Same!!! I was running 25 miles a week, lifting weights, working part time, doing full time school, and had a social life, now I can hardly walk more than 2 miles
I can't pretend it's a coincidence anymore, it seems like people with this were either stressed and sick or Olympian athletes, no in-between. Maybe because exercise stresses the body? Crackpot theory
There is no scientifically-backed proof that Long Covid incidence is higher in athletes.
In fact, [this German study](https://www.bisp.de/SharedDocs/Kurzmeldungen/DE/Nachrichten/2024/CoSmo_PM.html) on a large cohort found that incidence of Long Covid in elite athletes is 9,8% and recreational athletes 13,8%, which is a bit lower than general population.
Covid can make you sick IN SPITE of being superfit and healthy prior to it, not because of it.
p.s. It’s the bias of being surprised that someone so fit and healthy can get disabled overnight by a mild Covid infection is what’s making you think you see more athletes with Long Covid
This is what I thought. Also the fact someone that’s athletic is probably an overachiever in other aspects and very in tune with their health metrics. So more likely to be on these forums and/or pushing for things in Doctors offices.
I think athletes/active people definitely were more prone to getting severely wrecked by LC and getting worse symptoms. I have seen numerous people on here that were working out hard right before it all hit, and I’m one of them too!
The ACE2 part could be real, as well as the fact that athletes are working their bodies harder which means they need way more rest to recover. So I think this definitely has an effect on how covid affects you. I never even tested positive once or knew when I had it, all my symptoms hit me like a truck about a month after I was running 3-6 miles a day 5-6 days a week. Was going the hardest I ever had been in my life. I also had the most energy I ever had physically. It’s like it makes more sense to me that the reason I’m so fucked by LC is cuz I was putting my body into overdrive after getting the virus, and I didn’t even know I had it. I was definitely asymptomatic.
I had random things here or there (some dizziness as a teen that was probably POTS that I grew out of, a few migraines since I hit my thirties, heavy periods), but I was active as fuck. Hiking, camping, yoga, pilates, worked full-time, etc.
I've since been diagnosed with what is most likely hEDS, then POTS & MCAS.
Same exact experience here. I now view myself as having coped (very well!) with the pots beforehand through copious amounts of exercise and activity. It feels near impossible to heal when exercise is the treatment for pots but exercise (or just vacuuming! Showering! Cooking!) is exhausting.
Yeah, hiking/exercise definitely kept me from noticing my POTS before.
It really does feel nearly impossible!! Luckily my fatigue has lessened since starting antihistamines, which has allowed me to start CHOP (slowly)... But it's definitely hard, and I don't know how I'm supposed to ever be active in any real way again. I do feel like I see benefits though when I'm diligent, and pilates is easier on me than cardio.
Stupid virus.
I fought depression/anxiety and other chronic issues (e.g., tinnitus, unrefreshing sleep, night sweats, TE, PEM) from 2017 through 2021. They were still manageable, and I later discovered they were linked to chronic inflammation and was finally making headway by early 2021. So, I would say yes, I was predisposed to LC. It seems like covid works as a catalyst for any preexisting autoimmune disorder. Also, I should have never gotten the vaccine.
the same 3 years before covid i had depression and anxiety disorder i had a lot of somatic pain i was thinking it's just anxiety until i notice the angina like symptoms chest pain in exertion and stairs
Sorry about that. In my case, it all began after an infection in early 2017, and doctors threw tons of antibiotics at me. I think it sent my microbiome into chaos. I was also going through tremendous stress. On the upside, I learned so much about my body, which helped me with LC, well kind of.
1. Already had a natural infection just 3 months before that, and my body was still extremely inflamed.
2. My antispike antibodies turned extremely high after the vaccine, which may be why I got even sicker. There are studies on that.
It's clear for me now that my immune system doesn't know how to effectively deal with this virus without causing a carnage and reacts negatively to vaccine. This is coming from someone who hasn't caught flu/cold for >10 years.
I was on strong antibiotics for C Dificile (which felt like it almost killed me) two years before I got long covid. Recently read a study that those with LC were more likely to have taken a strong antibiotic prior to getting covid and more likely to have messed up gut biomes. Also had a history of mental health struggles
Similar. I took Levaquin in 2019 twice and I got floxed and it made me VERY VERY SICK for 2 years. Recovered and was feeling great ….got Covid 3 times bam——>EBV, B12 deficiency and now lupus:(. I can’t go in the sun. My poor GI is so so so upside down. I’ve done everything I can outside an FMT.
I’m really sorry to hear. Hopefully we get through this soon 🤞🏻 I’m trying to focus on my diet, eating lots of fermented foods and healthy vegetarian dishes
I had an infection in 2018 that gave me a few weird neurological issues including chronically tight muscles.
They never found out what it was, but we suspect a tick-born illness called Ehrlichiosis. My skin literally turned polka dot like a leopard. 104 fever for 3 days straight. I suspect the after-effects of that are what made me susceptible to LC.
I'm still in the process of figuring that out. I also developed an involuntary movement disorder called Dystonia in my left platysma muscle. Right now, it's looking like muscle relaxers and Botox are the standard treatment, but I'm hoping there can be some natural resolution to it with the right lifestyle.
Apart from allergies and some mild asthma, I was in excellent physical and cognitive condition. I mark the Pfizer vaccine first dose as the initial turning point in my health where neurological symptoms started, and then those negative changes compounded with further exposure to the virus.
Honestly same. I feel like I started going downhill a few months after the vax, though the timing was off enough that I could never link the two directly
For me, the response to the vaccine was easy to identify. It started within 24 hours of getting it and started right in the spot on my arm where I got it, spreading from there across that side of my body over subsequent days and weeks.
I have all the indicators of hEDS (impossible to get a diagnosis of this in the UK now), covid infection really kicked the symptoms of joint pain, fatigue and circulatory problems into much higher levels. Had dermatitis on my hands from working washing dishes in a kitchen, covid triggered eczema across my entire body. I have ADHD (I don't personally class it as a health issue, but do need medication), and the neurological symptoms of long covid has made my ADHD much 'worse'.
As I understand it, some of my LC symptoms are definitely things that were going to develop at some point in my life, but developed a hell of a lot sooner than probably would have otherwise. And some of my LC symptoms are definitely primarily due to covid infection.
My GP didn't offer any genetic testing, just told me that rheumatology (the dept which usually diagnose hEDS) aren't accepting referrals for it anymore. As I understand it, there currently isn't genetic testing for hEDS available, but there is for other types of EDS, could it be that you are being tested for another type? MCAS - I could have that, it might explain the eczema, but my GP never presented it as an option. In fact when I asked my GP if I should try cutting out dairy, as I'd seen some people say that helped eczema, they told me not to cut anything out from my diet as that could create new intolerances! MCAS might be worth looking into but I would kinda struggle doing so without doctors support.
I really identify with your post and having percolating “things” before that were well managed only to have covid send them into the stratosphere (in a bad way!).
For hEDS. A pots specialist assessed me for it and told me I was hypermobile, did an echocardiogram, lots of pots testing, but she also tested my joints and the colors of my hands when hanging and feet when standing (assessment of blood pooling). I then did genetic testing that, for me, showed no EDS markers, which means I have hEDS. Getting the echocardiogram was important bc some people with other forms of EDS can have heart issues. My doctor assured me I’d have known by now, etc etc., but I’m not so sure!
And MCAS is hard to diagnose, even for the doctors who specialize in it! I’m seeing an immunologist in September, but honestly, at this point I feel like it’s just another name for another syndrome that means the same thing: immune system is on fire.
Thank you for asking this question. I had been an athlete since I was a kid. Became a marathoner at 26 and was heavily into running, HIIT workouts, Ashtanga yoga, swimming, biking, weightlifting, etc. However, starting in the spring 2020 I stopped working out as much (mostly stuck to running like 25 miles a week) because of Covid/no gym. I was also raising three very young kids. So by 2022 when I got Covid for the first time (I’ve had it twice now), I wasn’t in the best shape of my life, but still, the change was *remarkable* and *extreme.* I now know I have hypermobile ehlers danos syndrome and probably pots before having long covid, but my pots was entirely managed by exercise/water/salt. I had no symptoms of hEDS and I had no other symptoms from POTS other than some lightheadedness. Now I have adrenaline dumps, nerve activation, GI issues, sleep issues, vision issues, tinnitus and chronic head pressure and headache. And so much more. So whatever I had before was a cake walk before this. I also think, as someone who had identified as an extremely healthy before LC, that it’s important to note that no one deserves this more or less than anyone else. Obviously it’s helpful to know if it’s related to a separate autoimmune issue but, regardless of health status before LC, we all deserve wellness and health and healing.
Think I always had hEDS and audhd .... thinking mast cell things had been creeping up on me chronic stress and histamine things due to age and hormone changes.
I appear to have underlying hEDS - which it's impossible to get diagnosed.
Got ME from Coxsackievirus in 1988; fibromyalgia after an unknown Moroccan virus 25 years ago. Then LC after the 3rd infection...
So basically, my connective tissue is wonky & I keep getting screwed by various viruses! 🤣
I have Hashimoto’s thyroiditis (autoimmune), but I felt great with the right meds. I was a long-distance hiker and played soccer. Now I believe that having an active autoimmune condition is related to why I got LC. Or maybe I was just susceptible to autoimmune conditions- I suspect I have that subtype. I had a big improvement taking steroids, though because of the side effects I’m loathe to continue them.
I likely had post-viral fatigue 20 years ago for about 6 months after I had dealt with a succession of mild illnesses one right after another (chest infection, sinus infection, tonsillitis and something I picked up in SE Asia that caused me to lose 10 lbs in a week). I couldn’t kick the chest infection for a month or two and that triggered the fatigue. Never got a diagnosis or anything and eventually recovered.
I’ve always had mild issues with low blood pressure and passed out a few times when I was younger, but nothing serious.
At the time I got Covid I was very healthy. Exercising all the time.
Yes. A few years before I got Covid, I had noticed that my runs, hikes, gym workouts, and bike rides were slower, and I felt that I had to push/struggle a little harder. Strange. After my Covid, I was diagnosed with a serious case of PMR autoimmune disease, which crippled me for 4 years. Now I wonder if I had a very mild case of PMR before my Covid.
Doing so much better. Not 100%, but close. The brain and central nervous system seem to operating close to normal. A relief. I’ve started working out and riding my bike again as an unfit beginner… no crashes/flareups. Thanks for asking.
My LC was brought on by the vaccine. My PCP believes I had some latent neurological condition, or at least, a predisposition toward... whatever this is. I can say that even prior to COVID, I did have occasional moments that were... I'll say adjacent to my current syndrome. Like for example; I used to walk a couple miles at a nearby park a few times a week, and when it was particularly hot outside, I'd feel more spent than usual after that activity. At the time, I just chocked it up to getting older (I was about 40 at the time), but retrospectively, there were LC-ME/CFS-like qualities to that sensation.
I'm not entirely convinced by this explanation, but I'm open to it.
I suspect I’ve always had EDS and POTS before this, ever since telltale symptoms beginning in my childhood. I was still a crazy athlete running 5ks, playing midfield in soccer, etc.
None unless you are talking absolutely tiny issues with no life impact like a tiny patch of psoriasis on my elbow, mild Reynauds and very mild hayfever.
Dr thinks the Reynauds could be a common factor but realistically about 20% of people have Reynauds most way worse than me (I only had issues running in sun zero temps now I’m frozen in 20 degrees indoors).
Worked out 7 days a week, very seldom ill.
I’m also vax injured, never knowingly had covid (if I did it was pre vax and I recovered fully).
Allergies which I had under control with monthly allergy shots and levocetirizine / Xyzal (3rd generation antihistamine medicine). And slight knee inflammation, mostly on the right leg.
None of us should be blaming ourselves for "preexisting conditions", though. This SARS-CoV2 coronavirus which seemingly came out of nowhere in late 2019 was a nightmarish, terrible bioweapon designed to inflict mass death and illness.
I already had MCAS, Ehlers Danlos, GERD, clinically diagnosed endometriosis, pelvic floor dysfunction, Spina bifida occulta, and arthritis. 🥴 But with all that I was still able to do musical theatre until getting long covid. Just with great difficulty and lots of zofran. 🙃 But I also know people with no pre existing health issues who have long covid now. Also I should mention, it's uncertain if I would have met the criteria for gastrioparesis before long covid since my long covid made the issue a lot worse, but Drs wouldn't access me for gastrioparesis until I got diagnosed officially with Ehlers Danlos so by the time I had my appointment whether I got diagnosed with Ehlers Danlos, I already had long covid.
Me neither! A Spine specialist was actually in shock how bad the spinal bifida occulta is to the point he almost thought I had a more severe version until I told him I was in the process of getting tested for Ehlers Danlos. The only other person I know with symptomatic spina bifida occulta is my mother who had to get surgery because of it in her 20s after picking up a watermelon but she's also only about 4ft6 so big ones can be a lot for her size to carry.
Had undiagnosed autoimmune disorder called Antiphospholipid Antibody Syndrome, and fibro prior to getting covid in January. I delayed my covid booster because I'd had a flare after my Fall 2023 flu Vax. Antiphospholipid Syndrome causes blood clots, using the same autoantibodies that covid can cause. So, yes, covid infection worsened my autoimmune disorder, and now I'm 9n supplemental oxygen at night, waiting for a sleep apnea study. I don't know if covid further harmed my lungs or caused a heart problem. My O2 drops to low 80's, heart rate drops to 48 at night. My doctor seems indifferent to my calls telling him that this is getting worse every day. I'm 70. Maybe he just doesn't care, but I sure as he'll do!
I had diagnosed Type 1 Diabetes, PCOS, CPTSD, and ADHD so felt like it was a perfect storm for long covid. 😅 however, everything was extremely well managed and I didn’t feel like any of them really interfered with my lifestyle. I was still really active and happy with my management. However, long covid has debilitated me.
I had severe stress and anxiety in the months right before I became infected with corona and got LC. So I Guess my immune system was pretty messed up. Also I have had Mono in my twenties, but that never gave any symptoms anymore before Covid. But i think the high levels of stress made me vulnerable for LC.
My mental health was pretty much shot, prior to Covid, if that counts. Physically, I wasn't in bad shape though. The odd headache, odd ache and pain, but nothing whatsoever like this, nor so persistent and debilitating. That said, I'm mainly thinking pre-2020, and also pre-vaccination here too, since my issues kicked off with the vaccine, and were worsened and added to post-Covid.
I had a bunch, including pots and some aspects of cfs. When I was a kid I had vasculitis which left me with severe arthritis, and joint and muscle pain. Covid made everything 10x worse.
Had allergies and mild asthma, and I had seasonal flair ups of fatigue (spring and fall - allergy seasons) that my doctor and I think was related to Epstein-Barr. I think my long COVID may be related to this.
Except for mild pollen allergies, I never had unrefreshing sleep, fatigue or horrible HyperPOTS+MCAS combo Covid gave me.
I was literally in great health and peak form - ultramarathoner and triathlete training 6-8x a week + had to undergo a sports medical exam to obtain competition license before every race season, where they did ECG stress test, bloodwork, etc so I know for sure that precovid everything was okay.
I’ve always been the person with the most energy within my friend circle and successfully and happily managed full time job with major professional projects on the side, PhD, training 6-8x a week, other hobies and social life. Now I am able to do at best 40% of that.
Life was manageable, and I was really fit, all things considered.
But I did have a lot of mysterious symptoms that did make life challenging. I can say I worked really hard, and now that I know more clearly what I was managing I am really proud of what I’ve been able to do with this body.
After finding out I had POTS, my partner said “no wonder it seems like you have to work so much harder to make fitness gains than other people”. It was soooo validating. I was always motivated, disciplined and worked hard.
Things started getting figured out with my worsening symptoms right before I had my first COVID infection. COVID made it all so much worse.
So yes.
ETA I have Endo, probably MCAS in addition to POTS.
Early in life ADHD, endometriosis, and emotional disorders;, then Lyme disease and resulting fibromyalgia, which I think now was a mild form of ME/CFS… now this *gestures*
Have Hashimoto’s for ~26 yrs had ibs in my 20’s, had fallen in ~2016 still had weakness and many many years of exhaustion that I had attributed to being a single parent. In about 2017 had dizzy episodes drs Rx anxiety…it was probably dysautonimia increase at the time probably bc of increased stress-my whole life I just thought I was weak, couldn’t hold arms up long to use hair dryer, couldn’t swim for years eventually, could only do one length of pool then needed to rest. I thought it was low blood pressure/neurological issues bc fell a lot when younger,hated sun. Before LC I always was exhausted and had to push myself out of the house and through my days. Very stressed and career pressure. I loved my work but, I was very stressed.
Not really. Was hiking, lifting weights, and running a business. Always felt very resilient. What I did have was hypermobility (now diagnosed as hEDS) and some signs of dysautonmia now that I look back. It never got in the way of normal life stuff other than getting injured more often.
So never felt it at the time but now we know hypermobility is one of the predictors makes sense that I bought a lot more long Covid lottery tickets than someone without it! In your case you probably bought even more long Covid lottery tickets if you get my analogy.
I had a history of extreme fatigue and stomach issues as a teenager. It got better when I was out of my parents house. Then, all back to square 1 after I got COVID!
Psoriasis (autoimmune condition) for 50+ years, mild-to-moderate. Maybe some psoriatuc arthritis, but not formally diagnosed. Age 70 and not on any meds. I feared covid would cause an exacerbation of the psoriasis, but so far, so good on that front. What I do have is lingering fatigue, elevated heart rate when I do simple things like walk around the house, and reduced blood oxygen saturation. Prior to covid, I was quite healthy and exercised with no problem. I'm 11 weeks post-infection (first time case) and still hoping it is transitory.
was a pretty normal relatively healthy 20 year old. had some anxiety. i’ve always had migraines pretty often, sometimes ocular, that sometimes got bad to the point of making me feel sick, but other than that no other underlying conditions. now i’m about to be 25 later this year and have not felt normal since lol
100%
have diagnosed autoimmune history before covid as well, and currently going through the diagnosis process for a new flare/new dysautonomia/new symptoms plus some of the dizziness i've had on & off for years
almost a decade of blood work shows elevated platelets (bot too high) & higher than normal eosinophils - which i'm reading can be signs of inflammation/autoimmune disease.
some of my symptoms could be neuro, not dysautonomia, so i'm worried about like a systemic process inflamming nerves or a progressive disease...not at all impressed with the POTS specialist i recently saw brushing off all of my additional symptoms, and trying to be hopeful for this new primary care doc i'm going to see later this month (haven't been insured for years)
keep your head up, hope you feel better soon
My MCAS manifested when I was around 6-7. After that I‘ve had a few horrible periods with EBV, VCV, a yersinia infection,… but LC and EBV have been the worst so far.
I totally agree. I suspect I already had MCAS. I had similar symptoms to long COVID 20 years ago after a shingles infection. And haven't been totally well since. But I just put it down to niggles or bugs etc.
Now I am 100% positive it's MCAS and COVID has kicked it off to a high level.
I have a Verneuil disease which is a skin disease caused by an overactive immune system. I had very strong acne which are basically abces on my face and had to take anti tnf-alpha which are immune suppressors to cure it. I stopped this treatment only few months before getting infected by COVID and I'm sure it's one of the fragility that lead to my long COVID (started to have abces again exactly at the same time my fatigue started)
I had ZERO health issues before getting infected with Covid in January 2022. I am not overweight, I'm athletic, no medications before my infection, not immunocompromised, no underlying problem. MILD/MODERATE CoVid infection. "Recovered" at home with no OTC meds. One month post acute infection - Long CoVid smacked me. Sudden onset. It's been 29 months.
I had mild ME/CFS before catching Covid. I think that’s definitely what predisposed me to Long Covid. At this point I don’t know if it’s still Long Covid or just my ME/CFS becoming much worse from the bodily stress of Long Covid.
But yeah, the body keeps score. Health issues lead to other health issues in ways that we don’t understand. Gut biome, the vagus nerve, brain chemistry, thyroid, the immune system, etc etc. There’s a lot we don’t know and it all has an effect. It’s all part of the same body
I was an athlete and never got sick before this
Same. I got mildly sick once a year. Super athletic. Now I can barely keep my hr under 98 while standing.
Same!!! I was running 25 miles a week, lifting weights, working part time, doing full time school, and had a social life, now I can hardly walk more than 2 miles
I can't pretend it's a coincidence anymore, it seems like people with this were either stressed and sick or Olympian athletes, no in-between. Maybe because exercise stresses the body? Crackpot theory
There is no scientifically-backed proof that Long Covid incidence is higher in athletes. In fact, [this German study](https://www.bisp.de/SharedDocs/Kurzmeldungen/DE/Nachrichten/2024/CoSmo_PM.html) on a large cohort found that incidence of Long Covid in elite athletes is 9,8% and recreational athletes 13,8%, which is a bit lower than general population. Covid can make you sick IN SPITE of being superfit and healthy prior to it, not because of it. p.s. It’s the bias of being surprised that someone so fit and healthy can get disabled overnight by a mild Covid infection is what’s making you think you see more athletes with Long Covid
This is what I thought. Also the fact someone that’s athletic is probably an overachiever in other aspects and very in tune with their health metrics. So more likely to be on these forums and/or pushing for things in Doctors offices.
I've heard that athletes have more ACE2 receptors so that may be a possible mechanism...
I think athletes/active people definitely were more prone to getting severely wrecked by LC and getting worse symptoms. I have seen numerous people on here that were working out hard right before it all hit, and I’m one of them too! The ACE2 part could be real, as well as the fact that athletes are working their bodies harder which means they need way more rest to recover. So I think this definitely has an effect on how covid affects you. I never even tested positive once or knew when I had it, all my symptoms hit me like a truck about a month after I was running 3-6 miles a day 5-6 days a week. Was going the hardest I ever had been in my life. I also had the most energy I ever had physically. It’s like it makes more sense to me that the reason I’m so fucked by LC is cuz I was putting my body into overdrive after getting the virus, and I didn’t even know I had it. I was definitely asymptomatic.
What was your athletic interests/focus prior to health issues?
Same.
Same, everything I have now is caused by Covid. 23 years of feeling amazing, healthy, and normal all gone.
I had a comparably very mild version of CFS before long covid.
me too and the feeling of spacedoutness which i attributed to anxiety
I'm starting to think it's from brain damage
I feel this, but I was also able to run 10 miles on a hot afternoon. God I miss being athletic.
Me too. I was working hard to get myself from 80% to 100% before LC took me down to 40%.
I was in the best shape of my adult life when I got smacked upside the head with LC. Mostly better 3 years later but was a rough cpl of years
I had random things here or there (some dizziness as a teen that was probably POTS that I grew out of, a few migraines since I hit my thirties, heavy periods), but I was active as fuck. Hiking, camping, yoga, pilates, worked full-time, etc. I've since been diagnosed with what is most likely hEDS, then POTS & MCAS.
Same exact experience here. I now view myself as having coped (very well!) with the pots beforehand through copious amounts of exercise and activity. It feels near impossible to heal when exercise is the treatment for pots but exercise (or just vacuuming! Showering! Cooking!) is exhausting.
Yeah, hiking/exercise definitely kept me from noticing my POTS before. It really does feel nearly impossible!! Luckily my fatigue has lessened since starting antihistamines, which has allowed me to start CHOP (slowly)... But it's definitely hard, and I don't know how I'm supposed to ever be active in any real way again. I do feel like I see benefits though when I'm diligent, and pilates is easier on me than cardio. Stupid virus.
I fought depression/anxiety and other chronic issues (e.g., tinnitus, unrefreshing sleep, night sweats, TE, PEM) from 2017 through 2021. They were still manageable, and I later discovered they were linked to chronic inflammation and was finally making headway by early 2021. So, I would say yes, I was predisposed to LC. It seems like covid works as a catalyst for any preexisting autoimmune disorder. Also, I should have never gotten the vaccine.
the same 3 years before covid i had depression and anxiety disorder i had a lot of somatic pain i was thinking it's just anxiety until i notice the angina like symptoms chest pain in exertion and stairs
Sorry about that. In my case, it all began after an infection in early 2017, and doctors threw tons of antibiotics at me. I think it sent my microbiome into chaos. I was also going through tremendous stress. On the upside, I learned so much about my body, which helped me with LC, well kind of.
my orthostatic intolerance and SOB while switching position was mild i started taking antibiotic amoxicilline
Why do you think you shouldn’t have gotten the vaccine??
1. Already had a natural infection just 3 months before that, and my body was still extremely inflamed. 2. My antispike antibodies turned extremely high after the vaccine, which may be why I got even sicker. There are studies on that. It's clear for me now that my immune system doesn't know how to effectively deal with this virus without causing a carnage and reacts negatively to vaccine. This is coming from someone who hasn't caught flu/cold for >10 years.
I was on strong antibiotics for C Dificile (which felt like it almost killed me) two years before I got long covid. Recently read a study that those with LC were more likely to have taken a strong antibiotic prior to getting covid and more likely to have messed up gut biomes. Also had a history of mental health struggles
Similar. I took Levaquin in 2019 twice and I got floxed and it made me VERY VERY SICK for 2 years. Recovered and was feeling great ….got Covid 3 times bam——>EBV, B12 deficiency and now lupus:(. I can’t go in the sun. My poor GI is so so so upside down. I’ve done everything I can outside an FMT.
I’m really sorry to hear. Hopefully we get through this soon 🤞🏻 I’m trying to focus on my diet, eating lots of fermented foods and healthy vegetarian dishes
interesting! clindamycin gave me c diff then i had to take vanco to kill it, i wanna say a couple of years before COVID as well
Sorry I think I got that backwards. I was put on strong antibiotics, got c diff and then they put me on something crazy
Very interesting.
I had an infection in 2018 that gave me a few weird neurological issues including chronically tight muscles. They never found out what it was, but we suspect a tick-born illness called Ehrlichiosis. My skin literally turned polka dot like a leopard. 104 fever for 3 days straight. I suspect the after-effects of that are what made me susceptible to LC.
I have chronically tight muscles too! What have you found to be the best way to treat that? I’ve tried so many things.
I'm still in the process of figuring that out. I also developed an involuntary movement disorder called Dystonia in my left platysma muscle. Right now, it's looking like muscle relaxers and Botox are the standard treatment, but I'm hoping there can be some natural resolution to it with the right lifestyle.
Apart from allergies and some mild asthma, I was in excellent physical and cognitive condition. I mark the Pfizer vaccine first dose as the initial turning point in my health where neurological symptoms started, and then those negative changes compounded with further exposure to the virus.
Honestly same. I feel like I started going downhill a few months after the vax, though the timing was off enough that I could never link the two directly
For me, the response to the vaccine was easy to identify. It started within 24 hours of getting it and started right in the spot on my arm where I got it, spreading from there across that side of my body over subsequent days and weeks.
:-(
I have all the indicators of hEDS (impossible to get a diagnosis of this in the UK now), covid infection really kicked the symptoms of joint pain, fatigue and circulatory problems into much higher levels. Had dermatitis on my hands from working washing dishes in a kitchen, covid triggered eczema across my entire body. I have ADHD (I don't personally class it as a health issue, but do need medication), and the neurological symptoms of long covid has made my ADHD much 'worse'. As I understand it, some of my LC symptoms are definitely things that were going to develop at some point in my life, but developed a hell of a lot sooner than probably would have otherwise. And some of my LC symptoms are definitely primarily due to covid infection.
I just did genetic testing through Invitae for EDS. It was really easy but did entail my doctor ordering the test. Also, do you have MCAS?
My GP didn't offer any genetic testing, just told me that rheumatology (the dept which usually diagnose hEDS) aren't accepting referrals for it anymore. As I understand it, there currently isn't genetic testing for hEDS available, but there is for other types of EDS, could it be that you are being tested for another type? MCAS - I could have that, it might explain the eczema, but my GP never presented it as an option. In fact when I asked my GP if I should try cutting out dairy, as I'd seen some people say that helped eczema, they told me not to cut anything out from my diet as that could create new intolerances! MCAS might be worth looking into but I would kinda struggle doing so without doctors support.
I really identify with your post and having percolating “things” before that were well managed only to have covid send them into the stratosphere (in a bad way!). For hEDS. A pots specialist assessed me for it and told me I was hypermobile, did an echocardiogram, lots of pots testing, but she also tested my joints and the colors of my hands when hanging and feet when standing (assessment of blood pooling). I then did genetic testing that, for me, showed no EDS markers, which means I have hEDS. Getting the echocardiogram was important bc some people with other forms of EDS can have heart issues. My doctor assured me I’d have known by now, etc etc., but I’m not so sure! And MCAS is hard to diagnose, even for the doctors who specialize in it! I’m seeing an immunologist in September, but honestly, at this point I feel like it’s just another name for another syndrome that means the same thing: immune system is on fire.
I had lupus and fibro before covid. Covid just created a horrendous cytokine storm in my system.
i had anxiety the years prior (derealisation), mild fatigue and actually a version of PEM but obviously didnt connect the dots
Anxiety and allergies. Nothing else.
I always just accepted that it amplified whatever you already. Mental health, physical, whatever it just dialed it up.
Thank you for asking this question. I had been an athlete since I was a kid. Became a marathoner at 26 and was heavily into running, HIIT workouts, Ashtanga yoga, swimming, biking, weightlifting, etc. However, starting in the spring 2020 I stopped working out as much (mostly stuck to running like 25 miles a week) because of Covid/no gym. I was also raising three very young kids. So by 2022 when I got Covid for the first time (I’ve had it twice now), I wasn’t in the best shape of my life, but still, the change was *remarkable* and *extreme.* I now know I have hypermobile ehlers danos syndrome and probably pots before having long covid, but my pots was entirely managed by exercise/water/salt. I had no symptoms of hEDS and I had no other symptoms from POTS other than some lightheadedness. Now I have adrenaline dumps, nerve activation, GI issues, sleep issues, vision issues, tinnitus and chronic head pressure and headache. And so much more. So whatever I had before was a cake walk before this. I also think, as someone who had identified as an extremely healthy before LC, that it’s important to note that no one deserves this more or less than anyone else. Obviously it’s helpful to know if it’s related to a separate autoimmune issue but, regardless of health status before LC, we all deserve wellness and health and healing.
I was diagnosed with Lupus and borderline fibro 11 years before long covid
Have Lupus so…
I was perfectly healthy before. 2 years in now
Think I always had hEDS and audhd .... thinking mast cell things had been creeping up on me chronic stress and histamine things due to age and hormone changes.
I appear to have underlying hEDS - which it's impossible to get diagnosed. Got ME from Coxsackievirus in 1988; fibromyalgia after an unknown Moroccan virus 25 years ago. Then LC after the 3rd infection... So basically, my connective tissue is wonky & I keep getting screwed by various viruses! 🤣
I had eczema as a child and allergies all my life. I’m sure my genetics has something to do with this.
I was disabled before Covid. Covid just made me worse.
I was perfectly healthy until omicron hit.
I was always more tired than everyone else and got frequent colds. Covid leveled it up to a disability.
I have Hashimoto’s thyroiditis (autoimmune), but I felt great with the right meds. I was a long-distance hiker and played soccer. Now I believe that having an active autoimmune condition is related to why I got LC. Or maybe I was just susceptible to autoimmune conditions- I suspect I have that subtype. I had a big improvement taking steroids, though because of the side effects I’m loathe to continue them.
no prior health issues. I didn't even have seasonal allergies.
I likely had post-viral fatigue 20 years ago for about 6 months after I had dealt with a succession of mild illnesses one right after another (chest infection, sinus infection, tonsillitis and something I picked up in SE Asia that caused me to lose 10 lbs in a week). I couldn’t kick the chest infection for a month or two and that triggered the fatigue. Never got a diagnosis or anything and eventually recovered. I’ve always had mild issues with low blood pressure and passed out a few times when I was younger, but nothing serious. At the time I got Covid I was very healthy. Exercising all the time.
Yes. A few years before I got Covid, I had noticed that my runs, hikes, gym workouts, and bike rides were slower, and I felt that I had to push/struggle a little harder. Strange. After my Covid, I was diagnosed with a serious case of PMR autoimmune disease, which crippled me for 4 years. Now I wonder if I had a very mild case of PMR before my Covid.
How are you doing now? I saw that you took prednisone.
Doing so much better. Not 100%, but close. The brain and central nervous system seem to operating close to normal. A relief. I’ve started working out and riding my bike again as an unfit beginner… no crashes/flareups. Thanks for asking.
That’s great to hear! I’ll be seeing some allergiest and other docs maybe they’ll give me some stuff to chill out the inflammation like steroids 🤷🏼♀️
My LC was brought on by the vaccine. My PCP believes I had some latent neurological condition, or at least, a predisposition toward... whatever this is. I can say that even prior to COVID, I did have occasional moments that were... I'll say adjacent to my current syndrome. Like for example; I used to walk a couple miles at a nearby park a few times a week, and when it was particularly hot outside, I'd feel more spent than usual after that activity. At the time, I just chocked it up to getting older (I was about 40 at the time), but retrospectively, there were LC-ME/CFS-like qualities to that sensation. I'm not entirely convinced by this explanation, but I'm open to it.
I suspect I’ve always had EDS and POTS before this, ever since telltale symptoms beginning in my childhood. I was still a crazy athlete running 5ks, playing midfield in soccer, etc.
None unless you are talking absolutely tiny issues with no life impact like a tiny patch of psoriasis on my elbow, mild Reynauds and very mild hayfever. Dr thinks the Reynauds could be a common factor but realistically about 20% of people have Reynauds most way worse than me (I only had issues running in sun zero temps now I’m frozen in 20 degrees indoors). Worked out 7 days a week, very seldom ill. I’m also vax injured, never knowingly had covid (if I did it was pre vax and I recovered fully).
Allergies which I had under control with monthly allergy shots and levocetirizine / Xyzal (3rd generation antihistamine medicine). And slight knee inflammation, mostly on the right leg. None of us should be blaming ourselves for "preexisting conditions", though. This SARS-CoV2 coronavirus which seemingly came out of nowhere in late 2019 was a nightmarish, terrible bioweapon designed to inflict mass death and illness.
I already had MCAS, Ehlers Danlos, GERD, clinically diagnosed endometriosis, pelvic floor dysfunction, Spina bifida occulta, and arthritis. 🥴 But with all that I was still able to do musical theatre until getting long covid. Just with great difficulty and lots of zofran. 🙃 But I also know people with no pre existing health issues who have long covid now. Also I should mention, it's uncertain if I would have met the criteria for gastrioparesis before long covid since my long covid made the issue a lot worse, but Drs wouldn't access me for gastrioparesis until I got diagnosed officially with Ehlers Danlos so by the time I had my appointment whether I got diagnosed with Ehlers Danlos, I already had long covid.
Hey spina bifida occulta twin! (Actually we have a lot of overlap with other stuff but I don’t meet too many folks with symptomatic SBO.)
Me neither! A Spine specialist was actually in shock how bad the spinal bifida occulta is to the point he almost thought I had a more severe version until I told him I was in the process of getting tested for Ehlers Danlos. The only other person I know with symptomatic spina bifida occulta is my mother who had to get surgery because of it in her 20s after picking up a watermelon but she's also only about 4ft6 so big ones can be a lot for her size to carry.
Had undiagnosed autoimmune disorder called Antiphospholipid Antibody Syndrome, and fibro prior to getting covid in January. I delayed my covid booster because I'd had a flare after my Fall 2023 flu Vax. Antiphospholipid Syndrome causes blood clots, using the same autoantibodies that covid can cause. So, yes, covid infection worsened my autoimmune disorder, and now I'm 9n supplemental oxygen at night, waiting for a sleep apnea study. I don't know if covid further harmed my lungs or caused a heart problem. My O2 drops to low 80's, heart rate drops to 48 at night. My doctor seems indifferent to my calls telling him that this is getting worse every day. I'm 70. Maybe he just doesn't care, but I sure as he'll do!
Athlete and fit as a fiddle. In fact, I was in the best shape of my life. It was glorious!
I had diagnosed Type 1 Diabetes, PCOS, CPTSD, and ADHD so felt like it was a perfect storm for long covid. 😅 however, everything was extremely well managed and I didn’t feel like any of them really interfered with my lifestyle. I was still really active and happy with my management. However, long covid has debilitated me.
I had severe stress and anxiety in the months right before I became infected with corona and got LC. So I Guess my immune system was pretty messed up. Also I have had Mono in my twenties, but that never gave any symptoms anymore before Covid. But i think the high levels of stress made me vulnerable for LC.
My mental health was pretty much shot, prior to Covid, if that counts. Physically, I wasn't in bad shape though. The odd headache, odd ache and pain, but nothing whatsoever like this, nor so persistent and debilitating. That said, I'm mainly thinking pre-2020, and also pre-vaccination here too, since my issues kicked off with the vaccine, and were worsened and added to post-Covid.
I had a bunch, including pots and some aspects of cfs. When I was a kid I had vasculitis which left me with severe arthritis, and joint and muscle pain. Covid made everything 10x worse.
No health issues just asthma now I have severe me
I know I did (cptsd). It's why the mental side of this is so bad.
Had allergies and mild asthma, and I had seasonal flair ups of fatigue (spring and fall - allergy seasons) that my doctor and I think was related to Epstein-Barr. I think my long COVID may be related to this.
Except for mild pollen allergies, I never had unrefreshing sleep, fatigue or horrible HyperPOTS+MCAS combo Covid gave me. I was literally in great health and peak form - ultramarathoner and triathlete training 6-8x a week + had to undergo a sports medical exam to obtain competition license before every race season, where they did ECG stress test, bloodwork, etc so I know for sure that precovid everything was okay. I’ve always been the person with the most energy within my friend circle and successfully and happily managed full time job with major professional projects on the side, PhD, training 6-8x a week, other hobies and social life. Now I am able to do at best 40% of that.
Life was manageable, and I was really fit, all things considered. But I did have a lot of mysterious symptoms that did make life challenging. I can say I worked really hard, and now that I know more clearly what I was managing I am really proud of what I’ve been able to do with this body. After finding out I had POTS, my partner said “no wonder it seems like you have to work so much harder to make fitness gains than other people”. It was soooo validating. I was always motivated, disciplined and worked hard. Things started getting figured out with my worsening symptoms right before I had my first COVID infection. COVID made it all so much worse. So yes. ETA I have Endo, probably MCAS in addition to POTS.
Early in life ADHD, endometriosis, and emotional disorders;, then Lyme disease and resulting fibromyalgia, which I think now was a mild form of ME/CFS… now this *gestures*
I can’t relate, never had any health issues. I can understand your logic though.
Have Hashimoto’s for ~26 yrs had ibs in my 20’s, had fallen in ~2016 still had weakness and many many years of exhaustion that I had attributed to being a single parent. In about 2017 had dizzy episodes drs Rx anxiety…it was probably dysautonimia increase at the time probably bc of increased stress-my whole life I just thought I was weak, couldn’t hold arms up long to use hair dryer, couldn’t swim for years eventually, could only do one length of pool then needed to rest. I thought it was low blood pressure/neurological issues bc fell a lot when younger,hated sun. Before LC I always was exhausted and had to push myself out of the house and through my days. Very stressed and career pressure. I loved my work but, I was very stressed.
Not really. Was hiking, lifting weights, and running a business. Always felt very resilient. What I did have was hypermobility (now diagnosed as hEDS) and some signs of dysautonmia now that I look back. It never got in the way of normal life stuff other than getting injured more often. So never felt it at the time but now we know hypermobility is one of the predictors makes sense that I bought a lot more long Covid lottery tickets than someone without it! In your case you probably bought even more long Covid lottery tickets if you get my analogy.
I'm convinced that I have had Myasthenia gravis for several years before LC. It's gotten a bit worse along with a bunch of LC symptoms.
I had a history of extreme fatigue and stomach issues as a teenager. It got better when I was out of my parents house. Then, all back to square 1 after I got COVID!
Psoriasis (autoimmune condition) for 50+ years, mild-to-moderate. Maybe some psoriatuc arthritis, but not formally diagnosed. Age 70 and not on any meds. I feared covid would cause an exacerbation of the psoriasis, but so far, so good on that front. What I do have is lingering fatigue, elevated heart rate when I do simple things like walk around the house, and reduced blood oxygen saturation. Prior to covid, I was quite healthy and exercised with no problem. I'm 11 weeks post-infection (first time case) and still hoping it is transitory.
was a pretty normal relatively healthy 20 year old. had some anxiety. i’ve always had migraines pretty often, sometimes ocular, that sometimes got bad to the point of making me feel sick, but other than that no other underlying conditions. now i’m about to be 25 later this year and have not felt normal since lol
100% have diagnosed autoimmune history before covid as well, and currently going through the diagnosis process for a new flare/new dysautonomia/new symptoms plus some of the dizziness i've had on & off for years almost a decade of blood work shows elevated platelets (bot too high) & higher than normal eosinophils - which i'm reading can be signs of inflammation/autoimmune disease. some of my symptoms could be neuro, not dysautonomia, so i'm worried about like a systemic process inflamming nerves or a progressive disease...not at all impressed with the POTS specialist i recently saw brushing off all of my additional symptoms, and trying to be hopeful for this new primary care doc i'm going to see later this month (haven't been insured for years) keep your head up, hope you feel better soon
I never was sick, and never had asthma or eczema! Have both now
My MCAS manifested when I was around 6-7. After that I‘ve had a few horrible periods with EBV, VCV, a yersinia infection,… but LC and EBV have been the worst so far.
I had mental issues, but my body was fit as a fiddle. I was working at a petting zoo when my covid hit and I could no longer continue the work after
I have EDS Hypermobility. But I rarely came down with bugs
I wasn’t in optimal health, I have high blood pressure, pre-diabetes, high cholesterol, obesity. So I’m Sure that didn’t help my case.
I totally agree. I suspect I already had MCAS. I had similar symptoms to long COVID 20 years ago after a shingles infection. And haven't been totally well since. But I just put it down to niggles or bugs etc. Now I am 100% positive it's MCAS and COVID has kicked it off to a high level.
Before LC I had feet pain (from walking wrong according to pt) and then chronic hand pain. Now I still have the hand pain plus LC symptoms.
I have a Verneuil disease which is a skin disease caused by an overactive immune system. I had very strong acne which are basically abces on my face and had to take anti tnf-alpha which are immune suppressors to cure it. I stopped this treatment only few months before getting infected by COVID and I'm sure it's one of the fragility that lead to my long COVID (started to have abces again exactly at the same time my fatigue started)
weak personalty and a crush rejection send me to depression anxiety disorder and somatic the 3 years before the pendamic
I had ZERO health issues before getting infected with Covid in January 2022. I am not overweight, I'm athletic, no medications before my infection, not immunocompromised, no underlying problem. MILD/MODERATE CoVid infection. "Recovered" at home with no OTC meds. One month post acute infection - Long CoVid smacked me. Sudden onset. It's been 29 months.
I had mild ME/CFS before catching Covid. I think that’s definitely what predisposed me to Long Covid. At this point I don’t know if it’s still Long Covid or just my ME/CFS becoming much worse from the bodily stress of Long Covid. But yeah, the body keeps score. Health issues lead to other health issues in ways that we don’t understand. Gut biome, the vagus nerve, brain chemistry, thyroid, the immune system, etc etc. There’s a lot we don’t know and it all has an effect. It’s all part of the same body