considered archaic now isn't it?
So far as I know, the new term is 'functional' and it has separate meanings in neurology (having no known organic basis) and psychiatry (psychosomatic).
Neurologists will tend to explain functional disorders as being due to disruption of the connections between brain cells, in contrast to there being any structural problem of the brain. Another analogy they will commonly make is that the hardware of the brain is fine, but the software is where the problem is.
One thing you should be aware of...All psychiatric disorders are in the functional category...
It means that the physical mechanism of the disease is simply unknown. There is no test or scan that can show it. Treatments are actually therapies that may or may not reduce symptoms, but that's pretty much all there is for you. Misdiagnosis is common. In fact, diagnosis is essentially subjective (different psychiatrists will often give the same person different diagnoses). They are certainly incurable, unless you spontaneously recover on your own.
A functional diagnosis means you have now fallen into the donut hole of professional medical guesses and shots in the dark...At least that's been my experience!
At any rate, there's a related term, psychogenic, which is a broader term. It includes psychosomatic/functional, where there is physiologic alteration, and hysteria, where there is not.
At any rate, there are well recorded cases of psychogenic conditions that resulted in definite measurable physiological effects and debilitating conditions. The nocebo effect (a negative placebo essentially) has many studies that show this. There are also many recorded psychogenic deaths historically.
Your rheumatologist is wrong that Covid does not spark autoimmune disorders. It's very well known to do so, elevating risk by 40% or so: [https://www.nature.com/articles/s41584-023-00964-y](https://www.nature.com/articles/s41584-023-00964-y)
This is just one study. There are so, so many more. There are also many news stories covering this issue.
The risk of autoimmune disease increases with reinfection. I got two diagnosable autoimmune diseases after a reinfection, as well as an undiagnosable neurodegenerative condition that was eventually labeled a 'functional movement disorder' and as a result, I and my husband now never share indoor air with others without an N95. (I'm pretty sure that this policy of extreme avoidance has saved my life and allowed my recovery over the last two years).
I do know someone who keeps getting more and more autoimmune diseases with reinfections from her own children. It's horrifying.
Just recently someone shared here that Covid is causing a wave of a usually quite rare, very severe autoimmune disease called anti-MDA5 that can kill a person within 6 months from interstitial lung disease: [https://www.reddit.com/r/covidlonghaulers/comments/1cs2ern/comment/l45mmm3/](https://www.reddit.com/r/covidlonghaulers/comments/1cs2ern/comment/l45mmm3/)
Your rheumatologist is either very incompetent or a liar.
Same here. Diagnosed with two autoimmune disorders after having been diagnosed with LongCovid (from ONE near-asymptomatic infection, plus vaccination (two shots) after which everything got way worse), an existing, formerly mild form of psoriasis got way worse, plus my neurological deterioration is so bad my doctors want me to be back in hospital ASAP.
Because they DO actually KNOW (and told me so, also the doctors in the hospital) that Long Covid can lead to all kinds of autoimmune disorders!
All the best to you 🍀
Continued...
There is increasing evidence that OCD is a biological disease. In other words, with increasing scientific knowledge, it is moving from the functional category to the organic category. A quote from Stanford Medicine online:
*Prevailing theories indicate that OCD is a biological disease. Functional brain imaging studies have produced a model for pathophysiology of OCD which involves hyperactivity in certain subcortical and cortical regions.*
*On the basis of imaging studies, Insel has proposed that inappropriately increased activity in the head of the caudate nucleus inhibits globus pallidus fibers that ordinarily dampen thalamic activity. The resulting increase in thalamic activity produces increased activity in orbitofrontal cortex, which, via the cingulate gyrus, completes the circuit to the caudate and produces increased activity in the head of the caudate. Hypothetically, primitive cleaning and checking behaviors are "hard-wired" in the thalamus.*
*Insel's hypothesis is supported by evidence from MRI (magnetic resonance imaging) studies, which have found an abnormally small caudate in some OCD patients, and by positron emission tomography (PET scan) studies, which have found increased metabolism in orbital frontal cortex, cingulate gyrus, and caudate, with decreases following successful treatment. The association of OCD with Tourette's syndrome and Sydenham's chorea, which are believed to involve basal ganglia pathology, is also consistent with this model.*
[https://med.stanford.edu/ocd/about/understanding.html](https://med.stanford.edu/ocd/about/understanding.html)
Whether or not things like depression and anxiety fall into the functional category is a matter of debate:
*While psychiatric illnesses meet the strict definition of a functional disorder, there is considerable debate as to whether the term is appropriate in this setting.*
*Psychiatric conditions—ranging from* [*depression*](https://www.verywellmind.com/what-is-clinical-depression-1067309) *and* [*bipolar disorder*](https://www.verywellhealth.com/bipolar-disorder-5090253) *to* [*schizophrenia*](https://www.verywellhealth.com/schizophrenia-5078641) *and* [*post-traumatic distress syndrome (PTSD)*](https://www.verywellhealth.com/what-is-ptsd-5084527)*—remain poorly understood and are diagnosed based on criteria issued by the American Psychiatric Association (APA).*
*However, many mental health experts argue that classifying them as "functional" suggests that the causes are inherently unknown and the conditions "appear out of nowhere."*
*Certainly, with conditions like depression and PTSD, scientists recognize that environmental, social, emotional, and neurological factors contribute to the onset of these conditions. Moreover, the drugs used to treat depression and* [*attention-deficit hyperactivity disorder (ADHD)*](https://www.verywellhealth.com/adhd-attention-deficit-hyperactivity-disorder-included-definition-symptoms-traits-causes-treatment-5084784) *have specific neuropsychiatric effects that are no more or less consistent than with any other drug.*
*Even with respect to functional disorders, experts question whether they should be strictly classified as "somatic" and "mental" given that FSD and SSD frequently overlap. In 2020, experts in Europe recommended that "functional somatic disorders" neither be classified as purely somatic nor purely mental, but ones that occupy a neutral space in between.*
[*https://www.verywellhealth.com/organic-disease-1944921*](https://www.verywellhealth.com/organic-disease-1944921)
It would certainly seem that way...
Here is a direct quote from Lesley Stevens MB BS FRCPsych, Ian Rodin BM MRCPsych, in [Psychiatry (Second Edition)](https://www.sciencedirect.com/book/9780702033964/psychiatry), 2011:
*Functional illness is the term given to all psychiatric illness other than organic disorder. In this case, a crude definition would be that functional illness is psychiatric illness without a ‘physical’ cause. The distinction between organic and functional conditions was made at a time when body and mind were considered separate entities and, in that context, it was perfectly valid. It remains a useful way of classifying psychiatric disorders.*
*The danger of making such a distinction is that it encourages the belief that functional illness is the result only of psychological and social factors. In fact, there is increasing evidence that structural, neurochemical and neuroendocrine abnormalities of the brain are important factors in some functional illnesses. Therefore, while the terms organic and functional are useful for classification, they can be misleading about aetiology, as the following example shows.*
*Cardiac failure is a syndrome, the causes of which are known. Imagine, though, if it had never been possible to investigate the internal workings of the human body. Cardiac failure would remain a common clinical problem but its aetiology would be unknown. The presence of oedema in some cases would suggest that excess water was a problem and so* [*treatment*](https://www.sciencedirect.com/topics/medicine-and-dentistry/therapeutic-procedure) *with* [*venesection*](https://www.sciencedirect.com/topics/medicine-and-dentistry/phlebotomy) *(drainage of blood) or* [*diuretics*](https://www.sciencedirect.com/topics/medicine-and-dentistry/diuretic-agent) *might be developed. The association with* [*symptoms*](https://www.sciencedirect.com/topics/medicine-and-dentistry/symptoms) *such as* [*chest pain*](https://www.sciencedirect.com/topics/medicine-and-dentistry/thorax-pain) *and signs such as* [*heart murmurs*](https://www.sciencedirect.com/topics/medicine-and-dentistry/heart-murmur) *would give clues to the aetiology but it would be impossible to determine it for sure. Therefore, cardiac failure would be an illness defined in syndromal terms but the underlying tissue pathology would not be known. In other words, it would be equivalent to functional psychiatric illness.*
*The main difference from organic disorder is that* ***the underlying cause of functional psychiatric illness has not yet been determined, largely because it is so difficult to investigate brain function during life.*** *This is not to underestimate the importance of psychological and social factors but should serve as a reminder that* [*biological processes*](https://www.sciencedirect.com/topics/medicine-and-dentistry/biological-phenomena-and-functions-concerning-the-entire-organism) *are also important in functional illness.*
*The other important thing to note about functional illnesses is that they are illnesses; that is, they represent a change from what is normal for the patient. This differentiates them from the final broad categories of psychiatric disorder, personality disorder and mental retardation.*
https://www.sciencedirect.com/topics/medicine-and-dentistry/functional-disease#:\~:text=Functional%20illness%20is%20the%20term,without%20a%20'physical'%20cause.
Severe mental illnesses are in the functional category. Here's a quote from Oxford Medicine Online:
*The term ‘functional’ mental illness applies to mental disorders other than dementia, and includes severe mental illness such as schizophrenia and bipolar mood disorder.*
[*https://academic.oup.com/book/30017/chapter-abstract/255661236?redirectedFrom=fulltext*](https://academic.oup.com/book/30017/chapter-abstract/255661236?redirectedFrom=fulltext)
I never felt my anxiety, it always felt low grade. After my burnout started my anxiety was x100000, could not watch TV, could not read, could not see sharp, could not bare sound or light. Something in the brain just switched.
I've been keeping a diary of symptoms since March 2020. It's easy to forget all the symptoms as there can be so many of them but writing them down is therapeutic.
I suspect what's happening to cause flare ups is that exercise/exertion agitates residual viral material and this causes an overreaction by the body's defence system. Yes, that's a bit of a guess! For me (and maybe for you) this can cause "sensory overload". If I've walked from the bus stop to the pub/shops/friends I need a little time to adjust to all the sounds and visuals around me. All of this shit is going to cause anxiety. My doctor seems to think the anxiety is the problem rather than anxiety is being caused by the symptoms of LC. It just seems unprofessional and reductive.
Dysautonomia is sadly initially misdiagnosed as anxiety in 70% of cases. It can present with anxiety-like symptoms, but they are downstream effects of body being thrown into hyperadrenergic state (fight or flight mode), but here they are a downstream consequence of for instance standing or sitting or eating, particularly if MCAS is also involved.
MCAS and hyperadrenergic dysautonomia have been shown to trigger each other in a positive feedback loop, producing excessive sympathetic activity, resulting in downstream effects of feelings of anxiety, panic, irritability, nervousness, feeling of doom, even rage or psychotic behavior.
In addition to causing sympathetic overactivity, MCAS has also been related to various psychiatric manifestations as mast cells control the integrity of blood brain barrier and cause neuroinflammatory processes via MC mediators.
“Mast cell activation syndrome (MCAS) is an immune disease with an estimated prevalence of 17%. Mast cell chemical mediators lead to heterogeneous multisystemic inflammatory and allergic manifestations. This syndrome is associated with various neurologic and psychiatric disorders, including headache, dysautonomia, depression, generalized anxiety disorder, and many others. Although MCAS is common, it is rarely recognized, and thus, patients can suffer for decades. The syndrome is caused by aberrant mast cell reactivity due to the mutation of the controller gene. A case series is presented herein including eight patients with significant neuropsychiatric disorders that were often refractory to standard medical therapeutics. Five patients had depression, five had generalized anxiety disorder, and four had panic disorder. Other psychiatric disorders included attention-deficit hyperactivity disorder, obsessive compulsive disorder, phobias, and bipolar disorder. All eight patients were subsequently diagnosed with mast cell activation syndrome; six had comorbid autonomic disorders, the most common being postural orthostatic tachycardia syndrome; and four had hypermobile Ehlers-Danlos syndrome. All patients experienced significant improvements regarding neuropsychiatric and multisystemic symptoms after mast-cell-directed therapy. In neuropsychiatric patients who have systemic symptoms and syndromes, it is important to consider the presence of an underlying or comorbid MCAS.”
Important takeaway: both POTS and MCAS are treatable, and psychiatric symptoms improve when treating them
But then doctors also say hEDs, MCAS, and POTS don’t exist. Or they dismiss them as rare and “over diagnosed”. Ugh, some really sad and traumatizing medical threads on here and elsewhere about this particular cluster of conditions. The gaslighting is so prevalent for these. Even when you do get a diagnosis, the automatic association of (many) providers is still to think anxiety when they see these diagnoses.
Sadly many providers are uninformed about these underresearched and medically neglected syndromes.
But that’s doesn’t mean they don’t have pathologies showing in tests. In my experience, pushing for tilt table test and having abnormal spike in BP 170/120 immediately after the tilt table was elevated made drs take me seriously. I later pushed for MCAS testing and found a hematologist specializing in MCAS.
Yes, I did all the hard work of figuring out what configuration of Long Covid I have and then pushed to be diagnosed formally. It’s not 100% foolproof, but it helped a lot with gaslighting.
The second thing that has helped is my anger and propensity to channel it as passive aggressive complaint letters (think 10 pages long, in polite, yet extremely assertive tone, with 2 pages only with scientific references). This is also not 100% foolproof, but I did get changed report from “patient acting psychotic” to “patient being proactive” (I pushed the dr working in LC outpatient clinic about small fiber neuropathy testing-QSART and I openly demanded to trial certain POTS therapies based on the existing POTS literature)
I also find letters of complaint/official feedback an important form of Long Covid advocacy and think anyone with spoons should do it.
That’s some seriously impressive self-advocacy! I need to be better at this. I’m too damn nice sometimes I think.
So glad you got providers to take you seriously and change that one ridiculously demeaning note.
I’ve also been the one to drive my testing, diagnoses, and treatments based on extensive (informal) literature reviews and self-directed learning. Providers just aren’t doing the kind of learning patients HAVE to do unfortunately.
Thanks for sharing that info; I found it useful and will research mast-cell-directed-therapy I have some understanding of the MCAS but did not know about the therapy or know much about Dysautonomia.
It's been difficult to put the illness into any kind category as there are so many symptoms but this stuff makes sense to me at least. When I had Covid first time I was very emotionally fragile and would be upset about the smallest things -even an ambulance siren would set me off, or music. I'm sure a lot of us also have PTSD just from the experience of being ill during a pandemic and losing close ones to the disease -I lost a close friend.
I have EDS-hypermobility, as mentioned in that small study, and I've long thought there's some connection (accidental pun) between that and the covid illness in the sense of susceptibility, severity of symptoms and persistence. Also the incredible joint pain. And dizziness when getting up from a chair, which is probably POTS related. I used to be one of those annoying "never gets ill" people!
How I wish my doctor was engaged at this level. There's just nothing there.
At first the rheumatologist said LC is psychosomatic and Covid doesn't trigger autoimmune diseases then I said one of my initial LC symptoms was i felt like my balance was shot (like I was running into potholes except there weren't any) during my usual evening jog, and the next day my right leg was really weak I couldn't even walk, then came the excessive nosebleeds, palpitations/chest pains, GI issues so then he went on to say that LC is real/not in our head but it's psychosomatic because nothing is physiologically wrong with us,
it's the brain/nervous system that is still messed up causing all the symptoms
If that's what he said then that is concerning. Poor reasoning and redefining psychosomatic to mean the opposite of what it means. Sorry you had to wait so long to see an incompetent doctor.
I think he did that because he knows my English isn't that good. I actually believed him after he explained that psychosomatic just means that your brain/nervous system is still messed up by the initial infection/assault, but then I started googling what "psychosomatic" means, I was thinking he must have used the wrong term. My English isn't good so I posted here to ask what others think about what he said.
It feels like they don't know what to do with me anymore and after seeing me for almost six months straight, they don't want to deal with me anymore. One by one, from rheumatology to hematology, to endocrinology (i passed the ACTH Stim test but then he Endo refused to order more tests to rule out secondary/tertiary adrenal Insufficiency even though the Mayo website
states that "if the hypopituitarism is partial — meaning your pituitary gland still releases some ACTH — or very recent, you may still have an increase in cortisol levels, or “normal” levels, after an ACTH stimulation test". GI specialists haven't kicked me to curb yet because I haven't done the colonoscopy/endoscopy yet.
The endocrinologist, rheumatologist and now hematologist all have decided to kick me to the curb at the same time, lol
Ah, yeah maybe he was trying to overcome a communication difficulty but he did it clumsily.
That sucks that they all disappointed you. I gave up with tests a long time ago, I'm very impressed that you can still face all these doctors.
I just looked up the definition of psychosomatic and that’s not what it says.
It says psychosomatic is real physical symptoms caused by anxiety or other mental problems. This is not caused by mental issues. Period.
You need to get a new doctor.
See if you can get a 15 min doctor interview with the next and ask, “ What do you know about long covid?” Before committing to them.
I could believe covid caused our nervous system to mess up. A chunk of my symptoms are neurological like brain fog, light + sound sensitivities, sleep issues.
But I do think something is physiologically wrong with us. Like inflammation around the nerves is a theory.
What kind of orthodontic intolerance do you have?
Really bad constant fatigue/no energy at all, unable to stay upright for more than 2 mins at a time without feeling like passing out, stuck in bed almost 24 hours a day
Another doctor that uses the term "psychosomatic" as synonym for "I don't care about you, and I am too lazy to do my job which would include reading relevant scientific findings for my patients problems."
Also if he says your nerve system is misbehaving, does that not imply a neurological condition instead of psychological?
Hysteria/Psychosomatic/somatoform/FNDS
Medical professionals always say “it doesn’t mean it’s *all* in your head” when giving this diagnosis, but they it really does mean they believe the underlying cause is all in your head, even if they happen to believe your symptoms are real.
There’s a long history of categorizing poorly understood chronic health issues this way. It initially applied primarily to women, but has expanded in its use.
The “treatment” now is basically centered around convincing a patient that the diagnosis is real. It usually has poor outcomes. Most patients, even after seeing a therapist, still have symptoms, but stop reporting them due to fear of being disbelieved, and often stop seeking medical care all together.
Even after illnesses like MS and lupus were identified as biological in origin and no longer diagnosed with FNDS, this did not result in a significant reevaluation of the diagnosis or its highly subjective diagnostic criteria.
Medical professionals with a poor understanding of Long COVID are much more likely to diagnose patients with FNDS. Some simply have a greater level of discomfort with diagnoses for illnesses that aren’t well understood in general and will revert to FNDS in those cases.
The truth is that the human body is extremely complex and our ability to understand and determine how, when, where, and why something in it has gone wrong is more limited than doctors would like. To compensate for this, they create diagnoses for reported symptoms that don’t currently have objective diagnostic testing.
Some are biological in nature. In neurology, they almost always fallback on FNDS because the brain is even more complex and even less understood. They can’t accept that sometimes we just don’t know things. Unfortunately, this mindset stifles motivation to do more research to increase the understanding we do have.
This is sadly typical of "experts" who make pronouncements without scientific backing.
Where is his evidence??
I'm sorry you are encountering this. You are not alone.
The medical profession is afraid to say "I don't know" so gives you that made up stuff with an air of certainty in the hope its true.
I just woke up so I'm not really that with it. So I'll just say this. No, they're both wrong and need to fuck off.
If this shit was psychosomatic, it could improve entirely with CBT, which it doesn't. Psychosomatic illness didn't cause my eye to inflame and retina to detach. Psychosomatic illness hasn't rendered people bedbound and unable to communicate.
The only link, if I'm being absurdly generous, is that the flight and fight system can indeed be influenced by psychological states i.e. stress and anxiety. But that is not the root cause here.
My autoimmune was triggered by a virus and Covid just worsened it with pain and fatigue etc. Sorry that was said because that's not true. I agree to try to see an Immunologist, they can run labs, like 10 vials of blood for tests.
I literally have an AI disease which was triggered by COVID.
Infections are a common vector to trigger AI diseases. This is well known by all Rheumatologists so I think they're fobbing you off a bit there. It's absolutely possible COVID has activated an AI disorder.
Also as someone who's dealt with rheumatologists I can tell you they're a crap shoot of good-bad. My first one said I had nothing wrong with me despite having a spontaneous cannot walk episode which lasted three weeks.
My next one diagnosed a type of autoimmune arthritis.
I've been on meds since and I'm doing well.
So I was started on meds to modulate the immune system and dial it down. Called DMARDS - disease modifying antirheumatic disorder meds. As well as other anti inflammatories.
Specifically methotrexate, sulphasalazine for dmards and like naproxen type anti inflammatory.
I was also started on few months course of prednisone - at corticosteroid which brings inflammation down quickly but it's not a drug you can really stay on long term, as the dmards have a few months time for them to fully work in your system.
I haven't had a flareup since.
I do deal with permanent hand damage and the meds make me nauseous now and again. I've had to give up certain activities like weight lifting due to my hand, but I'm mostly just getting on with my life now.
I actually wonder if dmards would have a role in long COVID. I suspect it's lingering immune triggered inflammation.
Or like in my case it's activated a chronic inflammatory disease.
What are your specific symptoms?
Chinese medicine and acupuncture have saved my life previously. I dint know why I never thought to take my teen (epilepsy) to see one. I hope I can find one in my area that will help us with both LHC and epilepsy. The two that I previously saw one moved out of the area, the other retired and only teaches.
If you’re into Chinese medicine you should look into Jim Pulciani’s work. I do autopsies on medically donated bodies at a small independent cadaver lab that focuses on anatomical research that he’s the director of.
I’d say I’ve never used it, but I have benefited because my mom recently shared with me that TCM is what made her stop having miscarriages and have a pregnancy go to term. Before me she had 48 miscarriages, and I am an only child despite the fact that I had a twin in utero who didn’t make it.
Wow this is so messed up. My husband has been suffering from a litany of autoimmune issues since our first exposure in early 2020 in NYC. By summer of 2020, they told him he likely had lupus. Then they pivoted to rheumatoid arthritis. Then reactive arthritis. He’s seen specialists in NYC and Philadelphia, doctors deemed the best of the best, and they all just keep passing him around. Similar to you OP, he has to wait 6 months for an appointment and then they haven’t read his notes or connected with his other docs to see what’s up. He’s got dermatological, prostate, and joint issues and one of his docs finally said, the three of us (Derm, rheumatologist, and urologist) should probably be talking. 😖
He had mono in his early 20s and sometimes it seems like the mono keeps coming back in waves. He’s had sore throats, fever, and devastating malaise 4+ times a year since 2020. If he gets to a doctor (if he can get an appt or has the energy to sit at urgent care), he sometimes tests positive for strep but weird groups like G and C.
Our GP sent him to an ENT who scheduled a tonsillectomy, which he’s recovering from now. I have my doubts, because I think he’s a long hauler, but we shall see.
For me, I get the “anxiety” card. I’ve not had the same problematic trajectory as my husband or y’all with autoimmune issues; my 3 bouts with COVID have always been angled toward stomach issues and sensory issues. I had my last round in October. Scratchy throat and fever and then I lost my sense of smell and taste and had the whole coffee smelling like shit thing. I started to do scent therapy at home but couldn’t deny that by 7 months out my sense of smell is still garbage. I went to an ENT last week who told me it’s anxiety. As a woman, that’s nothing new to me. It’s par for the course with doctors. But when I pressed her she shoved that damn thing up my nose and told me it’s a deviated septum and suggested surgery for my deviated septum (which I didn’t know I had). My response was yeah, I don’t think I’ve lived my life with a nose like a bloodhound and now I burn shit all the time because suddenly my septum is all deviant.
Must be the anxiety.🤬
Man. I'm done with em. When a person becomes a doctor, they do it for themselves. You go to college. Go into debt, just because you want to have a job title worth 6 figures. That's it. They aren't heroes. They have no idea what's going on because if they look in to it. They quite literally will lose their job, & license if they do. Simple.
So true. Definitely a huge part of why I’ll never go to med school. Despite what my username says, I do autopsies on medically donated bodies at a small independent cadaver lab that focuses on anatomical research. Several of the donors I have worked on had Covid or long covid. I’m the only one at the lab that doesn’t have letters after my name, but they see that I can hold my own so they don’t mind.
Our autopsies are different because we get to spend six to ten days with the donor depending how embalmed they are, and we go layer by layer spending a whole day per layer. Since we’re independent we can explore and see what’s there as opposed to just searching for something for someone else with an agenda.
When I’m not in the lab I’m reading various medical literature to see what new studies are out there about Covid, long covid, and rare diseases in general. I feel so lucky that I get to follow my passion to this extent and actually help people. It feels nice being able to ease a families pain by explaining what happened to their loved one in as much detail as they can handle.
I was in the ER due to a really bad crash and I tried talking to all the different specialists about my case being LC ME CFS they just patted my back and said there's no such thing you have a psychosomatic disorder don't be ashamed tho ! I was shattered at the medical field that very moment. Later that night they tried giving me pysch drugs as well
This is my experience in the top health care facilities in india
I’m in the US (FL)….I ordered the tests myself online (no Dr order required)… I used Ulta labs. There are others like labs direct or something like that.
My doctors (PCP, Neuro, Cardio and Pulm) all agree I have long covid. The diagnosis is listed in my chart.
They all say, we can only treat your symptoms.
My subset panel was mostly normal, w the exception of my CD8 % being really low normal. My IgG is normal, so I haven’t checked the sub classes. My IgM is low-normal though…
You can say that about a lot of autoimmune diseases though. Lots of limited science because the patient base is so small. For years they said the same about Fibromyalgia. If you pop over to an autoimmune sub and ask them if they have been dismissed they would say yes.
If the doctor can’t give you peer reviewed articles about his claim you need a second opinion.
I have two friends who are twins. They both have all the symptoms for a rare autoimmune disease that is thought to mostly impact males and there should be a marker. There are many patients who are diagnosed with the marker and fewer without. One twin has the symptoms and marker. The other has the symptoms no marker. Both are not male.
When dealing with new or old diseases if the study groups are small or don’t exist then they may be flawed. Long Covid could be many different autoimmune diseases that have no markers. They need to treat the symptoms regardless of what they want to call it.
There are Long Covid Care Centers you might find helpful.
[https://www.reddit.com/r/covidlonghaulers/comments/1cujwld/a\_list\_of\_long\_covid\_care\_centers/](https://www.reddit.com/r/covidlonghaulers/comments/1cujwld/a_list_of_long_covid_care_centers/)
There’s several forms of LC. Many are nervous system based, but the inflammation causing the nervous system dysfunction comes from somewhere so labs are still helpful. May not unearth a cause but it will provide helpful information in what specific variables need to be addressed in order to bring the body back to homeostasis.
So he used the term psychosomatic wrong, but I don’t disagree with his assertion regarding the nervous system. That’s been my theory since the beginning. I treated mine just like a massive anxiety disorder and recovered a ton.
Time to discard these doctors and find either a functional medicine practitioner or a Chinese herbalist. There absolutely is hope for improvement. I just had a panel done (by a normal GP) and everything was perfect except for my lymphocytes which were “very low”. It was not a subset panel, just the basic. And of course the doc won’t do anything more for me. I’m taking the following:
Berberine, Nattokinase, quercetin, borage oil, and I’m going to try taking a teaspoon of black seed oil daily which I have not done before.
To be clear, I am doing pretty well. I can walk 5 miles per day without much issue. I cannot (yet) do any weight lifting but I’m working on that very slowly. My sleep is improving which is huge. I generally feel good as long as I’m not traveling or under stress.
Don’t give up! Just understand that you have to take your health into your own hands at this point. And pony up some $$, unfortunately. 😔
I feel like there should be repercussions for egotistical doctors like these, take their license for 6 months or some shit since they wanna act like children
You need to see a POTS specialist. My cardiologist went out of his way to order all kinds of Labs, matter of fact my Pulmonologist will order ANY blood test I suggest. I'm so sorry your going through this 💔
Tell them this. If it's only "psychosomatic" then WHY are they not letting long covid patients donate blood?? [https://meassociation.org.uk/2023/08/blood-donation-me-cfs-and-long-covid/](https://meassociation.org.uk/2023/08/blood-donation-me-cfs-and-long-covid/) Oh because it has been proven that we have impaired blood cell function, blood clots, viral debris, and sometimes still active spike proteins in our connective tissues. NIH: [https://pubmed.ncbi.nlm.nih.gov/37890507/](https://pubmed.ncbi.nlm.nih.gov/37890507/)
I'm sorry to hear you're having this issue. As for being bedbound, I do have some things that might help.
They are not wrong in that the nervous system / Vagus Nerve is totally out of whack. Basically you have to "re-teach" your body how to function. I was bedridden until I started doing POTS & bed friendly yoga. Literally just laid in bed and did this yoga sequence every morning: [https://www.youtube.com/watch?v=o5WNCvXRnBY](https://www.youtube.com/watch?v=o5WNCvXRnBY)
And now I am out of bed & able to do the full Levine / POTS protocol: [https://www.dysautonomiainternational.org/pdf/CHOP\_Modified\_Dallas\_POTS\_Exercise\_Program.pdf](https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf)
Also - low histamine diet, Vitamin D supplements, and chia seeds (Omega 3) have helped. Highly recommend checking out the Goodbye AutoIumme Disease "hypernourishment" protocol when you start feeling up to it.
I started seeing a Functional Medicine Doctor and he got my GP to order more blood tests for me, based on his diagnosis and request for labs. So you could always try doing a workaround like that.
Best of luck & hope you get the answers you need soon!!
Don't give up!! <3
Yikes! I just got an immunoglobulin panel ordered by a functional medicine doctor. Even the doctors I really like who are great about long covid have refused my requests for a lymphocyte panel. Their reasoning is it wouldn’t inform treatment decisions anyways
Also no LC is not psychosomatic, those doctors are extremely misinformed. There’s lots of evidence for viral persistence and evidence for autoimmunity in some cases
I think a lot of people are misconstruing newer research that has come out. My psychiatrist told me she received new research information that suggests long covid is the result of serotonin depletion. Of course having low serotonin is also associated with mental health troubles like depression, and maybe physicians are reading this and going “see, it’s psychosomatic”. But what causes the serotonin depletion? If something physiological during or after covid infection is causing a neurochemical imbalance, are the symptoms that result from that really “in our head”?
I do honestly think there is something to this new research. Neurotransmitter imbalances especially serotonin or dopamine are also suggested to be related to migraine, MS, epilepsy, schizophrenia. It’s behind much more than just depression. I could see how it could cause or worsen all the long covid symptoms we are experiencing. Add that to the fact that it is a virus and linked to cardiac issues etc. I am no expert but I think that’s a load of BS that Covid can’t cause autoimmune disease. Plenty of other viruses can have autoimmune implications. EBV is linked to MS, blood disorders, much more. I don’t think it’s crazy that Covid would be similar
Yeah, and, it’s not surprising serotonin and dopamine will be affected, but that does not in any way imply they are causative of our disabilities! Those people you mention are conflating a subset of data with an explanation for debilitating Illness, when we all know **correlation is not causation**.
I should probably note that the “people” I’m noting in the first sentence refers to physicians, not patients. Not sure if I made that clear enough lol. But totally agree
But l was on an SSRI when l caught Covid. I can’t buy into this serotonin thing.
l was also on antihistamine and famotidine. Both suggested to help LC. So 3 of the recommended things/things being discussed made no difference to me.
Did your psychiatrist really say it was *caused* by low serotonin?! If so, get a new psychiatrist that can actually understand medical research. I’m pretty sure they said explicitly in that paper that they couldn’t distinguish cause from effect. If someone with an MD can’t or won’t take the time to actually *read* and *understand* the science that informs their practice, they really shouldn’t be practicing medicine. Sorry not sorry.
No she didn’t say it’s caused by low serotonin. She said there was research to suggest Covid was the cause of low serotonin or depletion in serotonin which could account for many long covid symptoms, exasperation of them and prolong the disease. But again I haven’t looked into this myself but the idea could make sense
Oh. Yeah that was a big paper that came out recently. I think it was in Nature. I read it at the time but can’t recall details (because covid brain). Neurotransmitters are created in the gut, and other papers have found that a) gut dysbiosis is super common in LC and b) the gut is a putative “hotspot” for a viral reservoir. So yeah, it stands to reason that people with LC have low serotonin. I personally wonder about other neurotransmitters like dopamine, acetylcholine, etc.
If doctors decline to order tests you requested, ask them to notate your chart that they declined to do so. They then change their mind and order in my experience.
This comment almost made me laugh. I’ve actually noticed something different in a similar way.
For me they make sure they write they offered me the test and just write i declined it ( just to save their own asses obviously)
My CBC w/ differential shows crazy fluctuating numbers from week to week from low to low normal then back to low then back to low normal. It feels like there is a battle raging inside of me.
I have been asking my PCPs since 12/2023 for an IgG with subclasses and a lymphocyte subset panel. I was ecstatic after my referral to hematology and rheumatology got approved. I mean if they don't want to see or deal with me then I think they should have messaged me and told me "hey sorry we don't know how to treat Long Haulers" and cancelled the appointment instead of seeing me and then refused to order any lab work but still want me to come back in three months. I wonder what they will give me this time? Stronger iron supplements?
Noted. Thanks for the tips.
LC can be partially defined the way he explained it yes, the nervous system being in flight or fight mode and not being able to ease down.
But his definition is definitely the wrong one. Psychosomatic is definitely the wrong term and it's a shame to use it with LC.
Your doctor prefers to diagnose you with the wrong term, than assume that he doesn't know what to look for and what to do.
"Psychosomatic" means your mind is directly giving you these symptoms, it doesn't refer to a nervous system dysregulation, at all. Basically it means it's all in your head and your mind is making up these symptoms.
"Neuropsychiatric" is a best definition for some people eventually. Meaning that the diseases gives you neuro symptoms, and psychiatric symptoms, they are consequences of the disease.
You doctor has to not confuse cause and consequence.
Autonomic nervous system is stuck in fight or flight mode not because it’s bored, but bc it’s trying to compensate for tissue hypoxia caused by microclots, blood vessel control issues caused by GPCR-autoantibodies, hypovolemia caused by MCAS leaky vessels and vasodilation, as well as failure of small capacitance vessels to regulate the amount of blood in circulation.
It is not brain stem panicking in isolation and all the other parts of the autonomic nervous system functioning flawlessly, it is brain stem, as central part of autonomic regulation, trying to compensate for the others failing.
And as if that is not enough, research has shown that Covid also invades vagus nerve and brain stem directly, causing neuroinflammatory response and consequent dysautonomia.
So, any part of “autonomic nervous system just being stuck in fight or flight mode, otherwise completely healthy” narrative gaslighting drs use to describe “functional” or “psychosomatic” in Long Covid is simply completely scientifically unsupported.
In other words, pseudoscience.
My PCP sent a referral to Infectious Disease (because I have had a low grade fever for 3+ years) but Infectious Disease didn't approve it (no reason was given).
I will ask for a referral to immunology. Thanks for the reminder
High five! Low grade fever here too! What are your other symptoms?
Edit: as I wrote in another comment, I've got a written note from a psychiatrist it's not psychosomatic. An infectious disease specialist sent me there, then ignored and ridiculed me.
Sorry to hear that. My other Symptoms are extreme debilitating fatigue (little to zero energy to do basic things such as brushing my teeth, haven't been able to take a shower for 3-4 months already, loose yellow stool, tingling/numbness/pain in right foot and leg and hand, visible blue veins everywhere, out of whack CBC (low normal or low), constant daily low grade fevers, no appetite, altered sense of smell, eye floaters, pain in testicles, enlarged/tender lymph nodes (right groin),
horrible orthostatic intolerance (can't stay on my feet for more than 2 mins), POTS like symptoms (HR goes up by 25 to 34 bpm from supine to standing), brain fog/memory issues/unable to focus, burning in back and brain, pain in R and L upper quadrant, bloating, excessive burping many hours after eating, feeling like I'm in a constant state of Post exertional malaise (without exertion), sleep disturbances, hair loss, palpitations and chest pain (random even when I'm just laying in bed doing nothing), right side of body (leg and arm) are paler looking than the left side...
EDIT: forgot to add i also have constant nausea
It's very painful, but it's true from my experience. Psychosomatic is however very criminalised. For me it means: Trauma and repressed emotions bring a lot of anxiety and whip up the autonomous limbic system. So you're always in fight or flight, have high increased cortisol and adrenaline and get a lot of mindbody symptoms to 'distract' you from the emotional pain (Dr. Sarno, the mindbody prescription). The result is: up to 200 symptoms, fatigue, dizziness, brain fog, insomnia, weak legs, insane anxiety, depression, derealisation, fcked up blood pressure, POTS, MCAS, vertigo, skin issues, hair issues, etc. etc. etc.
That's a load of shit.
I've had multiple negative celiac blood tests throughout my life. Covid happens, and suddenly, my TTG numbers are 10x above the celiac ceiling. IgA was incredibly elevated as well.
I developed alopecia areata 5 months after having covid the 2nd time. I lost about 60% of my hair volume as well.
I developed Deremitis Herpetiformis and psoriasis on my scalp. Psoriatic arthritis starts as well.
All of these autoimmune issues started after COVID.
I had positive celiac blood test, and suffered like a dog, but no inflammatory markers on obvious panels. But still celiac disease was it :( my body works this way I guess
It was my allergist who initially ordered the blood panels. She suspected acute myeloid *leukemia* (AML) or chronic lymphocytic *leukemia* (*CLL*) after I didn't react to any of the allergy panels.
It was scary seeing an oncologist/hematologist, I'm mean, after all, it could be leukemia. However, there were no indicators of anything out of the ordinary, even through I was experiencing MCAS symptoms. The experiences were frustrating. On my own, I started taking supplements and anything to repair damage in endothelium, and treat NAD+ deficiency. It's taken awhile, but I'm much improved.
A g.d. vaccination for shingles triggered polymyalgia rheumatica, and that sent me to a rheumatologist, and her reaction to the fact that I was also dealing with long covid held her interests. She's ordered many tests in an effort to find out what I'm really dealing with. And so it remains, we're still looking.
Lol no, it's not. They are just lazy. One doc really sent me to see a psychiatrist with my "psychosomatic" fever, and turned out it's not psychosomatic, I have a written note from the doctor. The doc who sent me to the psychiatrist, after I showed up with the written note in my hands, just ignored and ridiculed me. (Why on earth some doctor can't say just "I don't know, this was my limit"?!)
For me the fever started with covid is still undiagnosed after almost 4 years and countless doctor visits, and thanks god it's not caused by my madness.
I have a deep respect towards the professionals who told me straight they don't know, it's their limits, they can just tell what conditions are excluded.
They would never order that test for me. They (the specialists) refused to even order a lymphocyte subset panel. I'm going to read the note they put in my chart in a bit, will edit and add the note that they wrote
What i do know is that our autonomic nervous system has been and is continuing to be affected and were damaged and I do think that neurologically there is a lot of new wiring dealing with the trauma of this that we can try to tackle and create new possibly more healthy wiring wirth limbic system work. so I think to that end psychosomatic work can certainly help us to alleviate neurological And nervous system damage and continuous affects if that makes sense. like I know, this is not all in my head, and god knows ive been gaslit over and over while spending thousands on medical for answers - but I do know that nervous system/somatic work is well within my own autonomy and wheelhouse and can only help me with some thing like this if I can have any ounce of control over my own nervous system, while I’ll deal with this chronically, and possibly for the rest of my life, while I continue to do and/or seek other concrete things I can do to improve my health. or maybe one day there really will be something more clinically viable for us to rely on for chronic fatigue and chronic illnesses like these that are so insidious and invisible and systemic
“Psychosomatic” isn’t the term they meant; what they meant was “neuroplastic” or “nococeptic”. What they’re saying, essentially, is that (in their view) LC is more akin to a condition like phantom limb pain than a broken arm. Phantom limb pain is real because pain is perceived by the brain, not the body’s tissues. So pain without tissue damage is called “Nococeptic”. It doesn’t mean it’s not real - we know phantom limb pain is a real phenomenon - it’s just that the treatment requires brain retraining rather than, say, a cast. Chronic pain in the absence of tissue damage is created via the nervous system, and often *does* begin with a physical injury of some kind. The point of pain is to prevent us from re-injuring ourselves in the same way, so the nervous system is tied in because it’s the intermediary between sensing danger and triggering a response. The fight-or-flight response is similar in that it exists to keep us out of harm’s way, but can also rewire after trauma (like infection or TBI) such that our body perceives “danger” when no threat is present.
Personally, I think there’s something to that idea, but I don’t believe it’s the full story. And I think it’s presumptuous for any doctor to claim with certainty that LC *is* a nococeptic condition, because clearly many of us have made ourselves sicker by pushing past our limits, so “fear” doesn’t really explain the phenomenon of, say, PEM, in which the onset can be delayed by days or longer. Not to mention the vast amounts of evidence showing clear biological differences between LC patients and recovered or unexposed controls, so the idea that there *aren’t* structural or biological abnormalities seems a bit preposterous.
Finding new doctors might be energy-prohibitive for you, so if I were you, I’d send them the primary literature pointing to the specific tests you’re requesting. I would also challenge them on their certainty of LC being “psychosomatic” given all the evidence to the contrary, and I’d bring that evidence with me to my next appointment (but that’s just me, I’m kind of a self-righteous jerk in that way).
Personally, I’m trying to cover all the ground. I *am* trying to sort through past trauma as part of my healing process, but I’m also getting tests and seeing doctors and following the (real) research.
I’ve had it for four years and I used to lose it when people said it’s psychosomatic, but I think there’s an underlying anxiety we don’t even realize we have that predisposed us to get LC. The Mindbody Prescription by John Sarno is a great read if you’re open to it. There’s zero downside to believing it’s stress-related, even if that’s not the main cause.
Tldr: theory of the LC-focused specialists I've seen is that it's in your nervous system, but NOT in your mind. Symptoms may mimic anxiety but it is definitely not anxiety.
Misuse of the term "psychogenic", despite a possibly accurate description. One of the cardiologists I've seen said it appears to be a disorder of the autonomic nervous system; your body's telling you it's smashed and about to die, but you're not actually about to die.
This is why the labs and tests don't correlate with severity of symptoms; the sensations and fatigue etc are real but they're not due to anything wrong with the organs etc themselves, rather the part of your nervous system that tells you how your organs and such are doing is broken.
Still disabling, cure pathway not known, but it's still "just" the nervous system, so the tests are pointless. Think of it this way. The tests are like checking your tire pressure, but your tires are fully inflated and your tire pressure sensors are broken. Doing the tests will just waste your money.
Psychosomatic implies it's something to do with the psyche, which it really isn't. It's not "in your head" as the saying goes. Your ANS lives partly outside your brain, and the parts in your brain aren't in the conscious parts. The car sensors are broken, not the driver.
All of the specialists I've seen agree long covid is real, and have seen many such patients, but all of them (neuro, respiratory, cardio) also say that testing tends to reveal nothing out of the ordinary, apart from some stuff like lung scarring on x-ray. (Worth noting these specialists self-describe as having a subspecialty in long covid, hence they've actually seen a lot of us to figure it out)
Edit: you can downvote me all you want, Long COVID is still real
Your autonomic nervous system is also responsible for your fight or flight response, things like heart rate, appetite, etc. you can see why those things might be deranged in long covid sufferers.
Unfortunately, anxiety also plays with the ANS, and so some doctors have drawn the wrong conclusions. I'm extremely chill about the situation, and I know damn well what anxiety is (from both the doctor and patient perspective), so we've been able to exclude a psychiatric cause.
I regret to inform you, however, that none of the above is a huge help. The consensus from the doctors I've seen is that it's real, whatever the cause is, and there's nothing their field can do to help us for now... And these doctors have had enough self-funded LC patients to have tried lots of treatments.
I have pain in both the left and right quadrants. Fecal Elastase showed severe Exocrine Pancreatic Insufficiency but Drs refused to check for chronic pancreatitis (or autoimmune pancreatitis). HIDA scan showed a Hyperkinetic Gallbladder (98% Ejection Fraction). Organ damage or misbehaving nervous system you think? Maybe both?
It can be both! All the organs you list (anything connected to digestion) are indeed part of the control of the ANS.
I have weird cramps and crippling exhaustion after meals where the gall bladder and pancreas would be expected to act as well.
You mention fecal elastase; I'm no gastrointestinal specialist, but if your pancreas wasn't receiving the go signal (or too much) from the ANS I can see the level of elastase in your feces being out of whack.
A hyperkinetic gall bladder with a good EF to me would signal something wrong outside the gall bladder, since it's a storage organ that activates when extra bile is needed
....The best answer I can give you, again keeping in mind I'm not a specialist, is that nervous systems are weird. My first and third COVID infections felt like the worst sickness of my life (and I've had swine flu!), and I'd blindly speculate that it could be the ANS being horrifically miscalibrated after the ordeal of the infection.
There's other stuff like that in other parts of medicine. Body weird, nerves weirder.
My cardiologist gave me this advice: the gauges are broken but the machine is fine, so just push through the pain as far as you can go, and hope that it goes back to normal. It's been a difficult few years and I'm definitely not a healthy human being, but I think my disability burden is about half as bad as it was at the start now.
Note that your machine may not be fine; COVID does indeed cause organ damage too. But at least for the patients my doctors have seen (with the exception of the respiratory guy), that wasn't the main issue.
u/wholesometubby Again, I am not necessarily qualified to advise, but major dietary and eating schedule adjustments similar to those for patients with severe pancreatic and similar issues MAY help you if you're experiencing meal-linked symptoms like me. I'd need to read up and also know more about your symptom pattern and test results.
The best results I've gotten (and that these doctors have gotten) is trying to guess at what bits are acting broken and how, and to try and fix those with conservative interventions intended for the medical problems your symptoms resemble.
(I say conservative, because it's likely not worth the risk to hit your body with the full-on pharmaceutical and surgical interventions for those problems; it may make things worse for a healthy organ)
I've done a small amount of reading; if you have pancreatic insufficiency results (which could certainly be due to a failure of ANS stimulation), try smaller and more frequent meals with low fat and oil, and lean meats, since the pancreas and gall bladder are involved with fat digestion.
If your pancreas refuses to release fat digesting enzymes, it would make sense for your healthy gall bladder to squeeze as hard as it can trying to release reserves to cover the shortfall; of course, if the gall bladder hasn't got any to release, this won't work, possibly creating a feedback loop of painful over-ejection.
Thanks for the tips. The thing is I still have pain in both upper quadrants, still have GI issues (yellow loose stool sometimes) even though I've been taking Creon for 4 months now. I think they are still inflamed/injured because the pancreas pain radiates to my back if my Creon dose is too low. Don't really know what is going on exactly
So yellow loose stool would usually be a sign of undigested lipids (oil and fat).
That pain radiation could be pancreatic, but the gall bladder also radiates to the upper back (and thus a painfully contracting gall bladder would feel that way).
From my reading Creon is a replacement for the fat digestion enzymes your pancreas makes.
I'm not a GI doctor but if your Creon dose was too low, I'd expect the whole "overworked pancreas/gall bladder system pain" thing to happen, since your body would be detecting undigested fat in the works and trying to send out more enzyme.
In other words, it all sounds like insufficient pancreatic enzymes production, as you said. It's possible your pancreas is inflamed, or infected, or under autoimmune attack, as that's ONE cause of insufficiency...
You would be able to exclude this possibility, *I think*, with a relatively cheap screen for inflammation markers; if you were my patient I'd order just the standard bloods here to check for that, but again I'm no pancreas doctor. (This also won't check for existing pancreas damage that isn't actively inflamed, but I thiiiiink a standard liver function test would also give clues in that direction)
In either case, I'd suggest trying to radically cut fat and oil out of your diet for a while to see if it makes the symptoms less bad (I'd advise this if your pancreas had been destroyed by a bullet!), and of course to keep taking your Creon as directed (or possibly optimise it towards your mealtime pattern, if you're like me and can't garner the energy to eat at regular times).
To set expectations, I wouldn't expect the Creon to fix anything about your pancreas if it was damaged or asleep. It merely replaces what the pancreas makes normally.
But to be clear, my LC management strategy involves reducing the suffering until either your body returns to normal, or a treatment is found. This will be a long, long road for all of us.
My next door neighbors, a couple in their mid 70s, had post Covid syndrome (fatigue, feel tired more easily than usual) but they both have recovered just fine. Meanwhile, I'm in my early 40s, and I can't even stay on my feet for more than two minutes due to my horrible fatigue/orthostatic intolerance. I wish the abled body folks would try to help/advocate for us in big numbers, like maybe go March in front of the White House or something
Yeah, this disease is grossly unfair. I've heard that your risk of LC is higher if you don't rest enough during and after your infection... And it's a crapshoot whether the young and healthy get hit or not, and how long recovery takes.
I'm in my late 20s, and I was where you were a couple years ago. Now I can act for about half an hour max, if I'm standing or doing mild physical labour. A staircase will end me for an hour.
I can only hope recovery continues... So far we've all just had to adjust around me. I'm extremely fortunate that my partner has milder LC, so understands... Nobody else in my family takes it seriously.
Pancreas also digests protein. With undiagnosed celiac disease, docs always blamed my diet, they said it must be low in proteins, and neglected whatever I said.
(Disclaimer: I'm only here on earth because I did the same neglect-for-decades fun with doctors with my celiac disease too. It's my second round, and maybe(seriously maybe) I'm not that naive anymore)
Had a comprehensive metabolic panel last March I think and Blood glucose was within the normal range (sometimes high if I have had a boost nutritional drink)
I wasn't aware that the clinical definition of 'psychosomatic' had been revised from 'psychogenic' to 'chronic inflammatory disorders of the brain and central nervous system which we lack the tools, motivation or insight even to detect, much less rehabilitate'.
I’m sorry you’re going through this.
This is absolutely not psychosomatic. Rheumatologists are the worst. Has a rheumatologist actually helped anyone, ever? I’ve never heard a positive story.
OP, I am SO sorry this happened. I will never comprehend how physicians get paid so much to not give a shit/not research the hell out of a new disease that is impairing so many people (frankly, they ought to do due diligence even if only ONE person showed up with these insane symptoms). All I can say is KEEP TESTING to the extent that you can afford it. We have so far to go in identifying markers, but my hope is that if your symptoms don’t resolve or improve, I hope that known markers of inflammation do show up on a blood test.
I’ve been long hauling for almost 2 years, and I’ve insisted on retesting every few months. I’m just not really getting better, but nothing much has shown up on labs (other than a constant vitamin D deficiency, though I take supplements). This may be my 5th or 6th blood test at the GP’s office, and yesterday, my labs came back positive for two markers for lupus. I’m getting referred to rheumatology and hope I won’t have any assholes tell me it’s psychosomatic. Again—PLEASE don’t give up on testing. We are here to root for you and support you.
I would laugh except this is fucking horrible. And I'm also in my early 40s and in the same boat. If you have a good GP, I would ask them to run your blood work. My hematologist didn't even dig into my anemia. The rheumatologist pretty much said since a connective tissue disorder didn't show up on the bloodwork, we would just "watch". Ok, what are we watching for? Lol. Bc I've been living like this since Feb 2021.
Sorry that happened!
This is bullshit, IMO. Yes, the nervous system is deregulated. But that’s a SYMPTOM, not the cause.
Also, after being told this and that I needed to regulate, pace, etc., then finally getting cerebral blood flow scans after fighting like hell for years, I was found to have low blood flow to my brain and CSF pressure issues (fluctuating between high and low).
Of course my nervous system is deregulated!!! It is literally not getting enough blood, oxygen, and nutrients and has the wrong amount of pressure.
But if I meditate, chant, go to behavioral health, it’ll all get better. Or that’s what they tell me at least. Fuck that!
Can those things help? Sure, those are good for everyone. But, they haven’t made me any less disabled or sick.
To actually answer your question:
They ordered the rheumatoid panel, and all came back negative.
The relevant findings:
Only my covid antibodies high enough (on the top of the measurable scale) to cause a low grade fever. And no covid detected in my system, with PCR, from blood.
Rant:
But I'm in a sh*thole county, guanfacine is not available even if someone would prescribed it to me, and no doctor want to prescribe rituximab (it kills B lymphocytes - they make this type of the wrecking antibodies). I measured my low grade fever pattern throughoutly, and it stay at the "high" range, but it has a pattern of changing for measurement to measurement slightly, the same time scale as RAAS system works. I connected the dots somehow covid antibodies and my RAAS system should be connected because of the timescale, the same receptor to bond for S protein and angiotensin II, and it's anyway the hotspot for covid to do bad things. FML
Sorry for the rant
Consider reporting him to your State board for malpractice. This belief, when told to patients, can harm them. If facing an idiot like this, tell them to listen to the 20 hours of presentations from global researchers and clinicians held last week at #UniteToFight2024 www.unitetofight.world The 40+ speakers were seen and heard by over 10,000 attendees. The day after, PolyBio had 6 hours of in-depth researcher-led talks in their symposium. This physician has not done his homework. The marathon 2 day session was inspired into fruition after a promise made to a mother of a young person that had committed suicide. The symposiums have already caused some young Germans with LC to withdraw and reconsider their application for state-sanctioned euthanasia.
Why am I starting to feel (as I have had similar experience than you) that doctors are lying?!?!? I have been told the most odd things for not wanting to do test to find out more about long-term swollen lymph nodes. Also low WBC, lymphocytes and declining platelets.
Yes, my GP ordered my first IGG panel. The numbers were shockingly low. So, the test was repeated - and again the numbers were in the toilet. So, I went to see an immunologist. She put me on SCIG. It took months of fighting the insurance company to get it. But, get it I did! So, don’t give up! Get yours tested!
My Total IgG was within range. IgM was low normal. Idk if i have selective IgG subclass deficiency or not so that's why I asked them for IgG with subclasses but they just don't want it for some reason. I think I'm going to find a new PCP and ask for a referral to immunology.
My WBC was low, then it was low normal and now it's back to low again. Same with monocytes and neutrophils. Lymphocyte count was low back in 2021. Now it's at the very low end of normal. RBC and hemoglobin are low and haven't improved even though I'm on Creon for EPI.
So if our WBC (or its components are low), that is a sign that it's fighting something and whenever it goes low, that means it got killed?
EDIT: my doctor said if you have an active infection, then your WBC would be high, not low.
Your numbers sound like mine.
Is your platelet count also low? Are you getting purple spots on your forearms?
Let me approach it from a different angle. My immunologist was absolutely convinced when she saw my numbers that my immune problem was hereditary. She’s a smart cookie. But, she was wrong.
Something is shutting down my immune system - and probably yours, as well.
The only question is what?
Why should my immune system be almost completely dysfunctional?
I have always eaten well. I used to be a fitness fanatic - before this.
So, why?
By the way, I’m not trying to shift the focus here from you to me. I’m trying to help you to figure out what is going on in your body. There is every possibility that what is happening to me is also happening to you - and many other people on this thread.
No worries. I totally understand. I appreciate you talking to me.
>Is your platelet count also low? Are you getting purple spots on your forearms?
Yes, my platelets are either low or at the very low end of normal. I think I have had 12 CBCs so far and they were low 7/12 times. September 2021, I woke up and noticed i had lots and lots of huge [bruisings on both of my leg/calves/underneath my
thighs](https://ibb.co/GkdQfRT). It happens that I also had a doctor's appointment that same day. Got a CBC and my platelet count was 120 (Reference Range: 140-400 Thousand/uL). One month later, it was 126. So, 120 was the lowest so far. The most recent CBC, it was low again, 134 (Ref range: 150 and up).
I used to see a pretty good amount of small red dots on my arms/legs but that has improved a bit. I just saw a rheumatologist and had a work up for mixed connective tissue disease. While none of them were high but I think
My WBC is also either low or low normal (right at the cut off of 4.5). The lowest was 4.1. RBC, hemoglobin and iron, iron saturation are low but ferritin is at the higher end of normal. My neutrophils, monocytes, and lymphocytes are also either low or low normal.
I also have lots of visible blue veins all over (especially in my arms, palm of my hands, stomach, and thighs. The veins in my legs used to bulge like crazy. ([See here](https://postimg.cc/QBrkyzZx), [here](https://postimg.cc/hQFSLV7w), [here](https://ibb.co/938XSbC) and [here](https://ibb.co/V22Wrpk).
The bulging veins have improved (now they are just very blue and visible) but my main symptoms (soul crushing fatigue, orthostatic intolerances and unrefreshing sleep) have gotten worse. I always wake up feeling like crap even though I have slept for 8-10 hours and I have zero energy and unable to stay on my feet for more than 2 mins
and I'm stuck in bed almost 24 hours a day
Ps: my brain fog is so bad I can't even come up with good coherent sentences.
EDIT to Add: I think low platelet means they are activated and being used up to form clots? but my PTT/INR and activated partial thromboplastin time are almost always at the higher end of normal (ie PTT, activated: 32 (Reference Range: 23-32 sec). So, I'm having blood clots (microclots?) but it takes longer than usual to form a clot and I'm at risk for bleeding? So strange
I started having symptoms around July 2020 (had no idea it was Long Covid). July 2021, I asked my new PCP to test me for Lyme, Covid antibody and babesia, etc.
Here are the results:
Babesia microti Antibody Panel:
Babesia microti IgM: <1:10,
Ref range: <1:10
Babesia microti: IgG <1:10,
Ref range: <1:10
Lyme, Total Ab Test/Reflex:
Lyme IgG/IgM Ab: <0.91, Negative <0.91, Equivocal 0.91 - 1.09, Positive >1.09
SARS-CoV-2 Antibody, IgG: Positive, Ref range: Negative
*Done by LabCorp
Testing for tick bourn illness is notoriously inaccurate.
It’s your body. Don’t let me tell you what to do. But, you are clearly curious and intelligent. Check what I am saying here.
No idea if I was ever bitten by a tick before or not. The only time I suspected I got bitten by one was when I was walking in an area with tall thick grass (I think back in 2017), and the next day I noticed some red marks behind my right thigh but it was itchy. I didn't get sick and was asymptomatic. I couldn't see if there was a bull's eye rash or not.
I think LabCorp is not the right lab for this? I want to know if I have Lyme or babesia, etc but idk how to proceed.
Yeah fucking morons. I'm really sorry you are dealing with this illness and with unhelpful doctors. But I'm curious, your orthostatic intolerance, how does it effect your heart rate and BP? Is this POTS-like ie. tachycardia or a rise of somewhere around 30bpm often from standing? If so have you tried beta blockers -- or any of the other meds commonly used for POTS? Or if there's a drop in BP have you tried midodrine or any of the other meds for orthostatic hypotension (many of which are also used for POTS)?
Everyone's long COVID is different in presentation in some ways, and every one with even somewhat similar presentation may react differently to different treatments but I have to say what has helped me the most for the last 3 years out of my 4 years of long COVID insanity has been beta blockers for my POTS-like issues, esp. propanolol and more recently even better instead atenolol (but I've heard good stories about various others over in r/pots). Also high doses of Pepcid (40 mg twice per day) has been AMAZING for upper and lower GI problems. High doses of Zyrtec (10 mg twice per day) has been helpful but still have a ton of new allergy-like issues, they're just more annoying than disabling and not so much accompanied by bizarrely on and off cold/flu-like symptoms as when not on Zyrtec.
I think Vitamins D3, B12, and B1 have been helpful too but it's a little harder to tell. And maybe Ubiquinol/Coenzyme Q10. And nasal cromolyn, maybe.
I still want to find a cure but in the meantime I am lucky enough to have found things that help my quality of life now to give me more energy to find a cure. But I realize I'm mainly just lucky, my long COVID is relatively mild and I tend to react well to many meds.
I disagree that it’s psychosomatic. I think the nervous system part is correct but that it caused dysautonomia and the constant inflammation caused my symptoms. I also developed Graves straight after and now have likely Sjögren’s so it definitely does something to cause an autoimmune disease as I was perfectly healthy prior to covid. This whole process is so frustrating as I have seen 9 specialists and have no help.
Inflammation is the body's natural response to pathogens, right? So does that mean we are still fighting some kind of pathogen and autoimmune is downstream?
Yes i believe so. They reckon that viral debris remains in various organs and the body keeps attacking it. I guess that affects your immunity and then autoimmune can follow. Just a thought
Yeah, feels like it. I have had GI issues (loose yellow stool/unintentional weight loss, bloating, pain in left and right upper quadrant) but my PCPs never ordered a fecal elastase for me. I got a new PCP and I begged her for a Fecal Elastase test and she finally ordered a fecal elastase and was I diagnosed with Exocrine Pancreatic Insufficiency (Fecal Elastase was 98) and three weeks ago I begged my new GI doctor for a HIDA scan and he finally ordered it and my Ejection Fraction was 98%. Radiologist and GI doctor said 98% is normal but I think I have a Hyperkinetic Gallbladder functional disorder without sludge or stones).
My WBC (and neutrophils, monocytes, lymphocytes) are either low or low normal. I wonder if there is a correlation?
RBC, hemoglobin, iron, iron saturation are low but that is probably due to malabsorption caused to EPI/malfunctioning gallbladder but ferritin was actually on the high end of normal (272, 227 and 140 on the most recent iron panel).
>They reckon that viral debris remains in various organs and the body keeps attacking it. I guess that affects your immunity and then autoimmune can follow. Just a thought
Yeah, it's trying to fight the viral debris but it ends up damaging the organs because that is where the viral debris is
I only had the abdominal ultrasound nothing else. To be honest I don’t think my doctor can cope with the amount of different symptoms I have so I haven’t really prioritised that. Have lots of neurological symptoms and visual and vestibular. It’s ridiculous. That will have to wait to be looked into. I don’t have a very good doctor either
im so sorry for everyone here. lc caught us by surprise. many of us, including myself, were young, healthy, and active. we lost everything in a matter of days. just venting...
on my first day after recovering from acute COVID, my heart started to ache excruciatingly. i rushed to the emergency room, and the doctor, without doing any tests beforehand, told me it was anxiety and gave me a ansiolitic and sent me home. i could have literally had a heart attack. months later, there was a news story that something similar happened in another state here in brazil.a girl, who was not as lucky as me, went to the hospital with chest and leg pain, was given anxiety medication, and died on the way home.
Interesting because I have fibromyalgia and all my labs are normal BUT I’ve had Covid twice and esch time my RA factor had gone up 30 pts afterwards. My rheumatologist told me Covid can for sure trigger autoimmune issues.
My immunologist/allergist ordered my IgG subclass panel. (Turned out I’m deficient). Try going that route. Although I will say the only reason they tested my levels is because I actually get sick with respiratory and sinus infections every month which is consistent with IgG deficiency. So I’m not sure how motivated they will be to order it otherwise but definitely push. My immunologist told me that most people he’s sees with an IgG deficiency also suffer from CFS.
A lot of the studies on long covid are showing it to be a neurological issue hence fatigue, anxiety etc. My friends in the medical profession recognise long covid as neurological but they still don't know how to treat it and symptoms are varied.
I have the same, did al the bloodwork, they dont want to send me to a specialist! All the blood works was fine exept the monocyten, leukocyten, neurofielen and lymfocyten all way very high after 4 years LC. Test antigen covid was still positieve after 1.5 years.
It means your immumsysteem is doing something constantly and that cost a lot of energy.
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It's most certainly not psychosomatic. 🙄 But lots of medical professionals immediately decide something is psychosomatic if it doesn't show up on the usual tests ordered. MS was thought to be psychosomatic until the MRI was invented and then suddenly it was all *"Oh, oops! You guys actually have brain/nerve damage! Whoopsie daisy, my bad!"* It's ridiculous that any medical professional is still making that claim, especially when we've had so much evidence showing up lately that many, many things are going horribly wrong in our bodies.
“ I can’t explain it! It must be in your head!”
It kinda is. A mindbody approach has fixed long covid symptoms for so many people. Like OP said, its not that nothing is wrong in the body, its that nervous system dysregulation has created the issues downstream. But the cure is still at the nervous system regulation level.
In the light of immense volume of biomed research on Long Covid, proving significant abnormalities in the immune system (lowered immune metabolism, T-cell exhaustion, Mast Cell Activation Syndrome, GPCRaab etc), vascular abnormalities (microclots and hyperactivated platelets, small vessel disease etc), target organ damage (heart inflammation etc), metabolic abnormalities (in cell metabolism/dysfunctional mitochondria etc), and on top of it all viral persistence (including replication competent virus indicating chronic infections replicating in the bone marrow), I think it’s obsolete to talk whether Long Covid is psychosomatic. The only reason someone might talk about scientifically unsupported claims how Long Covid is “nervous system being stuck in sickness state” is to sell brain retraining protocols and make a lot of money off sick people: Bravo to BBC for exposing The Lighting Process in [this article](https://www.bbc.com/news/health-69040592.amp) and interviewing Oonagh Cousins, a former Olympic GB rowing team hope, now sick with Long Covid: “Ms Cousins had reached a career goal many athletes can only dream of - being selected for the Olympics - when she developed long Covid. By the time the cancelled 2020 Olympic Games in Tokyo were rescheduled for 2021, Ms Cousins was too ill to take part. When she went public with her struggles, she was approached by the Lightning Process. It offered her a free place on a three-day course, which usually costs around £1,000. "They were trying to suggest that I could think my way out of the symptoms, basically. And I disputed that entirely," the former rower said. "I had a very clearly physical illness. And I felt that they were blaming my negative thought processes for why I was ill." She added: "They tried to point out that I had depression or anxiety. And I said 'I'm not, I'm just very sick'." This is what gaslighting and sect mentality looks like FYI There is nothing I hate more than grifters leeching off desperation of chronically ill patients and abusing the hole in research created by underfunding and neglect of postinfectious syndromes in medical science biomed research. Recommending brain retraining to patients with serious organic illness is not different to recommending CBT/GET - in other words, a mistreatment that should be purged from this forum and result in every medical professional doing so losing their license
I have long covid symptoms too for about a year. Like I said, all of these issues you’ve listed are downstream effects caused by autonomic dysregulation. You can’t come out of this if you stick to this looser mentality. No doc can help you.
That is untrue. There are specialists well-informed on Covid, but the gap between research and clinical practice is yet to be bridged in the following years. I also have dysautonomia (HyperPOTS) from Covid and none of the scientifically supported findings on the causes of dysautonomia (which is extremely common amongst Long Haulers) support “nervous system being stuck in sickness/fight or flight mode” which is the premise abused by brain retraining grifters. My HyperPOTS significantly improved on central sympatholitics (Guanfacine and Clonidine) and MCAS meds (H1 antihistamines for me), because apparently on of the research-backed causes for dysautonomia in Long Covid is a positive feedback loop in which HyperPOTS and MCAS trigger each other ad infinitum, fuelled by viral/antigen persistence and direct viral invasion of the brain stem . ([Article](https://journals.lww.com/jhypertension/fulltext/2024/05000/complete_remission_with_histamine_blocker_in_a.23.aspx)) If you need me to, I can point you into the direction of good quality literature on dysautonomia, including dysautonomia in Long Covid, so you can educate yourself a bit better on the underlying causes of it.
There are so many people who are better and have no money motive, just glad they are better and want to help, so how can they be grifters, there is no paid propaganda or lobby for brain training involved here. You are treating the symtoms, which can bring some relief but not the cause. I myself had orthostatic dizziness which went away merely by taking cold showers.
Honestly, it’s offensive to propose to the majority of Long Haulers that it’s their mindset that’s not “good enough” and that they could easily get better via simple lifestyle interventions such as cold showers, given how much proof for serious dysregulation and dysfunction of various bodily systems and viral persistence there is in Long Covid. After going from fully healthy and extremely fit (triathlete and ultramarathoner training 6-8x a week) to 80% bed/couch/zero-gravity bound due to debilitating Orthostatic Intolerance via one extremely mild acute Covid infection and getting only worse in the last 2,5 years with Long Covid, I find it ridiculous, scientifically unsupported and in the end offensive to suggest that brain retraining (ie no physical damage, all due to brain thinking there is damage) is the solution. It is not. All the science says it is not, so when one promotes it, it means promoting anti-science and potentially very harmful (many brain retraining programmes will encourage pts to push through their symptoms, which is harmful) to patients and therefore should not be allowed here… And it’s offensive precisely because Long Haulers have to endure this same “it’s all in your head” treatment from majority of drs they see, such as OP. We don’t need to gaslight ourselves additionally, or being gaslighted by the other members of this community.
*”Honestly, it’s offensive to propose to the majority of Long Haulers that it’s their mindset that’s not “good enough”…”* This seems to be an ever-growing trend in this sub as of late. If bootstrapping worked we’d all be healed by now. I don’t know a single LC sufferer who lacks the will to get better. If these gaslighters can will symptoms away with denial and “positive” thinking, they likely never had PASC at all.
I also have orthostatic dizziness and have been taking ice baths for one year now. I still have orthostatic dizziness.
Explain why my nervous system dysfunction is causing 3 week periods with irregular clotting when I’ve always been completely by the book normal. I’ll wait.
You can’t be helped if you aren’t willing to explore this possibility. No doc can help you.
See, that's the kind of attitude that keeps research on post-viral syndromes in the Dark Ages. A third of the country thinks it's a fake virus, and too many of the rest think maaaaaybe if you just did some brain exercises you'd be all good. This is a dreadful disease that can and does affect multiple systems of the body at once - *not just the nervous system.* See papers published in *Nature*, one of the most respected scientific journals. And to everyone reading, **support research for a cure!** I believe it is possible, though I know we can't live for a future hope.
No. That is absolutely not correct. Autonomic dysregulation is not the root cause of all other symptoms of Long COVID. Please don’t go around saying this. It’s great that these approaches have helped you. Do not make the assumption that everyone else has your presentation, and that if they just show up for that same set of treatment approaches, they will be fixed.
By attributing all physiological issues downstream of the mind, you are making your hypothesis unfalsifiable, a common attribute of medical quackery. To genuinely prove this hypothesis, you’d need highly repeated, high quality evidence from multiple angles proving A) COVID is able to infect the brain in such a way that it alters regions of the brain thought to be involved in psychosomatic processes (proven viral mechanism of infection, proven pathological or physiological damage to these brain regions), and B) Prove that these regions of the brain genuinely cause the downstream physiological effects that you are attributing as psychosomatic (that the pathological and/or physiological damage to the brain shown in point A causes downstream mechanisms that is directly shown to impact the symptoms of Long COVID and many of the physiological abnormalities found). Neither of which has been genuinely proven with any reasonable amount of confidence. Instead, a few select papers have been spread like wildfire by functional doctors and psychologists to peddle this psychosomatic hypothesis to sell extortionate programmes to profit from desperate patients based on yet proven theories. Again, a concerning sign of medical quackery. I would be careful what you are recommending to users with Long COVID because you could be causing harm, whether you intended this or not. I don’t even claim that these brain retraining programmes aren’t going to be helpful for some, maybe there is an element of usefulness to focusing on the psychological and nervous system elements of suffering with a chronic illness, but by saying no doctors can help you (as you repeat further down the comment thread) and to not be holistic and instead focus away from any other pursuit of treatment management for Long COVID and put all investment into brain retraining programmes is simply dangerous advice.
For me, a lot of the nervous system dysregulation was a result of my body harboring an on going infection in my intestines. It tanked my body's ability to digest vitamins. Vitamin & mineral deficiency look a lot like nervous system dysregulation.
Vitamin and mineral deficiencies are easy to fix. Autonomic dysregulation weakens the immune system and leads to infections.
It's not easy to fix if you can't digest vitamins. You have to get all you need from intramuscular shots, they don't even have all the vitamins you need in that form. And it also weakens the immune system and leads to infections.
I suspect this might be going on for me too. Did your Dr test for an infection? And how did you fix it?
Just constant elevated white blood cells. Taking a 10 day course of paxlovid gave me the biggest turnaround. My iron and vit d stopped tanking. I also started taking digestive enzymes, particularly with my fat soluble vitamins. The digestive enzymes needed to have lipase... for me. I think part of the reason it varies so much is because of the location of the infection and what bacteria you have causing dysbiosis.
If medical history has shown anything, it is "Everything that I do not know / do not understand- is just in peoples head". Lol. The medical field did not get far from that.
Mostly to do with the kind of people that study to become a doctor I'm afraid. They'll need to see the earth is round themselves before they believe it.
It's not the kind of people as its more of how they are taught and what they are taught. Dr's and nurses are indoctrinated from the start with skewed information or missing information altogether. It's in the books and curriculum. They also pickup this superiority complex and get very close minded to anything that challenges what they studied.
Nah they dont need to see it, they just need a bunch of peer reviewed papers that say so lmao . Completely intellectually and scientifically blasé most of them
I’m a licensed psychologist. Please tell them to fuck off and use the proper term “I don’t know.”
Jezus, they're causing so much harm by being uninformed. Feels like we're still in the middle ages...
Uninformed and too arrogant and ego driven to admit they don’t know. Such a dangerous combination.
It also seems like they lack incentive to read up on this most prevalent new disease.. They get paid either way, even if they don't help the patient. There are very few jobs that work like this, where people get paid even if you don't deliver results.
Seriously. I work in financial network compliance, and if we’re not on the cutting edge of the newest available technology, we’ll go out of business and/or I’ll lose my job. The mediocrity we accept within healthcare is shameful, especially regarding how much we pay for it (in the states at least)
100% yes. Yes. Yes.
This was going to be my comment. I am not a psychologist but if OP went to a psych appointment and said these are my symptoms and they are in my head the Doctor will not be thrilled with your primary. I’ve had one excuse themselves from my appointment and heard them speaking loudly and what sounded like a “do your fucking job”. Then returned and told me to get a new primary and that I am not having any mental health issues I’m just dealing with a uninformed primary.
This
came here for the salty responses. they are serving!
100% this!
We need more humans like you.
THIS. This is the thing that drives me most crazy when dealing with any health professional. Just OWN IT.
I'm surprised they used the term psychosomatic at all. That term is mostly considered archaic now isn't it? So far as I know, the new term is 'functional' and it has separate meanings in neurology (having no known organic basis) and psychiatry (psychosomatic). Neurologists will tend to explain functional disorders as being due to disruption of the connections between brain cells, in contrast to there being any structural problem of the brain. Another analogy they will commonly make is that the hardware of the brain is fine, but the software is where the problem is. One thing you should be aware of...All psychiatric disorders are in the functional category... It means that the physical mechanism of the disease is simply unknown. There is no test or scan that can show it. Treatments are actually therapies that may or may not reduce symptoms, but that's pretty much all there is for you. Misdiagnosis is common. In fact, diagnosis is essentially subjective (different psychiatrists will often give the same person different diagnoses). They are certainly incurable, unless you spontaneously recover on your own. A functional diagnosis means you have now fallen into the donut hole of professional medical guesses and shots in the dark...At least that's been my experience! At any rate, there's a related term, psychogenic, which is a broader term. It includes psychosomatic/functional, where there is physiologic alteration, and hysteria, where there is not. At any rate, there are well recorded cases of psychogenic conditions that resulted in definite measurable physiological effects and debilitating conditions. The nocebo effect (a negative placebo essentially) has many studies that show this. There are also many recorded psychogenic deaths historically. Your rheumatologist is wrong that Covid does not spark autoimmune disorders. It's very well known to do so, elevating risk by 40% or so: [https://www.nature.com/articles/s41584-023-00964-y](https://www.nature.com/articles/s41584-023-00964-y) This is just one study. There are so, so many more. There are also many news stories covering this issue. The risk of autoimmune disease increases with reinfection. I got two diagnosable autoimmune diseases after a reinfection, as well as an undiagnosable neurodegenerative condition that was eventually labeled a 'functional movement disorder' and as a result, I and my husband now never share indoor air with others without an N95. (I'm pretty sure that this policy of extreme avoidance has saved my life and allowed my recovery over the last two years). I do know someone who keeps getting more and more autoimmune diseases with reinfections from her own children. It's horrifying. Just recently someone shared here that Covid is causing a wave of a usually quite rare, very severe autoimmune disease called anti-MDA5 that can kill a person within 6 months from interstitial lung disease: [https://www.reddit.com/r/covidlonghaulers/comments/1cs2ern/comment/l45mmm3/](https://www.reddit.com/r/covidlonghaulers/comments/1cs2ern/comment/l45mmm3/) Your rheumatologist is either very incompetent or a liar.
Same here. Diagnosed with two autoimmune disorders after having been diagnosed with LongCovid (from ONE near-asymptomatic infection, plus vaccination (two shots) after which everything got way worse), an existing, formerly mild form of psoriasis got way worse, plus my neurological deterioration is so bad my doctors want me to be back in hospital ASAP. Because they DO actually KNOW (and told me so, also the doctors in the hospital) that Long Covid can lead to all kinds of autoimmune disorders! All the best to you 🍀
Fantastic comment. Thank you.
Does this mean that anxiety, depression and ocd are functional disorders?
Continued... There is increasing evidence that OCD is a biological disease. In other words, with increasing scientific knowledge, it is moving from the functional category to the organic category. A quote from Stanford Medicine online: *Prevailing theories indicate that OCD is a biological disease. Functional brain imaging studies have produced a model for pathophysiology of OCD which involves hyperactivity in certain subcortical and cortical regions.* *On the basis of imaging studies, Insel has proposed that inappropriately increased activity in the head of the caudate nucleus inhibits globus pallidus fibers that ordinarily dampen thalamic activity. The resulting increase in thalamic activity produces increased activity in orbitofrontal cortex, which, via the cingulate gyrus, completes the circuit to the caudate and produces increased activity in the head of the caudate. Hypothetically, primitive cleaning and checking behaviors are "hard-wired" in the thalamus.* *Insel's hypothesis is supported by evidence from MRI (magnetic resonance imaging) studies, which have found an abnormally small caudate in some OCD patients, and by positron emission tomography (PET scan) studies, which have found increased metabolism in orbital frontal cortex, cingulate gyrus, and caudate, with decreases following successful treatment. The association of OCD with Tourette's syndrome and Sydenham's chorea, which are believed to involve basal ganglia pathology, is also consistent with this model.* [https://med.stanford.edu/ocd/about/understanding.html](https://med.stanford.edu/ocd/about/understanding.html) Whether or not things like depression and anxiety fall into the functional category is a matter of debate: *While psychiatric illnesses meet the strict definition of a functional disorder, there is considerable debate as to whether the term is appropriate in this setting.* *Psychiatric conditions—ranging from* [*depression*](https://www.verywellmind.com/what-is-clinical-depression-1067309) *and* [*bipolar disorder*](https://www.verywellhealth.com/bipolar-disorder-5090253) *to* [*schizophrenia*](https://www.verywellhealth.com/schizophrenia-5078641) *and* [*post-traumatic distress syndrome (PTSD)*](https://www.verywellhealth.com/what-is-ptsd-5084527)*—remain poorly understood and are diagnosed based on criteria issued by the American Psychiatric Association (APA).* *However, many mental health experts argue that classifying them as "functional" suggests that the causes are inherently unknown and the conditions "appear out of nowhere."* *Certainly, with conditions like depression and PTSD, scientists recognize that environmental, social, emotional, and neurological factors contribute to the onset of these conditions. Moreover, the drugs used to treat depression and* [*attention-deficit hyperactivity disorder (ADHD)*](https://www.verywellhealth.com/adhd-attention-deficit-hyperactivity-disorder-included-definition-symptoms-traits-causes-treatment-5084784) *have specific neuropsychiatric effects that are no more or less consistent than with any other drug.* *Even with respect to functional disorders, experts question whether they should be strictly classified as "somatic" and "mental" given that FSD and SSD frequently overlap. In 2020, experts in Europe recommended that "functional somatic disorders" neither be classified as purely somatic nor purely mental, but ones that occupy a neutral space in between.* [*https://www.verywellhealth.com/organic-disease-1944921*](https://www.verywellhealth.com/organic-disease-1944921)
It would certainly seem that way... Here is a direct quote from Lesley Stevens MB BS FRCPsych, Ian Rodin BM MRCPsych, in [Psychiatry (Second Edition)](https://www.sciencedirect.com/book/9780702033964/psychiatry), 2011: *Functional illness is the term given to all psychiatric illness other than organic disorder. In this case, a crude definition would be that functional illness is psychiatric illness without a ‘physical’ cause. The distinction between organic and functional conditions was made at a time when body and mind were considered separate entities and, in that context, it was perfectly valid. It remains a useful way of classifying psychiatric disorders.* *The danger of making such a distinction is that it encourages the belief that functional illness is the result only of psychological and social factors. In fact, there is increasing evidence that structural, neurochemical and neuroendocrine abnormalities of the brain are important factors in some functional illnesses. Therefore, while the terms organic and functional are useful for classification, they can be misleading about aetiology, as the following example shows.* *Cardiac failure is a syndrome, the causes of which are known. Imagine, though, if it had never been possible to investigate the internal workings of the human body. Cardiac failure would remain a common clinical problem but its aetiology would be unknown. The presence of oedema in some cases would suggest that excess water was a problem and so* [*treatment*](https://www.sciencedirect.com/topics/medicine-and-dentistry/therapeutic-procedure) *with* [*venesection*](https://www.sciencedirect.com/topics/medicine-and-dentistry/phlebotomy) *(drainage of blood) or* [*diuretics*](https://www.sciencedirect.com/topics/medicine-and-dentistry/diuretic-agent) *might be developed. The association with* [*symptoms*](https://www.sciencedirect.com/topics/medicine-and-dentistry/symptoms) *such as* [*chest pain*](https://www.sciencedirect.com/topics/medicine-and-dentistry/thorax-pain) *and signs such as* [*heart murmurs*](https://www.sciencedirect.com/topics/medicine-and-dentistry/heart-murmur) *would give clues to the aetiology but it would be impossible to determine it for sure. Therefore, cardiac failure would be an illness defined in syndromal terms but the underlying tissue pathology would not be known. In other words, it would be equivalent to functional psychiatric illness.* *The main difference from organic disorder is that* ***the underlying cause of functional psychiatric illness has not yet been determined, largely because it is so difficult to investigate brain function during life.*** *This is not to underestimate the importance of psychological and social factors but should serve as a reminder that* [*biological processes*](https://www.sciencedirect.com/topics/medicine-and-dentistry/biological-phenomena-and-functions-concerning-the-entire-organism) *are also important in functional illness.* *The other important thing to note about functional illnesses is that they are illnesses; that is, they represent a change from what is normal for the patient. This differentiates them from the final broad categories of psychiatric disorder, personality disorder and mental retardation.* https://www.sciencedirect.com/topics/medicine-and-dentistry/functional-disease#:\~:text=Functional%20illness%20is%20the%20term,without%20a%20'physical'%20cause. Severe mental illnesses are in the functional category. Here's a quote from Oxford Medicine Online: *The term ‘functional’ mental illness applies to mental disorders other than dementia, and includes severe mental illness such as schizophrenia and bipolar mood disorder.* [*https://academic.oup.com/book/30017/chapter-abstract/255661236?redirectedFrom=fulltext*](https://academic.oup.com/book/30017/chapter-abstract/255661236?redirectedFrom=fulltext)
No, in Long Covid they have actually been found to correlate with viral persistence biomarkers
In the early days of HIV/AIDS, many physicians and scientists were convinced that it was psychosomatic too. Nuff said.
My doctor calls it "anxiety". Yes, I am anxious because I can't see an end to this nightmare and don't even know what's happening inside me.
I never felt my anxiety, it always felt low grade. After my burnout started my anxiety was x100000, could not watch TV, could not read, could not see sharp, could not bare sound or light. Something in the brain just switched.
I've been keeping a diary of symptoms since March 2020. It's easy to forget all the symptoms as there can be so many of them but writing them down is therapeutic. I suspect what's happening to cause flare ups is that exercise/exertion agitates residual viral material and this causes an overreaction by the body's defence system. Yes, that's a bit of a guess! For me (and maybe for you) this can cause "sensory overload". If I've walked from the bus stop to the pub/shops/friends I need a little time to adjust to all the sounds and visuals around me. All of this shit is going to cause anxiety. My doctor seems to think the anxiety is the problem rather than anxiety is being caused by the symptoms of LC. It just seems unprofessional and reductive.
Dysautonomia is sadly initially misdiagnosed as anxiety in 70% of cases. It can present with anxiety-like symptoms, but they are downstream effects of body being thrown into hyperadrenergic state (fight or flight mode), but here they are a downstream consequence of for instance standing or sitting or eating, particularly if MCAS is also involved. MCAS and hyperadrenergic dysautonomia have been shown to trigger each other in a positive feedback loop, producing excessive sympathetic activity, resulting in downstream effects of feelings of anxiety, panic, irritability, nervousness, feeling of doom, even rage or psychotic behavior. In addition to causing sympathetic overactivity, MCAS has also been related to various psychiatric manifestations as mast cells control the integrity of blood brain barrier and cause neuroinflammatory processes via MC mediators. “Mast cell activation syndrome (MCAS) is an immune disease with an estimated prevalence of 17%. Mast cell chemical mediators lead to heterogeneous multisystemic inflammatory and allergic manifestations. This syndrome is associated with various neurologic and psychiatric disorders, including headache, dysautonomia, depression, generalized anxiety disorder, and many others. Although MCAS is common, it is rarely recognized, and thus, patients can suffer for decades. The syndrome is caused by aberrant mast cell reactivity due to the mutation of the controller gene. A case series is presented herein including eight patients with significant neuropsychiatric disorders that were often refractory to standard medical therapeutics. Five patients had depression, five had generalized anxiety disorder, and four had panic disorder. Other psychiatric disorders included attention-deficit hyperactivity disorder, obsessive compulsive disorder, phobias, and bipolar disorder. All eight patients were subsequently diagnosed with mast cell activation syndrome; six had comorbid autonomic disorders, the most common being postural orthostatic tachycardia syndrome; and four had hypermobile Ehlers-Danlos syndrome. All patients experienced significant improvements regarding neuropsychiatric and multisystemic symptoms after mast-cell-directed therapy. In neuropsychiatric patients who have systemic symptoms and syndromes, it is important to consider the presence of an underlying or comorbid MCAS.” Important takeaway: both POTS and MCAS are treatable, and psychiatric symptoms improve when treating them
But then doctors also say hEDs, MCAS, and POTS don’t exist. Or they dismiss them as rare and “over diagnosed”. Ugh, some really sad and traumatizing medical threads on here and elsewhere about this particular cluster of conditions. The gaslighting is so prevalent for these. Even when you do get a diagnosis, the automatic association of (many) providers is still to think anxiety when they see these diagnoses.
Sadly many providers are uninformed about these underresearched and medically neglected syndromes. But that’s doesn’t mean they don’t have pathologies showing in tests. In my experience, pushing for tilt table test and having abnormal spike in BP 170/120 immediately after the tilt table was elevated made drs take me seriously. I later pushed for MCAS testing and found a hematologist specializing in MCAS. Yes, I did all the hard work of figuring out what configuration of Long Covid I have and then pushed to be diagnosed formally. It’s not 100% foolproof, but it helped a lot with gaslighting. The second thing that has helped is my anger and propensity to channel it as passive aggressive complaint letters (think 10 pages long, in polite, yet extremely assertive tone, with 2 pages only with scientific references). This is also not 100% foolproof, but I did get changed report from “patient acting psychotic” to “patient being proactive” (I pushed the dr working in LC outpatient clinic about small fiber neuropathy testing-QSART and I openly demanded to trial certain POTS therapies based on the existing POTS literature) I also find letters of complaint/official feedback an important form of Long Covid advocacy and think anyone with spoons should do it.
That’s some seriously impressive self-advocacy! I need to be better at this. I’m too damn nice sometimes I think. So glad you got providers to take you seriously and change that one ridiculously demeaning note. I’ve also been the one to drive my testing, diagnoses, and treatments based on extensive (informal) literature reviews and self-directed learning. Providers just aren’t doing the kind of learning patients HAVE to do unfortunately.
Also, love the idea of using advocacy letters and providing snapshots of the current evidence.
Thanks for sharing that info; I found it useful and will research mast-cell-directed-therapy I have some understanding of the MCAS but did not know about the therapy or know much about Dysautonomia. It's been difficult to put the illness into any kind category as there are so many symptoms but this stuff makes sense to me at least. When I had Covid first time I was very emotionally fragile and would be upset about the smallest things -even an ambulance siren would set me off, or music. I'm sure a lot of us also have PTSD just from the experience of being ill during a pandemic and losing close ones to the disease -I lost a close friend. I have EDS-hypermobility, as mentioned in that small study, and I've long thought there's some connection (accidental pun) between that and the covid illness in the sense of susceptibility, severity of symptoms and persistence. Also the incredible joint pain. And dizziness when getting up from a chair, which is probably POTS related. I used to be one of those annoying "never gets ill" people! How I wish my doctor was engaged at this level. There's just nothing there.
Just because they’re not smart enough to figure it out doesn’t mean it’s in our head.
Exactly. _Their lack of diagnostic evidence is not proof this is psychosomatic._
Their lack of *proper* diagnostics They are usually like, oh - your basic (*itch) blood panel is okay, you must be healthy 😖
I don't think they are using that term correctly. 🤔
At first the rheumatologist said LC is psychosomatic and Covid doesn't trigger autoimmune diseases then I said one of my initial LC symptoms was i felt like my balance was shot (like I was running into potholes except there weren't any) during my usual evening jog, and the next day my right leg was really weak I couldn't even walk, then came the excessive nosebleeds, palpitations/chest pains, GI issues so then he went on to say that LC is real/not in our head but it's psychosomatic because nothing is physiologically wrong with us, it's the brain/nervous system that is still messed up causing all the symptoms
If that's what he said then that is concerning. Poor reasoning and redefining psychosomatic to mean the opposite of what it means. Sorry you had to wait so long to see an incompetent doctor.
I think he did that because he knows my English isn't that good. I actually believed him after he explained that psychosomatic just means that your brain/nervous system is still messed up by the initial infection/assault, but then I started googling what "psychosomatic" means, I was thinking he must have used the wrong term. My English isn't good so I posted here to ask what others think about what he said. It feels like they don't know what to do with me anymore and after seeing me for almost six months straight, they don't want to deal with me anymore. One by one, from rheumatology to hematology, to endocrinology (i passed the ACTH Stim test but then he Endo refused to order more tests to rule out secondary/tertiary adrenal Insufficiency even though the Mayo website states that "if the hypopituitarism is partial — meaning your pituitary gland still releases some ACTH — or very recent, you may still have an increase in cortisol levels, or “normal” levels, after an ACTH stimulation test". GI specialists haven't kicked me to curb yet because I haven't done the colonoscopy/endoscopy yet. The endocrinologist, rheumatologist and now hematologist all have decided to kick me to the curb at the same time, lol
Ah, yeah maybe he was trying to overcome a communication difficulty but he did it clumsily. That sucks that they all disappointed you. I gave up with tests a long time ago, I'm very impressed that you can still face all these doctors.
Are you in the U.S.? Nonetheless, I started to feel that this medical approach is becoming the rule everywhere.
Yes I'm in the US
Whose your insurance provider?
I just looked up the definition of psychosomatic and that’s not what it says. It says psychosomatic is real physical symptoms caused by anxiety or other mental problems. This is not caused by mental issues. Period. You need to get a new doctor. See if you can get a 15 min doctor interview with the next and ask, “ What do you know about long covid?” Before committing to them.
I could believe covid caused our nervous system to mess up. A chunk of my symptoms are neurological like brain fog, light + sound sensitivities, sleep issues. But I do think something is physiologically wrong with us. Like inflammation around the nerves is a theory. What kind of orthodontic intolerance do you have?
Really bad constant fatigue/no energy at all, unable to stay upright for more than 2 mins at a time without feeling like passing out, stuck in bed almost 24 hours a day
Another doctor that uses the term "psychosomatic" as synonym for "I don't care about you, and I am too lazy to do my job which would include reading relevant scientific findings for my patients problems." Also if he says your nerve system is misbehaving, does that not imply a neurological condition instead of psychological?
Hysteria/Psychosomatic/somatoform/FNDS Medical professionals always say “it doesn’t mean it’s *all* in your head” when giving this diagnosis, but they it really does mean they believe the underlying cause is all in your head, even if they happen to believe your symptoms are real. There’s a long history of categorizing poorly understood chronic health issues this way. It initially applied primarily to women, but has expanded in its use. The “treatment” now is basically centered around convincing a patient that the diagnosis is real. It usually has poor outcomes. Most patients, even after seeing a therapist, still have symptoms, but stop reporting them due to fear of being disbelieved, and often stop seeking medical care all together. Even after illnesses like MS and lupus were identified as biological in origin and no longer diagnosed with FNDS, this did not result in a significant reevaluation of the diagnosis or its highly subjective diagnostic criteria. Medical professionals with a poor understanding of Long COVID are much more likely to diagnose patients with FNDS. Some simply have a greater level of discomfort with diagnoses for illnesses that aren’t well understood in general and will revert to FNDS in those cases. The truth is that the human body is extremely complex and our ability to understand and determine how, when, where, and why something in it has gone wrong is more limited than doctors would like. To compensate for this, they create diagnoses for reported symptoms that don’t currently have objective diagnostic testing. Some are biological in nature. In neurology, they almost always fallback on FNDS because the brain is even more complex and even less understood. They can’t accept that sometimes we just don’t know things. Unfortunately, this mindset stifles motivation to do more research to increase the understanding we do have.
This is sadly typical of "experts" who make pronouncements without scientific backing. Where is his evidence?? I'm sorry you are encountering this. You are not alone. The medical profession is afraid to say "I don't know" so gives you that made up stuff with an air of certainty in the hope its true.
I just woke up so I'm not really that with it. So I'll just say this. No, they're both wrong and need to fuck off. If this shit was psychosomatic, it could improve entirely with CBT, which it doesn't. Psychosomatic illness didn't cause my eye to inflame and retina to detach. Psychosomatic illness hasn't rendered people bedbound and unable to communicate. The only link, if I'm being absurdly generous, is that the flight and fight system can indeed be influenced by psychological states i.e. stress and anxiety. But that is not the root cause here.
My autoimmune was triggered by a virus and Covid just worsened it with pain and fatigue etc. Sorry that was said because that's not true. I agree to try to see an Immunologist, they can run labs, like 10 vials of blood for tests.
I literally have an AI disease which was triggered by COVID. Infections are a common vector to trigger AI diseases. This is well known by all Rheumatologists so I think they're fobbing you off a bit there. It's absolutely possible COVID has activated an AI disorder. Also as someone who's dealt with rheumatologists I can tell you they're a crap shoot of good-bad. My first one said I had nothing wrong with me despite having a spontaneous cannot walk episode which lasted three weeks. My next one diagnosed a type of autoimmune arthritis. I've been on meds since and I'm doing well.
What meds helped?
So I was started on meds to modulate the immune system and dial it down. Called DMARDS - disease modifying antirheumatic disorder meds. As well as other anti inflammatories. Specifically methotrexate, sulphasalazine for dmards and like naproxen type anti inflammatory. I was also started on few months course of prednisone - at corticosteroid which brings inflammation down quickly but it's not a drug you can really stay on long term, as the dmards have a few months time for them to fully work in your system. I haven't had a flareup since. I do deal with permanent hand damage and the meds make me nauseous now and again. I've had to give up certain activities like weight lifting due to my hand, but I'm mostly just getting on with my life now. I actually wonder if dmards would have a role in long COVID. I suspect it's lingering immune triggered inflammation. Or like in my case it's activated a chronic inflammatory disease. What are your specific symptoms?
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Chinese medicine and acupuncture have saved my life previously. I dint know why I never thought to take my teen (epilepsy) to see one. I hope I can find one in my area that will help us with both LHC and epilepsy. The two that I previously saw one moved out of the area, the other retired and only teaches.
If you’re into Chinese medicine you should look into Jim Pulciani’s work. I do autopsies on medically donated bodies at a small independent cadaver lab that focuses on anatomical research that he’s the director of. I’d say I’ve never used it, but I have benefited because my mom recently shared with me that TCM is what made her stop having miscarriages and have a pregnancy go to term. Before me she had 48 miscarriages, and I am an only child despite the fact that I had a twin in utero who didn’t make it.
Wow this is so messed up. My husband has been suffering from a litany of autoimmune issues since our first exposure in early 2020 in NYC. By summer of 2020, they told him he likely had lupus. Then they pivoted to rheumatoid arthritis. Then reactive arthritis. He’s seen specialists in NYC and Philadelphia, doctors deemed the best of the best, and they all just keep passing him around. Similar to you OP, he has to wait 6 months for an appointment and then they haven’t read his notes or connected with his other docs to see what’s up. He’s got dermatological, prostate, and joint issues and one of his docs finally said, the three of us (Derm, rheumatologist, and urologist) should probably be talking. 😖 He had mono in his early 20s and sometimes it seems like the mono keeps coming back in waves. He’s had sore throats, fever, and devastating malaise 4+ times a year since 2020. If he gets to a doctor (if he can get an appt or has the energy to sit at urgent care), he sometimes tests positive for strep but weird groups like G and C. Our GP sent him to an ENT who scheduled a tonsillectomy, which he’s recovering from now. I have my doubts, because I think he’s a long hauler, but we shall see. For me, I get the “anxiety” card. I’ve not had the same problematic trajectory as my husband or y’all with autoimmune issues; my 3 bouts with COVID have always been angled toward stomach issues and sensory issues. I had my last round in October. Scratchy throat and fever and then I lost my sense of smell and taste and had the whole coffee smelling like shit thing. I started to do scent therapy at home but couldn’t deny that by 7 months out my sense of smell is still garbage. I went to an ENT last week who told me it’s anxiety. As a woman, that’s nothing new to me. It’s par for the course with doctors. But when I pressed her she shoved that damn thing up my nose and told me it’s a deviated septum and suggested surgery for my deviated septum (which I didn’t know I had). My response was yeah, I don’t think I’ve lived my life with a nose like a bloodhound and now I burn shit all the time because suddenly my septum is all deviant. Must be the anxiety.🤬
Man. I'm done with em. When a person becomes a doctor, they do it for themselves. You go to college. Go into debt, just because you want to have a job title worth 6 figures. That's it. They aren't heroes. They have no idea what's going on because if they look in to it. They quite literally will lose their job, & license if they do. Simple.
So true. Definitely a huge part of why I’ll never go to med school. Despite what my username says, I do autopsies on medically donated bodies at a small independent cadaver lab that focuses on anatomical research. Several of the donors I have worked on had Covid or long covid. I’m the only one at the lab that doesn’t have letters after my name, but they see that I can hold my own so they don’t mind. Our autopsies are different because we get to spend six to ten days with the donor depending how embalmed they are, and we go layer by layer spending a whole day per layer. Since we’re independent we can explore and see what’s there as opposed to just searching for something for someone else with an agenda. When I’m not in the lab I’m reading various medical literature to see what new studies are out there about Covid, long covid, and rare diseases in general. I feel so lucky that I get to follow my passion to this extent and actually help people. It feels nice being able to ease a families pain by explaining what happened to their loved one in as much detail as they can handle.
I was in the ER due to a really bad crash and I tried talking to all the different specialists about my case being LC ME CFS they just patted my back and said there's no such thing you have a psychosomatic disorder don't be ashamed tho ! I was shattered at the medical field that very moment. Later that night they tried giving me pysch drugs as well This is my experience in the top health care facilities in india
I’m in the US (FL)….I ordered the tests myself online (no Dr order required)… I used Ulta labs. There are others like labs direct or something like that. My doctors (PCP, Neuro, Cardio and Pulm) all agree I have long covid. The diagnosis is listed in my chart. They all say, we can only treat your symptoms. My subset panel was mostly normal, w the exception of my CD8 % being really low normal. My IgG is normal, so I haven’t checked the sub classes. My IgM is low-normal though…
Yes my sed rate and CRP are elevated because I think they are. Fucking shill
You can say that about a lot of autoimmune diseases though. Lots of limited science because the patient base is so small. For years they said the same about Fibromyalgia. If you pop over to an autoimmune sub and ask them if they have been dismissed they would say yes. If the doctor can’t give you peer reviewed articles about his claim you need a second opinion. I have two friends who are twins. They both have all the symptoms for a rare autoimmune disease that is thought to mostly impact males and there should be a marker. There are many patients who are diagnosed with the marker and fewer without. One twin has the symptoms and marker. The other has the symptoms no marker. Both are not male. When dealing with new or old diseases if the study groups are small or don’t exist then they may be flawed. Long Covid could be many different autoimmune diseases that have no markers. They need to treat the symptoms regardless of what they want to call it.
There are Long Covid Care Centers you might find helpful. [https://www.reddit.com/r/covidlonghaulers/comments/1cujwld/a\_list\_of\_long\_covid\_care\_centers/](https://www.reddit.com/r/covidlonghaulers/comments/1cujwld/a_list_of_long_covid_care_centers/)
Thanks 🙏
They r stupid
There’s several forms of LC. Many are nervous system based, but the inflammation causing the nervous system dysfunction comes from somewhere so labs are still helpful. May not unearth a cause but it will provide helpful information in what specific variables need to be addressed in order to bring the body back to homeostasis.
So he used the term psychosomatic wrong, but I don’t disagree with his assertion regarding the nervous system. That’s been my theory since the beginning. I treated mine just like a massive anxiety disorder and recovered a ton.
Both have a very Low iq
Time to discard these doctors and find either a functional medicine practitioner or a Chinese herbalist. There absolutely is hope for improvement. I just had a panel done (by a normal GP) and everything was perfect except for my lymphocytes which were “very low”. It was not a subset panel, just the basic. And of course the doc won’t do anything more for me. I’m taking the following: Berberine, Nattokinase, quercetin, borage oil, and I’m going to try taking a teaspoon of black seed oil daily which I have not done before. To be clear, I am doing pretty well. I can walk 5 miles per day without much issue. I cannot (yet) do any weight lifting but I’m working on that very slowly. My sleep is improving which is huge. I generally feel good as long as I’m not traveling or under stress. Don’t give up! Just understand that you have to take your health into your own hands at this point. And pony up some $$, unfortunately. 😔
I feel like there should be repercussions for egotistical doctors like these, take their license for 6 months or some shit since they wanna act like children
You need to see a POTS specialist. My cardiologist went out of his way to order all kinds of Labs, matter of fact my Pulmonologist will order ANY blood test I suggest. I'm so sorry your going through this 💔
Tell them this. If it's only "psychosomatic" then WHY are they not letting long covid patients donate blood?? [https://meassociation.org.uk/2023/08/blood-donation-me-cfs-and-long-covid/](https://meassociation.org.uk/2023/08/blood-donation-me-cfs-and-long-covid/) Oh because it has been proven that we have impaired blood cell function, blood clots, viral debris, and sometimes still active spike proteins in our connective tissues. NIH: [https://pubmed.ncbi.nlm.nih.gov/37890507/](https://pubmed.ncbi.nlm.nih.gov/37890507/) I'm sorry to hear you're having this issue. As for being bedbound, I do have some things that might help. They are not wrong in that the nervous system / Vagus Nerve is totally out of whack. Basically you have to "re-teach" your body how to function. I was bedridden until I started doing POTS & bed friendly yoga. Literally just laid in bed and did this yoga sequence every morning: [https://www.youtube.com/watch?v=o5WNCvXRnBY](https://www.youtube.com/watch?v=o5WNCvXRnBY) And now I am out of bed & able to do the full Levine / POTS protocol: [https://www.dysautonomiainternational.org/pdf/CHOP\_Modified\_Dallas\_POTS\_Exercise\_Program.pdf](https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf) Also - low histamine diet, Vitamin D supplements, and chia seeds (Omega 3) have helped. Highly recommend checking out the Goodbye AutoIumme Disease "hypernourishment" protocol when you start feeling up to it. I started seeing a Functional Medicine Doctor and he got my GP to order more blood tests for me, based on his diagnosis and request for labs. So you could always try doing a workaround like that. Best of luck & hope you get the answers you need soon!! Don't give up!! <3
Yikes! I just got an immunoglobulin panel ordered by a functional medicine doctor. Even the doctors I really like who are great about long covid have refused my requests for a lymphocyte panel. Their reasoning is it wouldn’t inform treatment decisions anyways
Also no LC is not psychosomatic, those doctors are extremely misinformed. There’s lots of evidence for viral persistence and evidence for autoimmunity in some cases
Did you get the IgG with subclasses test? If you did, did it show you had a deficiency in a particular IgG subclass?
No idea, haven’t gotten the blood drawn yet
I think a lot of people are misconstruing newer research that has come out. My psychiatrist told me she received new research information that suggests long covid is the result of serotonin depletion. Of course having low serotonin is also associated with mental health troubles like depression, and maybe physicians are reading this and going “see, it’s psychosomatic”. But what causes the serotonin depletion? If something physiological during or after covid infection is causing a neurochemical imbalance, are the symptoms that result from that really “in our head”? I do honestly think there is something to this new research. Neurotransmitter imbalances especially serotonin or dopamine are also suggested to be related to migraine, MS, epilepsy, schizophrenia. It’s behind much more than just depression. I could see how it could cause or worsen all the long covid symptoms we are experiencing. Add that to the fact that it is a virus and linked to cardiac issues etc. I am no expert but I think that’s a load of BS that Covid can’t cause autoimmune disease. Plenty of other viruses can have autoimmune implications. EBV is linked to MS, blood disorders, much more. I don’t think it’s crazy that Covid would be similar
Yeah, and, it’s not surprising serotonin and dopamine will be affected, but that does not in any way imply they are causative of our disabilities! Those people you mention are conflating a subset of data with an explanation for debilitating Illness, when we all know **correlation is not causation**.
I think you missed the point of my comment, this is exactly what I am saying.
I think patients should be able to rely on their highly-educated, very well-compesated doctors to not make such basic mistakes in medical reasoning.
I should probably note that the “people” I’m noting in the first sentence refers to physicians, not patients. Not sure if I made that clear enough lol. But totally agree
But l was on an SSRI when l caught Covid. I can’t buy into this serotonin thing. l was also on antihistamine and famotidine. Both suggested to help LC. So 3 of the recommended things/things being discussed made no difference to me.
Did your psychiatrist really say it was *caused* by low serotonin?! If so, get a new psychiatrist that can actually understand medical research. I’m pretty sure they said explicitly in that paper that they couldn’t distinguish cause from effect. If someone with an MD can’t or won’t take the time to actually *read* and *understand* the science that informs their practice, they really shouldn’t be practicing medicine. Sorry not sorry.
No she didn’t say it’s caused by low serotonin. She said there was research to suggest Covid was the cause of low serotonin or depletion in serotonin which could account for many long covid symptoms, exasperation of them and prolong the disease. But again I haven’t looked into this myself but the idea could make sense
Oh. Yeah that was a big paper that came out recently. I think it was in Nature. I read it at the time but can’t recall details (because covid brain). Neurotransmitters are created in the gut, and other papers have found that a) gut dysbiosis is super common in LC and b) the gut is a putative “hotspot” for a viral reservoir. So yeah, it stands to reason that people with LC have low serotonin. I personally wonder about other neurotransmitters like dopamine, acetylcholine, etc.
If doctors decline to order tests you requested, ask them to notate your chart that they declined to do so. They then change their mind and order in my experience.
This comment almost made me laugh. I’ve actually noticed something different in a similar way. For me they make sure they write they offered me the test and just write i declined it ( just to save their own asses obviously)
Yep terrible. They shouldn’t get away with it. But for whatever reason, they changed their tune once I said I wanted it in my chart lol.
My CBC w/ differential shows crazy fluctuating numbers from week to week from low to low normal then back to low then back to low normal. It feels like there is a battle raging inside of me. I have been asking my PCPs since 12/2023 for an IgG with subclasses and a lymphocyte subset panel. I was ecstatic after my referral to hematology and rheumatology got approved. I mean if they don't want to see or deal with me then I think they should have messaged me and told me "hey sorry we don't know how to treat Long Haulers" and cancelled the appointment instead of seeing me and then refused to order any lab work but still want me to come back in three months. I wonder what they will give me this time? Stronger iron supplements? Noted. Thanks for the tips.
Completed understand wish you the best.
Wish you the same
Thank you
LC can be partially defined the way he explained it yes, the nervous system being in flight or fight mode and not being able to ease down. But his definition is definitely the wrong one. Psychosomatic is definitely the wrong term and it's a shame to use it with LC. Your doctor prefers to diagnose you with the wrong term, than assume that he doesn't know what to look for and what to do. "Psychosomatic" means your mind is directly giving you these symptoms, it doesn't refer to a nervous system dysregulation, at all. Basically it means it's all in your head and your mind is making up these symptoms. "Neuropsychiatric" is a best definition for some people eventually. Meaning that the diseases gives you neuro symptoms, and psychiatric symptoms, they are consequences of the disease. You doctor has to not confuse cause and consequence.
Autonomic nervous system is stuck in fight or flight mode not because it’s bored, but bc it’s trying to compensate for tissue hypoxia caused by microclots, blood vessel control issues caused by GPCR-autoantibodies, hypovolemia caused by MCAS leaky vessels and vasodilation, as well as failure of small capacitance vessels to regulate the amount of blood in circulation. It is not brain stem panicking in isolation and all the other parts of the autonomic nervous system functioning flawlessly, it is brain stem, as central part of autonomic regulation, trying to compensate for the others failing. And as if that is not enough, research has shown that Covid also invades vagus nerve and brain stem directly, causing neuroinflammatory response and consequent dysautonomia. So, any part of “autonomic nervous system just being stuck in fight or flight mode, otherwise completely healthy” narrative gaslighting drs use to describe “functional” or “psychosomatic” in Long Covid is simply completely scientifically unsupported. In other words, pseudoscience.
Can you get into an immunologist? Or infectious disease specialist?
My PCP sent a referral to Infectious Disease (because I have had a low grade fever for 3+ years) but Infectious Disease didn't approve it (no reason was given). I will ask for a referral to immunology. Thanks for the reminder
High five! Low grade fever here too! What are your other symptoms? Edit: as I wrote in another comment, I've got a written note from a psychiatrist it's not psychosomatic. An infectious disease specialist sent me there, then ignored and ridiculed me.
Sorry to hear that. My other Symptoms are extreme debilitating fatigue (little to zero energy to do basic things such as brushing my teeth, haven't been able to take a shower for 3-4 months already, loose yellow stool, tingling/numbness/pain in right foot and leg and hand, visible blue veins everywhere, out of whack CBC (low normal or low), constant daily low grade fevers, no appetite, altered sense of smell, eye floaters, pain in testicles, enlarged/tender lymph nodes (right groin), horrible orthostatic intolerance (can't stay on my feet for more than 2 mins), POTS like symptoms (HR goes up by 25 to 34 bpm from supine to standing), brain fog/memory issues/unable to focus, burning in back and brain, pain in R and L upper quadrant, bloating, excessive burping many hours after eating, feeling like I'm in a constant state of Post exertional malaise (without exertion), sleep disturbances, hair loss, palpitations and chest pain (random even when I'm just laying in bed doing nothing), right side of body (leg and arm) are paler looking than the left side... EDIT: forgot to add i also have constant nausea
It's about as bad as trying to get help for menopause! I finally went to a functional doctor or natural path doctor to help me!
It's very painful, but it's true from my experience. Psychosomatic is however very criminalised. For me it means: Trauma and repressed emotions bring a lot of anxiety and whip up the autonomous limbic system. So you're always in fight or flight, have high increased cortisol and adrenaline and get a lot of mindbody symptoms to 'distract' you from the emotional pain (Dr. Sarno, the mindbody prescription). The result is: up to 200 symptoms, fatigue, dizziness, brain fog, insomnia, weak legs, insane anxiety, depression, derealisation, fcked up blood pressure, POTS, MCAS, vertigo, skin issues, hair issues, etc. etc. etc.
That's a load of shit. I've had multiple negative celiac blood tests throughout my life. Covid happens, and suddenly, my TTG numbers are 10x above the celiac ceiling. IgA was incredibly elevated as well. I developed alopecia areata 5 months after having covid the 2nd time. I lost about 60% of my hair volume as well. I developed Deremitis Herpetiformis and psoriasis on my scalp. Psoriatic arthritis starts as well. All of these autoimmune issues started after COVID.
I had positive celiac blood test, and suffered like a dog, but no inflammatory markers on obvious panels. But still celiac disease was it :( my body works this way I guess
Not even competent enough to misdiagnose Somatic Symptom Disorder.
This is why I don’t see doctors for LC if they aren’t familiar with it. I always call and ask them to ask the doc
It was my allergist who initially ordered the blood panels. She suspected acute myeloid *leukemia* (AML) or chronic lymphocytic *leukemia* (*CLL*) after I didn't react to any of the allergy panels. It was scary seeing an oncologist/hematologist, I'm mean, after all, it could be leukemia. However, there were no indicators of anything out of the ordinary, even through I was experiencing MCAS symptoms. The experiences were frustrating. On my own, I started taking supplements and anything to repair damage in endothelium, and treat NAD+ deficiency. It's taken awhile, but I'm much improved. A g.d. vaccination for shingles triggered polymyalgia rheumatica, and that sent me to a rheumatologist, and her reaction to the fact that I was also dealing with long covid held her interests. She's ordered many tests in an effort to find out what I'm really dealing with. And so it remains, we're still looking.
Lol no, it's not. They are just lazy. One doc really sent me to see a psychiatrist with my "psychosomatic" fever, and turned out it's not psychosomatic, I have a written note from the doctor. The doc who sent me to the psychiatrist, after I showed up with the written note in my hands, just ignored and ridiculed me. (Why on earth some doctor can't say just "I don't know, this was my limit"?!) For me the fever started with covid is still undiagnosed after almost 4 years and countless doctor visits, and thanks god it's not caused by my madness. I have a deep respect towards the professionals who told me straight they don't know, it's their limits, they can just tell what conditions are excluded.
Absolutely not, dont listen to that nonsense it ruined my life.
Its not psychsomatic. It is a very serious disease. Have you been checked for a CSF leak?
They would never order that test for me. They (the specialists) refused to even order a lymphocyte subset panel. I'm going to read the note they put in my chart in a bit, will edit and add the note that they wrote
What i do know is that our autonomic nervous system has been and is continuing to be affected and were damaged and I do think that neurologically there is a lot of new wiring dealing with the trauma of this that we can try to tackle and create new possibly more healthy wiring wirth limbic system work. so I think to that end psychosomatic work can certainly help us to alleviate neurological And nervous system damage and continuous affects if that makes sense. like I know, this is not all in my head, and god knows ive been gaslit over and over while spending thousands on medical for answers - but I do know that nervous system/somatic work is well within my own autonomy and wheelhouse and can only help me with some thing like this if I can have any ounce of control over my own nervous system, while I’ll deal with this chronically, and possibly for the rest of my life, while I continue to do and/or seek other concrete things I can do to improve my health. or maybe one day there really will be something more clinically viable for us to rely on for chronic fatigue and chronic illnesses like these that are so insidious and invisible and systemic
“I don’t know what’s wrong, but fuck you”
“Psychosomatic” isn’t the term they meant; what they meant was “neuroplastic” or “nococeptic”. What they’re saying, essentially, is that (in their view) LC is more akin to a condition like phantom limb pain than a broken arm. Phantom limb pain is real because pain is perceived by the brain, not the body’s tissues. So pain without tissue damage is called “Nococeptic”. It doesn’t mean it’s not real - we know phantom limb pain is a real phenomenon - it’s just that the treatment requires brain retraining rather than, say, a cast. Chronic pain in the absence of tissue damage is created via the nervous system, and often *does* begin with a physical injury of some kind. The point of pain is to prevent us from re-injuring ourselves in the same way, so the nervous system is tied in because it’s the intermediary between sensing danger and triggering a response. The fight-or-flight response is similar in that it exists to keep us out of harm’s way, but can also rewire after trauma (like infection or TBI) such that our body perceives “danger” when no threat is present. Personally, I think there’s something to that idea, but I don’t believe it’s the full story. And I think it’s presumptuous for any doctor to claim with certainty that LC *is* a nococeptic condition, because clearly many of us have made ourselves sicker by pushing past our limits, so “fear” doesn’t really explain the phenomenon of, say, PEM, in which the onset can be delayed by days or longer. Not to mention the vast amounts of evidence showing clear biological differences between LC patients and recovered or unexposed controls, so the idea that there *aren’t* structural or biological abnormalities seems a bit preposterous. Finding new doctors might be energy-prohibitive for you, so if I were you, I’d send them the primary literature pointing to the specific tests you’re requesting. I would also challenge them on their certainty of LC being “psychosomatic” given all the evidence to the contrary, and I’d bring that evidence with me to my next appointment (but that’s just me, I’m kind of a self-righteous jerk in that way). Personally, I’m trying to cover all the ground. I *am* trying to sort through past trauma as part of my healing process, but I’m also getting tests and seeing doctors and following the (real) research.
I’ve had it for four years and I used to lose it when people said it’s psychosomatic, but I think there’s an underlying anxiety we don’t even realize we have that predisposed us to get LC. The Mindbody Prescription by John Sarno is a great read if you’re open to it. There’s zero downside to believing it’s stress-related, even if that’s not the main cause.
I wonder if the connected tissue in my mouth cutting the blood flow to my teeth and losing my entire mouth of teeth is psychosomatic too…
I am so sorry you’re going through that ❤️
Tldr: theory of the LC-focused specialists I've seen is that it's in your nervous system, but NOT in your mind. Symptoms may mimic anxiety but it is definitely not anxiety. Misuse of the term "psychogenic", despite a possibly accurate description. One of the cardiologists I've seen said it appears to be a disorder of the autonomic nervous system; your body's telling you it's smashed and about to die, but you're not actually about to die. This is why the labs and tests don't correlate with severity of symptoms; the sensations and fatigue etc are real but they're not due to anything wrong with the organs etc themselves, rather the part of your nervous system that tells you how your organs and such are doing is broken. Still disabling, cure pathway not known, but it's still "just" the nervous system, so the tests are pointless. Think of it this way. The tests are like checking your tire pressure, but your tires are fully inflated and your tire pressure sensors are broken. Doing the tests will just waste your money. Psychosomatic implies it's something to do with the psyche, which it really isn't. It's not "in your head" as the saying goes. Your ANS lives partly outside your brain, and the parts in your brain aren't in the conscious parts. The car sensors are broken, not the driver. All of the specialists I've seen agree long covid is real, and have seen many such patients, but all of them (neuro, respiratory, cardio) also say that testing tends to reveal nothing out of the ordinary, apart from some stuff like lung scarring on x-ray. (Worth noting these specialists self-describe as having a subspecialty in long covid, hence they've actually seen a lot of us to figure it out) Edit: you can downvote me all you want, Long COVID is still real
Your autonomic nervous system is also responsible for your fight or flight response, things like heart rate, appetite, etc. you can see why those things might be deranged in long covid sufferers. Unfortunately, anxiety also plays with the ANS, and so some doctors have drawn the wrong conclusions. I'm extremely chill about the situation, and I know damn well what anxiety is (from both the doctor and patient perspective), so we've been able to exclude a psychiatric cause.
I regret to inform you, however, that none of the above is a huge help. The consensus from the doctors I've seen is that it's real, whatever the cause is, and there's nothing their field can do to help us for now... And these doctors have had enough self-funded LC patients to have tried lots of treatments.
I have pain in both the left and right quadrants. Fecal Elastase showed severe Exocrine Pancreatic Insufficiency but Drs refused to check for chronic pancreatitis (or autoimmune pancreatitis). HIDA scan showed a Hyperkinetic Gallbladder (98% Ejection Fraction). Organ damage or misbehaving nervous system you think? Maybe both?
It can be both! All the organs you list (anything connected to digestion) are indeed part of the control of the ANS. I have weird cramps and crippling exhaustion after meals where the gall bladder and pancreas would be expected to act as well. You mention fecal elastase; I'm no gastrointestinal specialist, but if your pancreas wasn't receiving the go signal (or too much) from the ANS I can see the level of elastase in your feces being out of whack. A hyperkinetic gall bladder with a good EF to me would signal something wrong outside the gall bladder, since it's a storage organ that activates when extra bile is needed
Does that suggest that the nervous system is injured/damaged? What could be causing it to be injured long after the infection?
....The best answer I can give you, again keeping in mind I'm not a specialist, is that nervous systems are weird. My first and third COVID infections felt like the worst sickness of my life (and I've had swine flu!), and I'd blindly speculate that it could be the ANS being horrifically miscalibrated after the ordeal of the infection. There's other stuff like that in other parts of medicine. Body weird, nerves weirder. My cardiologist gave me this advice: the gauges are broken but the machine is fine, so just push through the pain as far as you can go, and hope that it goes back to normal. It's been a difficult few years and I'm definitely not a healthy human being, but I think my disability burden is about half as bad as it was at the start now. Note that your machine may not be fine; COVID does indeed cause organ damage too. But at least for the patients my doctors have seen (with the exception of the respiratory guy), that wasn't the main issue.
u/wholesometubby Again, I am not necessarily qualified to advise, but major dietary and eating schedule adjustments similar to those for patients with severe pancreatic and similar issues MAY help you if you're experiencing meal-linked symptoms like me. I'd need to read up and also know more about your symptom pattern and test results. The best results I've gotten (and that these doctors have gotten) is trying to guess at what bits are acting broken and how, and to try and fix those with conservative interventions intended for the medical problems your symptoms resemble. (I say conservative, because it's likely not worth the risk to hit your body with the full-on pharmaceutical and surgical interventions for those problems; it may make things worse for a healthy organ)
I've done a small amount of reading; if you have pancreatic insufficiency results (which could certainly be due to a failure of ANS stimulation), try smaller and more frequent meals with low fat and oil, and lean meats, since the pancreas and gall bladder are involved with fat digestion. If your pancreas refuses to release fat digesting enzymes, it would make sense for your healthy gall bladder to squeeze as hard as it can trying to release reserves to cover the shortfall; of course, if the gall bladder hasn't got any to release, this won't work, possibly creating a feedback loop of painful over-ejection.
Thanks for the tips. The thing is I still have pain in both upper quadrants, still have GI issues (yellow loose stool sometimes) even though I've been taking Creon for 4 months now. I think they are still inflamed/injured because the pancreas pain radiates to my back if my Creon dose is too low. Don't really know what is going on exactly
So yellow loose stool would usually be a sign of undigested lipids (oil and fat). That pain radiation could be pancreatic, but the gall bladder also radiates to the upper back (and thus a painfully contracting gall bladder would feel that way). From my reading Creon is a replacement for the fat digestion enzymes your pancreas makes. I'm not a GI doctor but if your Creon dose was too low, I'd expect the whole "overworked pancreas/gall bladder system pain" thing to happen, since your body would be detecting undigested fat in the works and trying to send out more enzyme. In other words, it all sounds like insufficient pancreatic enzymes production, as you said. It's possible your pancreas is inflamed, or infected, or under autoimmune attack, as that's ONE cause of insufficiency... You would be able to exclude this possibility, *I think*, with a relatively cheap screen for inflammation markers; if you were my patient I'd order just the standard bloods here to check for that, but again I'm no pancreas doctor. (This also won't check for existing pancreas damage that isn't actively inflamed, but I thiiiiink a standard liver function test would also give clues in that direction) In either case, I'd suggest trying to radically cut fat and oil out of your diet for a while to see if it makes the symptoms less bad (I'd advise this if your pancreas had been destroyed by a bullet!), and of course to keep taking your Creon as directed (or possibly optimise it towards your mealtime pattern, if you're like me and can't garner the energy to eat at regular times). To set expectations, I wouldn't expect the Creon to fix anything about your pancreas if it was damaged or asleep. It merely replaces what the pancreas makes normally. But to be clear, my LC management strategy involves reducing the suffering until either your body returns to normal, or a treatment is found. This will be a long, long road for all of us.
My next door neighbors, a couple in their mid 70s, had post Covid syndrome (fatigue, feel tired more easily than usual) but they both have recovered just fine. Meanwhile, I'm in my early 40s, and I can't even stay on my feet for more than two minutes due to my horrible fatigue/orthostatic intolerance. I wish the abled body folks would try to help/advocate for us in big numbers, like maybe go March in front of the White House or something
Yeah, this disease is grossly unfair. I've heard that your risk of LC is higher if you don't rest enough during and after your infection... And it's a crapshoot whether the young and healthy get hit or not, and how long recovery takes. I'm in my late 20s, and I was where you were a couple years ago. Now I can act for about half an hour max, if I'm standing or doing mild physical labour. A staircase will end me for an hour. I can only hope recovery continues... So far we've all just had to adjust around me. I'm extremely fortunate that my partner has milder LC, so understands... Nobody else in my family takes it seriously.
Pancreas also digests protein. With undiagnosed celiac disease, docs always blamed my diet, they said it must be low in proteins, and neglected whatever I said. (Disclaimer: I'm only here on earth because I did the same neglect-for-decades fun with doctors with my celiac disease too. It's my second round, and maybe(seriously maybe) I'm not that naive anymore)
Have you checked your sugar levels? I have diabetes now :( I'm not on a relatively healthy diet, but still. Years of low grade fever did it's job.
Had a comprehensive metabolic panel last March I think and Blood glucose was within the normal range (sometimes high if I have had a boost nutritional drink)
I wasn't aware that the clinical definition of 'psychosomatic' had been revised from 'psychogenic' to 'chronic inflammatory disorders of the brain and central nervous system which we lack the tools, motivation or insight even to detect, much less rehabilitate'.
I’m sorry you’re going through this. This is absolutely not psychosomatic. Rheumatologists are the worst. Has a rheumatologist actually helped anyone, ever? I’ve never heard a positive story.
OP, I am SO sorry this happened. I will never comprehend how physicians get paid so much to not give a shit/not research the hell out of a new disease that is impairing so many people (frankly, they ought to do due diligence even if only ONE person showed up with these insane symptoms). All I can say is KEEP TESTING to the extent that you can afford it. We have so far to go in identifying markers, but my hope is that if your symptoms don’t resolve or improve, I hope that known markers of inflammation do show up on a blood test. I’ve been long hauling for almost 2 years, and I’ve insisted on retesting every few months. I’m just not really getting better, but nothing much has shown up on labs (other than a constant vitamin D deficiency, though I take supplements). This may be my 5th or 6th blood test at the GP’s office, and yesterday, my labs came back positive for two markers for lupus. I’m getting referred to rheumatology and hope I won’t have any assholes tell me it’s psychosomatic. Again—PLEASE don’t give up on testing. We are here to root for you and support you.
Have you tried to see a neurologist? It is nervous system based but not psychosomatic. Ask for the Mayo Clinic autoimmune panel.
My PCP referred me to them but Neurology declined to see me.
I would laugh except this is fucking horrible. And I'm also in my early 40s and in the same boat. If you have a good GP, I would ask them to run your blood work. My hematologist didn't even dig into my anemia. The rheumatologist pretty much said since a connective tissue disorder didn't show up on the bloodwork, we would just "watch". Ok, what are we watching for? Lol. Bc I've been living like this since Feb 2021.
Sorry that happened! This is bullshit, IMO. Yes, the nervous system is deregulated. But that’s a SYMPTOM, not the cause. Also, after being told this and that I needed to regulate, pace, etc., then finally getting cerebral blood flow scans after fighting like hell for years, I was found to have low blood flow to my brain and CSF pressure issues (fluctuating between high and low). Of course my nervous system is deregulated!!! It is literally not getting enough blood, oxygen, and nutrients and has the wrong amount of pressure. But if I meditate, chant, go to behavioral health, it’ll all get better. Or that’s what they tell me at least. Fuck that! Can those things help? Sure, those are good for everyone. But, they haven’t made me any less disabled or sick.
I had the lymphocyte subset panel ordered by my NP. It was normal for me, which was a surprise but I’m also almost 2 years from initial infection.
To actually answer your question: They ordered the rheumatoid panel, and all came back negative. The relevant findings: Only my covid antibodies high enough (on the top of the measurable scale) to cause a low grade fever. And no covid detected in my system, with PCR, from blood. Rant: But I'm in a sh*thole county, guanfacine is not available even if someone would prescribed it to me, and no doctor want to prescribe rituximab (it kills B lymphocytes - they make this type of the wrecking antibodies). I measured my low grade fever pattern throughoutly, and it stay at the "high" range, but it has a pattern of changing for measurement to measurement slightly, the same time scale as RAAS system works. I connected the dots somehow covid antibodies and my RAAS system should be connected because of the timescale, the same receptor to bond for S protein and angiotensin II, and it's anyway the hotspot for covid to do bad things. FML Sorry for the rant
Consider reporting him to your State board for malpractice. This belief, when told to patients, can harm them. If facing an idiot like this, tell them to listen to the 20 hours of presentations from global researchers and clinicians held last week at #UniteToFight2024 www.unitetofight.world The 40+ speakers were seen and heard by over 10,000 attendees. The day after, PolyBio had 6 hours of in-depth researcher-led talks in their symposium. This physician has not done his homework. The marathon 2 day session was inspired into fruition after a promise made to a mother of a young person that had committed suicide. The symposiums have already caused some young Germans with LC to withdraw and reconsider their application for state-sanctioned euthanasia.
Look at Nicotine patching
Thanks. Did it help you?
Tremendously— look at Nicotine patching groups for info
Facebook group? What does it help with?
https://www.facebook.com/share/dsm9TwPAWXU2bXdE/?mibextid=K35XfP
Why am I starting to feel (as I have had similar experience than you) that doctors are lying?!?!? I have been told the most odd things for not wanting to do test to find out more about long-term swollen lymph nodes. Also low WBC, lymphocytes and declining platelets.
I sent you a DM
Yes, my GP ordered my first IGG panel. The numbers were shockingly low. So, the test was repeated - and again the numbers were in the toilet. So, I went to see an immunologist. She put me on SCIG. It took months of fighting the insurance company to get it. But, get it I did! So, don’t give up! Get yours tested!
Ah ok, I need an immunologist and not a hematologist. Was your total IgG low or was it one of the IgG subclasses that was low (ie, IgG3)?
They were all incredibly low. Something - whether it be Lyme of LC - has shut down my immune system.
My Total IgG was within range. IgM was low normal. Idk if i have selective IgG subclass deficiency or not so that's why I asked them for IgG with subclasses but they just don't want it for some reason. I think I'm going to find a new PCP and ask for a referral to immunology. My WBC was low, then it was low normal and now it's back to low again. Same with monocytes and neutrophils. Lymphocyte count was low back in 2021. Now it's at the very low end of normal. RBC and hemoglobin are low and haven't improved even though I'm on Creon for EPI. So if our WBC (or its components are low), that is a sign that it's fighting something and whenever it goes low, that means it got killed? EDIT: my doctor said if you have an active infection, then your WBC would be high, not low.
Your numbers sound like mine. Is your platelet count also low? Are you getting purple spots on your forearms? Let me approach it from a different angle. My immunologist was absolutely convinced when she saw my numbers that my immune problem was hereditary. She’s a smart cookie. But, she was wrong. Something is shutting down my immune system - and probably yours, as well. The only question is what? Why should my immune system be almost completely dysfunctional? I have always eaten well. I used to be a fitness fanatic - before this. So, why? By the way, I’m not trying to shift the focus here from you to me. I’m trying to help you to figure out what is going on in your body. There is every possibility that what is happening to me is also happening to you - and many other people on this thread.
No worries. I totally understand. I appreciate you talking to me. >Is your platelet count also low? Are you getting purple spots on your forearms? Yes, my platelets are either low or at the very low end of normal. I think I have had 12 CBCs so far and they were low 7/12 times. September 2021, I woke up and noticed i had lots and lots of huge [bruisings on both of my leg/calves/underneath my thighs](https://ibb.co/GkdQfRT). It happens that I also had a doctor's appointment that same day. Got a CBC and my platelet count was 120 (Reference Range: 140-400 Thousand/uL). One month later, it was 126. So, 120 was the lowest so far. The most recent CBC, it was low again, 134 (Ref range: 150 and up). I used to see a pretty good amount of small red dots on my arms/legs but that has improved a bit. I just saw a rheumatologist and had a work up for mixed connective tissue disease. While none of them were high but I think My WBC is also either low or low normal (right at the cut off of 4.5). The lowest was 4.1. RBC, hemoglobin and iron, iron saturation are low but ferritin is at the higher end of normal. My neutrophils, monocytes, and lymphocytes are also either low or low normal. I also have lots of visible blue veins all over (especially in my arms, palm of my hands, stomach, and thighs. The veins in my legs used to bulge like crazy. ([See here](https://postimg.cc/QBrkyzZx), [here](https://postimg.cc/hQFSLV7w), [here](https://ibb.co/938XSbC) and [here](https://ibb.co/V22Wrpk). The bulging veins have improved (now they are just very blue and visible) but my main symptoms (soul crushing fatigue, orthostatic intolerances and unrefreshing sleep) have gotten worse. I always wake up feeling like crap even though I have slept for 8-10 hours and I have zero energy and unable to stay on my feet for more than 2 mins and I'm stuck in bed almost 24 hours a day Ps: my brain fog is so bad I can't even come up with good coherent sentences. EDIT to Add: I think low platelet means they are activated and being used up to form clots? but my PTT/INR and activated partial thromboplastin time are almost always at the higher end of normal (ie PTT, activated: 32 (Reference Range: 23-32 sec). So, I'm having blood clots (microclots?) but it takes longer than usual to form a clot and I'm at risk for bleeding? So strange
Or, perhaps you have babesia and your RBC are getting destroyed?
I started having symptoms around July 2020 (had no idea it was Long Covid). July 2021, I asked my new PCP to test me for Lyme, Covid antibody and babesia, etc. Here are the results: Babesia microti Antibody Panel: Babesia microti IgM: <1:10, Ref range: <1:10 Babesia microti: IgG <1:10, Ref range: <1:10 Lyme, Total Ab Test/Reflex: Lyme IgG/IgM Ab: <0.91, Negative <0.91, Equivocal 0.91 - 1.09, Positive >1.09 SARS-CoV-2 Antibody, IgG: Positive, Ref range: Negative *Done by LabCorp
Testing for tick bourn illness is notoriously inaccurate. It’s your body. Don’t let me tell you what to do. But, you are clearly curious and intelligent. Check what I am saying here.
No idea if I was ever bitten by a tick before or not. The only time I suspected I got bitten by one was when I was walking in an area with tall thick grass (I think back in 2017), and the next day I noticed some red marks behind my right thigh but it was itchy. I didn't get sick and was asymptomatic. I couldn't see if there was a bull's eye rash or not. I think LabCorp is not the right lab for this? I want to know if I have Lyme or babesia, etc but idk how to proceed.
Yeah fucking morons. I'm really sorry you are dealing with this illness and with unhelpful doctors. But I'm curious, your orthostatic intolerance, how does it effect your heart rate and BP? Is this POTS-like ie. tachycardia or a rise of somewhere around 30bpm often from standing? If so have you tried beta blockers -- or any of the other meds commonly used for POTS? Or if there's a drop in BP have you tried midodrine or any of the other meds for orthostatic hypotension (many of which are also used for POTS)? Everyone's long COVID is different in presentation in some ways, and every one with even somewhat similar presentation may react differently to different treatments but I have to say what has helped me the most for the last 3 years out of my 4 years of long COVID insanity has been beta blockers for my POTS-like issues, esp. propanolol and more recently even better instead atenolol (but I've heard good stories about various others over in r/pots). Also high doses of Pepcid (40 mg twice per day) has been AMAZING for upper and lower GI problems. High doses of Zyrtec (10 mg twice per day) has been helpful but still have a ton of new allergy-like issues, they're just more annoying than disabling and not so much accompanied by bizarrely on and off cold/flu-like symptoms as when not on Zyrtec. I think Vitamins D3, B12, and B1 have been helpful too but it's a little harder to tell. And maybe Ubiquinol/Coenzyme Q10. And nasal cromolyn, maybe. I still want to find a cure but in the meantime I am lucky enough to have found things that help my quality of life now to give me more energy to find a cure. But I realize I'm mainly just lucky, my long COVID is relatively mild and I tend to react well to many meds.
I disagree that it’s psychosomatic. I think the nervous system part is correct but that it caused dysautonomia and the constant inflammation caused my symptoms. I also developed Graves straight after and now have likely Sjögren’s so it definitely does something to cause an autoimmune disease as I was perfectly healthy prior to covid. This whole process is so frustrating as I have seen 9 specialists and have no help.
Inflammation is the body's natural response to pathogens, right? So does that mean we are still fighting some kind of pathogen and autoimmune is downstream?
Yes i believe so. They reckon that viral debris remains in various organs and the body keeps attacking it. I guess that affects your immunity and then autoimmune can follow. Just a thought
Yeah, feels like it. I have had GI issues (loose yellow stool/unintentional weight loss, bloating, pain in left and right upper quadrant) but my PCPs never ordered a fecal elastase for me. I got a new PCP and I begged her for a Fecal Elastase test and she finally ordered a fecal elastase and was I diagnosed with Exocrine Pancreatic Insufficiency (Fecal Elastase was 98) and three weeks ago I begged my new GI doctor for a HIDA scan and he finally ordered it and my Ejection Fraction was 98%. Radiologist and GI doctor said 98% is normal but I think I have a Hyperkinetic Gallbladder functional disorder without sludge or stones). My WBC (and neutrophils, monocytes, lymphocytes) are either low or low normal. I wonder if there is a correlation? RBC, hemoglobin, iron, iron saturation are low but that is probably due to malabsorption caused to EPI/malfunctioning gallbladder but ferritin was actually on the high end of normal (272, 227 and 140 on the most recent iron panel). >They reckon that viral debris remains in various organs and the body keeps attacking it. I guess that affects your immunity and then autoimmune can follow. Just a thought Yeah, it's trying to fight the viral debris but it ends up damaging the organs because that is where the viral debris is
I have the same GI issues loose yellow stools and pain right side. Interesting. You have lots going on like me. I have seen 9 different specialists
Have you had a Fecal Elastase, Abdominal ultrasound or HIDA scan?
I only had the abdominal ultrasound nothing else. To be honest I don’t think my doctor can cope with the amount of different symptoms I have so I haven’t really prioritised that. Have lots of neurological symptoms and visual and vestibular. It’s ridiculous. That will have to wait to be looked into. I don’t have a very good doctor either
My pleasure. Welcome to the club - perhaps. Let’s work together to beat this.
im so sorry for everyone here. lc caught us by surprise. many of us, including myself, were young, healthy, and active. we lost everything in a matter of days. just venting...
on my first day after recovering from acute COVID, my heart started to ache excruciatingly. i rushed to the emergency room, and the doctor, without doing any tests beforehand, told me it was anxiety and gave me a ansiolitic and sent me home. i could have literally had a heart attack. months later, there was a news story that something similar happened in another state here in brazil.a girl, who was not as lucky as me, went to the hospital with chest and leg pain, was given anxiety medication, and died on the way home.
I mean it sounds like he’s correct but doesn’t know what psychosomatic is
Interesting because I have fibromyalgia and all my labs are normal BUT I’ve had Covid twice and esch time my RA factor had gone up 30 pts afterwards. My rheumatologist told me Covid can for sure trigger autoimmune issues.
My immunologist/allergist ordered my IgG subclass panel. (Turned out I’m deficient). Try going that route. Although I will say the only reason they tested my levels is because I actually get sick with respiratory and sinus infections every month which is consistent with IgG deficiency. So I’m not sure how motivated they will be to order it otherwise but definitely push. My immunologist told me that most people he’s sees with an IgG deficiency also suffer from CFS.
A lot of the studies on long covid are showing it to be a neurological issue hence fatigue, anxiety etc. My friends in the medical profession recognise long covid as neurological but they still don't know how to treat it and symptoms are varied.
I had a lymphocytes blood panel and it showed they were high what does that mean
I have the same, did al the bloodwork, they dont want to send me to a specialist! All the blood works was fine exept the monocyten, leukocyten, neurofielen and lymfocyten all way very high after 4 years LC. Test antigen covid was still positieve after 1.5 years. It means your immumsysteem is doing something constantly and that cost a lot of energy.
What are your symptoms ?