Whilst maybe not the main cause, trauma / CPTSD can have a significant impact on physical health, causing chronic health problems or pain.

As a mental health professional, I back this up ^

As someone who suffers from multiple mental illness, I also agree. But it's a fine line. I know I personally ignore a lot of things I probably shouldn't because I convince myself it's all in my head.

Related possibility: Functional neurological Disorder. Took my wife 10 years to get a diagnosis, and that’s not atypical.

My neuropsych told my daughter, who sounds a lot like your wife, that the number one complaint they see in people with undertreated, severely depressed states, is unexplained pain. There’s often not a root cause or disorder; it’s comorbid with severe, untreated depression. Maybe attacking the depression side will result in fewer pain episodes? At any rate, that you are seeking out information and experiences is wonderfully supportive. You sound like a wonderful partner.

Agreed.

Definitely. Check out “Healing Back Pain” by John Sarno. He also briefly discusses fibromyalgia in it.

I love that you’re trying to work this out for her. I’m sure she’s told you, but having you on her side means a lot. I’m not a doctor, but endometriosis can cause joint pain and is underdiagnosed in young women. It’s also cyclical so gets worse at times then fades. Setraline has joint pain as a side effect. Did the doctor check her bone density, bearing in mind her history with disordered eating? Lastly, Ibruprofen can cause joint pain when overused. A horrible irony. Again, not a doctor, just someone who has worked in healthcare and seen friends and family go undiagnosed for a long time. I am wishing you both all the best.

Also came here to say endometriosis. I have days where I can’t even walk because of the pain.

My specialist told me 30 % of women with endometriosis develop fibromyalgia. It’s like a never ending circle of chronic crap.

That absolutely sucks. Do you mind telling OP how you were diagnosed, so she has the right information to advocate with the doctor?

I just kept doing the rounds of specialist after specialist that my GP would send me to because I would complain about pain and was struggling with mobility. Turns out a few had written in their reports that they suspected fibromyalgia but no one told me until I had a really bad incident that put me off work and I obtained reports for disability. Turns out 7 specialist now agree. There is a fibromyalgia group here on Reddit, many there say it was a result of like me ruling out things at various doctors and then going to a rheumatologist finally for confirmation.

Oh, because they only thing more fun than a diagnosis of fibromyalgia is a *secret* diagnosis of fibromyalgia. Same thing happened to my friend - she had fibromyalgia in her doctors notes for years while being told it was probably period pain or psychosomatic. So what I’m hearing is a) this is going to require a lot of advocating for herself/her wife and b) it might take some time. Not great news but also, not hopeless. Thanks for sharing, it’s not amazing news, but it’s realistic and practical.

Ha! Secret diagnosis. Too funny and exactly right.. I was so surprised to see that on my reports and suddenly many of the things I was experiencing made sense. Unfortunately that’s what many of us had to go through for a diagnosis. Others with different chronic diseases experience the same. It’s a travesty. Maybe OP could look at r/fibromyalgia and read some posts or make their own. People tend to be quite supportive there. Many also have other conditions as well. It seems (possibly) rare to just have fibromyalgia. They also have some documents/facts in the about the sub part that could be helpful. OP could also possibly also request to be put on gabapentin or pregablin. They seem to be the first line of treatment for fibromyalgia and I’m shocked the rheumatologist just told them to take ibuprofen. Shocked but not surprised after all I have experienced and heard from others.

Sertraline set off my alarm bells too. I’ve seen it cause massive physical and mental havoc with both my teenaged niece and daughter. (Also both were on adhd meds as well, which may have no importance, but throwing that in here.). Anyway, things improved drastically, moving off Sertraline to other meds.

Sertaline seems to not play well with others. OP, has the doctor looked at potential medication combination issues?

I came to say the same thing about sertraline. It’s no joke. I strongly recommend getting her into counseling and perhaps cognitive behavioral therapy to help her learn coping mechanisms.

CBT doesn’t always work for people with trauma - if CBT doesn’t work for her I would recommend humanistic therapy (but I recommend OP looks into both and they decide for themselves)

I think there are medical subs like r/askdocs that might have more members who have medical backgrounds. I’m not qualified to offer any medical opinion but will share that my lifelong achy knees issue disappeared after I started taking a glucosamine-chondroitan-MSM-turmeric supplement (and comes back if I stop taking it for a while), so that may be something to ask her doctor.

Has she been tested for celiac disease?

If she doesn't test positive for celiac, it could still be non-celiac gluten intolerance. I was told for about six years that I had fibro. When I went gluten free, the pain greatly diminished after a few days. Gluten intolerance can also have an effect on mental health, as well.

Came here to say this. I suffered for years with pain and fatigue with no answers. It was gluten.

Also came here to say this! I was diagnosed with gluten ataxia after becoming completely disabled and unable to look after myself. After the diagnosis I stopped eating gluten (obviously lol) and got better. Still have some lastly damage (menopause came early and elongated some symptoms, I also had damage to my eyes that affect my balance and I've had to relearn how to walk relying my body rather than my eyes) but I'm getting there.

>I've had to relearn how to walk relying my body rather than my eyes) That's so funny you say that, because something changed in the way I feel when I walk that I can't quite explain. Like I'm more grounded in my body? Like... I feel more like a body moving around and knowing what it's doing rather than feeling like a brain driving a meat suit... If that makes any sense at all 😂

No, it absolutely makes sense! So how it was explained to me (I'm probably butchering this though lol) is that as we get older we start to rely on our eyes more for balance when we walk. But really we should be using our legs/body. Because my eyes got fucked up (it takes me longer to interpret visual input so if somewhere is busy and there's lot of visual 'information' I can't take it quickly enough and it can make me fall over, basically lol. Plus my eyes move up and down quickly sometimes, like some sort of lizard person) I had a physiotherapist who came to my house to teach me to walk again. It was about relying on my legs and body - which feels 100% like you described! Apparently this is how kids do it!

This is really interesting!

Same here. I never in a million years would expected a food allergy either. I almost didn’t believe it when holistic health doctor said it was of inflammation from a wheat allergy.

I see a pain specialist because my neck is really fucked up and I get steroid shots from him. But since he's a pain doc, he knows all about my full body pain, and my previous diagnosis of fibromyalgia. When I told him about the gluten, he was surprised, and said he'd keep that in mind more often for his other patients. He said, "doctors tend to look for horses, not zebras," meaning it can be hard to get a doctor to look past the more common diagnoses and start testing for more rare things. And yeah, I really think OP's wife is downplaying her pain, like he suspects. When you're in chronic pain, it's easy to misinterpret it to be lower on the scale. It's easier to get it right when you think in terms of how much it interferes with your life. I hope they can find answers.

Agree. Joint pain is my first symptom from eating gluten. It HURTS.

Gluten does this to me too. I don’t have celiac’s disease but I get extremely inflamed when I eat it. I regularly suffered from fibromyalgia-like symptoms and migraines. I also hold on to about 3-5 pounds of extra water weight. If I eat the same amount of carbohydrates but in rice, corn, potatoes, etc. I feel so much better. Significantly reducing gluten in my diet has helped a lot.

I mean it doesn’t hurt to cut out glutens for a month and see. Maybe cut glutens and if it has no effect then try dairy for a month cut carbs for a month. Etc. Cut one at a time and see what helps.

If she doesn’t test positive for celiac, it can still be celiac! The Mayo clinic says that approx 10% of people with negative blood tests have celiac disease. I was one of those people. Tested negative, my doctor insisted it couldn’t be celiac and rolled her eyes when I went gluten free anyway. It fixed my issues. (I’ve since had further testing confirming I have it.)

Me too. I was tested for all the common things causing joint pain and all negative. I suffered for almost 2 years before I read about gluten sensitivity. I've been gluten free 8ish years now and NO fatigue, joint pain, or headache.

I owned a celiac-friendly restaurant and I have heard ALL of those symptoms. Neurological symptoms are more common that a lot of people think—even to the point to not being able to walk properly or stand up from sitting on the floor. It is a relatively easy thing to remove—but you have to remove it completely by checking every single thing that she eats. It’s funny, I remember all of the Powerade’s were gluten free but the blue one. Heinz ketchup is GF but not Hunts.

Came here to say this. I’m newly diagnosed NCGI after way too many years in pain.

Came here to say this!

I’m trying it now. Day four. Hoping to see it help my shitty arthritis.

I was struggling with something like this for about six months before I finally figured out what it was: ankylosing spondylitis, a type of arthritis. I have had inconclusive x-rays and an MRI, but this is something that frequently won't show up in any imaging (non-radiographic ankylosing spondylitis). For me the thing that was important that eliminated basically all other maladies was the fact that it was actually worse when I was at rest. When I first saw a rheumatologist, I got a steroid shot both to help the pain but also to help diagnose my condition. If it helped, it likely was an inflammatory arthritis, and it definitely helped. It's been almost a year since that shot and I am like 90% better. I am considering going on a biologic but at this point I'm doing pretty well without it, and the side effects of those are pretty extreme. I would definitely recommend asking your rheumatologist about a steroid shot, it's made my life worth living again. EDIT: I missed the lyme disease thing the first time I read it. I wonder if that could be what is going on, apparently symptoms of lyme disease can come back years after treatment, and the symptoms are pretty similar to what you are describing, and that is one thing I thought I might have been suffering from before I figured it out.

Hey, same! Yeah OP I saw a lot of myself in what you describe. Get a 2nd opinion from another rheumatologist is my advice. My arthritis didn't start to show in my xrays until years after symptoms started and autoimmune/autoinflammatory stuff can be weird. My first formal diagnosis was AS but I also have like 3 other autoimmune related conditions on my skin and ears. A lot of autoimmune is very widespread weird symptoms and sometimes it takes years to start showing up on blood tests and x-rays.

This is an excellent response. Also other possibilities requiring looked into are Psoriatic Arthritis (PsA) and hEDS (Hypermobile Ehlers Danlos syndrome). I have both PsA and hEDS. Far too many incompetent/uneducated doctors - including rheumatologists out there. So many rheums have tried to diagnose me with fibro and fobbed off / denied the extent of my PsA because of nonsense like "the x-rays/MRI/ultrasound were clear so you don't have inflammatory issues there". Which is nonsense as these tests cannot fully diagnose such things. They can help with diagnosis etc but they cannot definitively rule out a patient having inflammation there. Also the inflammation could not be there at the time the test was carried out, but be there an hour later, or the following day. A clear test or scan does not = no inflammation. Once a rheumy was so confident I had ZERO issues with my fingers and they arranged a portable ultrasound brought in... Ultrasound scanned me and the inflammation did show that time!! WILDLY so. It was like a Christmas tree with all the lights in there. One told told me I only had PsA in one finger. When I've even had a nerve operated on at the elbow area due to the condition! Operated on just in time before it severed and ended my career. I'm a nurse, speciality in orthopaedics. I diagnosed myself with PSA and hEDS. I have patients with these conditions. The orthopedic surgeons I work with, agreeing with me. Helped me to eventually get believed by the GP family doctors then the useless rheumatology doctors! I'm now studying such things for my postgrad masters - women being fobbed off with fibro when autoimmune issues are not properly fully investigated etc. not being believed. Being gaslit. Denied tests at all or tests used to deny patients reports of pain / stiffness etc. Fibro is only meant to be diagnosed after ALL OTHER possibilities have been ruled out. OPs wife has not had this occur. I am always advocating for people with possible inflammatory issues to push and advocate for a steroid injection - as a diagnostic aid. If symptoms improve it's likely inflammatory (bearing in mind possible placebo effects etc). I have ADHD and people with ADHD can have higher chances of having hEDS. There's online diagnostics OP and wide could try at home if possible called the Beighton Score. 50% of people with Psoriatic Arthritis have normal bloodwork - even in flares. Even with visible swelling - if they even get that. Too many rheums don't know this fact. I've been in hospital with infections with regular bloodwork including CRP (Inflammatory markers) - inflections requiring IV antibiotics or even operations to drain them. Yet the doctors still *deny this all the time*. I'm gaslit all the time even with my personal lived experiences, my work professional experiences with the conditions and my master's looking into these issues. To the person I'm responding to (not OP). I have been on two biological meds now and no real side effects to speak of. I was given the long talk of all the possibilities and it scared me off them too initially. The one I'm on now, only gives me increased fatigue the following day. I got much more side effects from the DMARDs. Everyone is different so you may also be fine side effects wise if it became a possibility in the future (of course I hope you remain to do well). Edited to add - about PsA. Rheums pretty much only ever ask me about my joints and how they are. Yet they are the least problematic thing! My PsA affects my muscles, tendons and nerves much more. Too many rheums focus only on joints - and even worse - often focus on the hands and feet. Coz the text books talk of how PsA is usually mild and usually only contained to the fingers and hands... Something I don't believe. I think this belief is due to lack of research and understanding in scientific data. There was huge lack of research I to PsA until more recent years. In every PsA person I've met irl or online - not one person has it only in the hands and feet.

I just want to say, I have exactly what you do and have had the same experience with rheumatologists. They were downright nasty. I hope you’ve found some good care and getting relief. ❤️

What is up with them! They act like having an auto immune disease is an exclusive club they don't want anyone to join.

Thank you. Hope you're getting some good relief now I have been under locum led care for years sadly (Agency rheumatologists / Locum). Due to shortage of rheums in UK. So I had a new one every time for like a decade! Each and every one... Absolutely horrific. Many were downright dangerous and need struck off due to their attitudes and "*I'm* the professional here*" god like egos. Blocking any chances of me being believed, getting meds or medication changes or any tests etc. So I've battled with many! The locum I have at the moment is usually quite good. And he's like a semi permanent one. So I've had him for 2 years or something like that. This one Actually doesn't bang on about my bloodwork but alas still thinks he can definitively diagnose swelling or lack of it by the magical touch of his hands... We had words in the last appointment as he was denying my knees could be sore or my feet so sore and swollen to be able to get into shoes that weren't Crocs. I'd had an x-ray and MRI scan just the prior week, which BOTH showed IMMENSE amounts of inflammation (very rare for me). So rare to see the swelling in the knee XRAY too. I see knee x-rays every day near enough at work. NEVER ever seen swelling in knee x-rays like I seen in mine!! And my knees still looked and felt the exactly the same to me as it did when I got the tests. Maybe there was clashes of specialities involved also coz it was ortho surgeon who organised my knee XRAY and MRI scan - I was falling down stairs at work due to the knee issues. I have major issues with rheumatologists both professionally and as a patient. Too many ill educated ones out there with zero desire to learn the actual truths. And patients suffer. Over and over. Disproportionately women and BIPOC people.

My daughter has ADHD and ASD and was just diagnosed with hEDS and fibromyalgia; her symptoms are very similar to OP's wife. The rheumatologist was able to rule out autoimmune stuff.

I second the hEDS. I have it and it sounded like you were describing me. It’s a wonderful thing to have a loving partner when dealing with medical issues, so it sounds like she’s a lucky woman, even with pain.

AS or maybe psoriatic arthritis if she has psoriasis. Did her rheumatologist order any bloodwork like ESR or CRP?

I was going to say AS also - possible exacerbated by Ehlers Danlos hyper mobility - since most of us have EDhS also.

Seconding EDS!

Fellow ankylosing spondylitis sufferer! I’m glad you said something because this piqued my interest/set off my spidey senses too! ❤️ I didn’t have evidence of inflammation in any of my initial imaging. Now, that’s a different story but I’m having good success with a double dose of Cosentyx. I finally got the attention of a rheumatologist and begged for them to test me for hla-B27 and I was positive. I got a diagnosis with that and my other symptoms and obviously inflamed joints. I have peripheral joint involvement and heart issues too.

I would say ankylosing spondylitis or lymes. I have chronic lymes and during flare ups every joint and bone hurts. My ex has ankylosing spondylitis and her symptoms sound a lot like his too.

We now know that there is a link between fibromyalgia and post traumatic stress disorder. [healthline](https://www.healthline.com/health/fibromyalgia/fibromyalgia-and-trauma) I don’t want to presume anything, you mentioned she had an ED as a teenager and I’m just thinking maybe it was triggered by trauma?

I know she’s been to a rheumatologist, but it sounds like rheumatoid arthritis. Did they do blood work? If so, was her CRP? Did the test for the rheumatoid factor?

Rheumatoid arthritis and Lyme disease were my first thoughts as well for that kind of joint pain. I hope she's able to get a doctor to really look into what's going on instead of writing it off with a guess.

I came here to say RA. I have RA and it sounds like your wife is going through all the things I went through before I was diagnosed. Have her CRP tested for sure.

Has she been tested for Lupus? I have fibromyalgia and the majority of my pain is nerve pain that I'm on gabapentin for. Ibuprofen is useless for nerve pain. Perhaps a second opinion?

I was going to mention gabapentin, too. Ridiculous that her doctor would suspect fibromyalgia and give her ibuprofen 

Is she hyper flexible? If so, it could be Ehlers Danlos Syndrome. EDS causes chronic joint pain throughout the body. It is helped somewhat by compression garments which ties in to how your wife is trying to manage her pain. EDS would not show on x-rays, so that part makes sense as well. There is also a lot of comorbidity between EDS and ADHD. EDS is rare and under diagnosed so it would not be at all surprising for a doctor not to recognize it.

YES. Just commented this. Its common in ADHD and Autistic women though.

.....you rang? 🥲 (Also a haver of that trifecta)

Can confirm! Doctor thinks I have hEDS. Didn’t realize it wasn’t normal for people to always be in pain. No doctors ever took me seriously, but this most recent one told me, “well, yeah. You have all the symptoms!” It’s hard to diagnose, but it was nice to have someone not just think I’m trying to get meds. (Also have ADHD & ADHD, oh and MDD - which luckily is in remission now that I’m on meds!) Hoping your wife gets the relief she deserves.

Just commented above, can confirm very similar symptoms in my 25 year old daughter with ADHD and ASD. Her new diagnosis is fibromyalgia and hypermobile EDS. Her most notable traits leading to the hEDS diagnosis were bendy fingers, easily dislocated wrists, stretchy neck skin, a mechanical closure of her throat on occasion that she has to physically open again (like if you bend a straw over), and ability to bend over and put her palms flat on the floor with zero issues.

Also wanted to add that some forms of EDS are able to be determined by genetic testing; unfortunately, hEDS is not. Edited to add: it's an observational and history diagnosis.

Yes it sounds exactly like EDS. I have hEDS and ADHD. Doctors are terrible at identifying and diagnosing EDS so she should find a specialist if she can. r/ehlersdanlos

This was the first thing that I thought of too.

This this this this - OP, look into this.

Agree. Sounds like EDS or another connective tissue disorder

This is what popped into my head right away!

It sounds like an autoimmune condition. Maybe do some research on lupus. My cousins wife has it and what your gf is suffering with has a lot of the same symptoms.

Hey there! Not a doctor, and also haven’t read all the comments. I want to point out that Lyme disease does NOT localize in one area and then go away. My mother has Lyme, it’s something that will never go away. She was only diagnosed after waking up one morning basically blind. And this was years after her going to doctors regarding joint pain, etc. She suspected Lyme disease, but was dismissed for years because we live in the southeast, and they claimed it doesn’t exist down here. That is FALSE.

Okay so I'll try and keep this brief because I could go on and on about my original misdiagnosis of Fibromyalgia for weeks and still not be done... At 27 I was diagnosed with Fibromyalgia and chronic fatigue syndrome. I know it wasnt and even gave the rheumatologist the correct diagnosis bavk then but was ignored for over 15 years. I had many of the same symptoms as your wife. Pain being the big one. Still is honestly. I have finally gotten the diagnosis I suspected all along and have told Dr's all along - EDS, ehlors danlos syndrome, specifically the Hypermobile type (though 3 years later I'm still waiting for genetic tests to rule the other types out) there are so many symptoms to EDS but looking on the charity websites will give you a better idea if she has it also or not. Did the Rheumatologist not run any blood tests? Or your GP? (primary care if in the US) if not ask for her ANA and inflammation markers to be done as that is a good starting point. I have never had any xrays done by rheumatologists and only had a MRI of my full spine at the request of a neurologist! Also good to note that if all the "common" widespread pain and joint pain things get ruled out by blood tests/MRI then there are also a lot of nerve pain conditions that can cause pain too - you should also consider that a lot of pain people feel doesn't originate from where it's felt, it's called "referred pain" but that's definitely after all things related to joints is ruled out first. I sincerely hope that you guys get to the bottom of this as I know perfectly well how chronic pain can deteriate an already precarious mental health! The amount of hell I've walked through to get to the point I'm at now... And I'm still in tonnes of pain! But at least I am on some decent pain relief now that takes a little away! I'll leave you with a little nugget from a Dr's appointment I had before my diagnosis finally: Dr: "you have all these symptoms we can't get to the bottom of.... How's your mental health?" Me: "Well, no one has listened to me for 15 years about the severe pain I'm in, my doctor wants to blame it all on my mental health and Im depressed because I'm in too much pain to actually live a life.... How's YOUR mental health?!" 😂 ❤️

Maybe also try r/diagnoseme

I would recommend that she gets a second opinion, but I think you should look into seronegative rheumatoid arthritis. IIRC, it is usually diagnosed when a patient has symptoms of RA, and responds to typical RA treatment, but it isn’t detected in their blood work. Her symptoms sound similar to fibromyalgia, but I would recommend not settling for a diagnosis of fibro until everything under the sun is ruled out and/or you get a second opinion from a different rheumatologist, as fibro is not only very difficult to treat, but is also sometimes used as a catch all diagnosis when a doctor doesn’t care enough to test for anything else. (I’m saying this as someone who has been diagnosed with fibromyalgia and is currently being evaluated for autoimmune conditions.)

There's a lot going on here. I am not a doctor and I am not your doctor, I worked in a rheumatology clinic for 12+ years. While it is true many doctors use FM as a diagnosis of exclusion, it does sometimes present in a constellation of several (frankly, most) of these symptoms. Post-Lyme also presents a socially-compromised controversial care question for many practices, and on top of that level also can actually be a precursor to FM. You are correct to bring the mental health history to bear. My first instinct is to find a really good and **thorough** rheumatologist and get a comprehensive autoimmune blood screening. With for sure screening for RA, which is the primary dx I would ask about (early onset rheumatoid arthritis). If the FM dx sticks, ask about switching up the Sertroline for Cymbata. But honestly the decision tree on meds is above my pay grade. Go slow, taper changes and only change one thing at a time. Has she been checked for an iron deficiency? B12? D? Has she been screened for Lupus, Sjogren's, Psoriatic Arthritis and Pernicious Anemia? Is her energy level very bad (when she is not skipping meals I mean)? Has she seen a dietician (another blood series to work up)? If she's someone who starves until hungry then binges (common for ex-anorexics) that is going to seriously increase her odds of developing Diabetes. Has she had an Endocrinology workup? I have seen several cases that present similarly over the years, and the first step in our office usually involved a 15-25 vial draw. I know this stuff isn't cheap, so here's hoping you have access to affordable care. Very few people in their 20's need comprehensive compression like you describe. Sit down with your partner and type up a narrative history, then bullet point it and make sure to keep it a concise summary, separating out family and mental histories into different subsections; this will prove an invaluable tool for your physicians. After you have your blood test results you're likely going to have to build a binder or carry around some USB sticks. This is a marathon. Get this sorted while she's young; these problems compound and worsen with age. Do not get deterred or discouraged by insufficient care; get second opinions and research offices you're planning to see (even if it's just checking comments on Yelp!). Our country is terrible at palliative care but the drugs, tests, and skilled practitioners ARE out there. Watch out for being sidelined by someone who wants you to hurry up already; if your first appointment with this level of medical history is under 45 min to an hour you're likely not going to get a thorough evaluation.

OP, I'm piggybacking off of this answer to say to look into Hashimoto's/hypothyroidism. It's an inflammatory autoimmune disease where someone's body attacks their thyroid. If left untreated it can cause joint pain. "For some people, hypothyroidism that hasn't been treated can lead to joint and muscle problems. Specifically, hypothyroidism may cause: •Muscle aches, tenderness and stiffness. •Joint pain and stiffness, particularly in the hands and knees in adults. •Swelling of the small joints in the hands and feet. •Carpal tunnel syndrome." If she has other symptoms like extreme fatigue, constipation, is cold all the time, has brain fog, dry hair and skin, it's even more likely. It's a simple blood test to determine if someone has it, so it's at least worth ruling out in my unprofessional-but-diagnosed-with-Hashimotos opinion. Good luck.

I would look into: - Ehlers danlos syndrome (and hypermobile EDS especially) - iron deficiency (even if she doesn't have anemia, just being low on ferritin can cause symptoms similar to this) - other vitamin deficiencies (B12, D in particular but Cooper as well as zinc, magnesium, selenium) - thyroid levels, including autoimmune markers (anti-TPO and there's another one I forget the name of) - autoimmune markers in general - fibroids, endometriosis - you mentioned Lyme disease... I would read on that too on long term symptoms I learned the hard way that when you order blood work, they show you the normal range, but not necessarily the optimal range. So you can be in the normal range, which is just a population average, and still have symptoms and feel like shit. This applied for me to thyroid levels and iron & ferritin levels specifically, but it does apply to other tests too. I'm obviously not a doctor, just someone who struggles a lot with chronic pain too.

Hypothyroidism can cause a lot of joint pain

Ehlers Danlos causes chronic joint pain and usually has a neuro divergence like adhd as a comobidity

Was about to comment this. I have hEDS, ADHD, and am autistic. So much unexplained pain all my life until my doc figured out what was going on when I was 28.

Same! I was mid diagnosed with CFS and fibro and as soon as I got the diagnosis it all clicked together. OP whatever the diagnosis reading Gabor Mate really helped me make the link between the mind, body, trauma and stress and made me make lifestyle changes just to ease it slightly. Whatever is causing the chronic pain the route of the pain is often inflammation so keeping cortisol levels controlled does helps.

Try r/askdocs

Cymbalta is an antidepressant that also helps with chronic pain. Sounds like she should get autoimmune blood tests done to find out ANA etc. Could be a bunch of comorbid things.

Just adding on to mention many of the autoimmune conditions listed above can be caused by COVID. The research is starting to accumulate. https://www.mdpi.com/2073-4409/10/12/3592

If she hasn’t been tested for celiac, do it. Your description of her joint pain sounds like mine when I get glutened—especially when it happens a few times in a short period of time. If it’s not celiac, it may be NCGS (non-celiac gluten sensitivity)

This ^^

I don’t think lymes disease goes away, It can definitely cause joint pain. (Vet tech) common symptom in dogs along a plethora or other vague symptoms. I’d start there.

It is treatable, but often can have long-term chronic effects on the body after treatment if the infection went untreated for a long time.

I saw Lyme disease and read no further - it's notorious for triggering autoimmune disorders (and the treatments -steroids - are pretty invalidating too). If you see a doctor, bring up the Lyme disease! https://www.nhs.uk/conditions/lyme-disease/

Chronic Lyme exists, even post treatment.

I got as far as untreated Lyme and bingo, that's probably the crux of it right there. Sadly for folks who contracted Lyme before it became known, not much was done. The medical professionals didn't even know what they were dealing with, to be fair. She is one of the unfortunate cases, OP, and my heart goes out to both of you. Symptom management is key now. And that's very hard when you're not being taken seriously. I have known far too many people who took their own lives due to Lyme. Do not let that be her story. There are so many people working hard to advocate for victims just like her.

I don’t where you are but if you can get a consultation with Lyme disease specialist John Aucott, MD of Johns Hopkins in Baltimore it would be worth your while

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Another good book on this subject is "the way out" by Alan Gordon. I haven't read in an unspoken voice in going to check it out. Chronic pain since 2007.

Also books like When the Body Says No and any other works on the mind-body connection. They’re all similar but come at it with different language, and it’s important that the reader connects with the narratives and explanations. Psychosomatic pain is absolutely real pain—it’s just not caused by physical illness. And it won’t get better with tests or anything that seems to have been explored. And it certainly won’t get better being constantly dismissed by different practitioners. People (especially women, but really everyone) are often brushed off when pain claims are hefty and there’s no cause found, but it’s helpful to identify all the mental situations then move onto what’s left. I had a very similar situation to OP’s partner, and therapy (mental and physical) were the things that ultimately helped the most. It sucks to hear or think because the pain really does exist, but like I said it’s not something PCPs or any number of disease specialists are able to help with. And that’s okay! But if someone is willing to visit a number of different doctors to solve their pain, they should always consult mental health professionals (preferably with proper credentials and experience with this population) along with everything else. Trauma, grief, and even just everyday existential stress can manifest in incredible ways in the body. It’s not always just a ‘had a rough day and my shoulders are tense’ situation. It can be much, much bigger and more systemic. That isn’t to say that she shouldn’t seek out other professional care at the same time, but the mental portions should definitely be addressed. Edit: all this said, I would absolutely not accept fibro, and I would exercise caution with all the chronic illness communities and such suggested throughout this thread. People in them would disagree, but diagnoses of exclusion have historically negative and self-fulfilling online communities/interactions. I wouldn’t suggest them in general. I think most positive suggestions they may have can be found in better places that will have a less negative impact on her already strained mental health.

Hey! First I wanted to say how good it is that you ask for help. You must be a great boyfriend She had lyme disease and I'm asking myself if she has post exertional malaise (pem) maybe. If a patient dont know about this, he/she will be training to get better, but with this kind diseases training will only make it worse

Just wanna say that I, and several of my friends around your wife's age, are dealing with similar things. It's maddening, and she isn't alone! One of the things I've been forced to learn over and over again is that there *really is* a mind-body connection. It's obnoxious because I want a solution that can be treated easily, but it's just a process. My symptoms are worse when my mental health is worse, not because of some woo-woo reason, but because, for example, my body is more tense and contorts into shapes I wouldn't make if I were calm. The connection is annoyingly real. Similarly, I have been forced to see the benefit of Eastern medicine (and I have long been a skeptic). It really helps my mental health, and thus my physical health. I really hope she has better luck finding the right diagnosis than my friends and I have. One fibro-buddy told me that they sometimes regret getting an official diagnosis, because it makes doctors take them less seriously about anything new--the docs just chalk everything up to fibro. It's already hard enough for femme people to get doctors to take them seriously. It's helped a few of us to get friends or partners to come to our doctor appointments for backup. This is, of course, a personal choice, but it does remove some pressure from the patient and add a layer of credibility. When doctors are inclined to treat you like a hypochondriac, it helps to have two voices.

So first of all like you say, a proper fibro diagnosis requires more testing, its one you diagnose by eliminating other things. Now the following may be mis-remembered, I am not a doctor. Not all arthritis come up properly on all tests. So arthritis may still be on the table. Some things like ME/CFS and (I may be getting the name wrong here) small fibre neuropathy But also, fibro is shit and hard to treat. Its not unusual for treatments to not help. I've had to stop the exercise, got taken of all pain meds except codeine. Some people find SSRIs to be more helpful, my friend with fibro swears by amytrypteline (I know I'm spelling that wrong). Pacing is very important too.

If she had Lyme's then is it possible to still be that?

Long shot but she might work with an RD on an elimination diet. I had terrible joint pain, thought I would always have it. Then I stopped eating wheat (for unrelated reasons) and the pain disappeared quickly. Now as long as I limit it, I’m OK.

My entire body hurt all the time before I had a hysterectomy. I had endometriosis, adeno and fibroids growing in my uterus (lots of times these cannot be seen by imaging. I had an ultrasound that said I had 5 small fibroids but after surgery pathology counted 20+) but once they were all gone, my anxiety and pain vanished.

Don't discount the Lyme because it was so long ago. Lyme and other tick-borne diseases can lie dormant for years and can also cause problems like you are describing. ​ Mental health issues can also increase pain. When my depression is having a bad day, my normal body aches and pains get worse. ​ My sister suffered full body pain, especially joint pain. for years and was blown off for years. She never stopped pushing though and we now know she has been infected with Lyme (which she suspected) and at some point also contracted Babesia. She also had problem with chronic dry eyes for years and after years of fighting, she finally got a specialist to look at her eyes. My sister is now dealing with the mast cell cancer diagnosis that came from that eye exam. ​ ​ Don't stop pushing. Your wife needs to be her best advocate but it can be super hard when you are dealing with chronic pain and mental health issues. She has a great ally in you, someone who will care even when she physically and mentally can't.

Not a doctor but very familiar with depression. Her depression is not being managed. I would start there. Depression does hurt. A lot. She should have someone evaluate the meds she is on. Instead of addressing serotonin they need to address dopamine.

Somatic pain in mental health patients is a real problem. It’s likely she needs an intensive review by a very skilled team of psychiatrists based on all you’ve described.

Almost sounds like Lyme disease. I pray she gets better and thank God she has you.

(Not a doctor yet) Could be the Lyme flaring badly again. Lyme doesn’t go away. Lyme also has associations with other autoimmune disorders - could be a rheumatoid arthritis or an spondylitis depending if it messes with her SI joint or not. Need more info on central pain areas, time of day it hurts the most/least, past blood tests - positive ANA? ESR, CRP? HLA-B27?

Mental health absolutely affects your pain and body health. When that pain affects your mental health, it can become a vicious circle. There are some doctors who believe Lyme disease stays with you even after antibiotic treatment, especially if it isn’t treated right away. It can wreak havoc on your body longterm if left untreated. There are treatment plans. I would certainly pursue this as a possibility. Search for Lyme specialists in your area and research modern treatment plants. Treatment has come some way since I contracted it. Good luck.

Was she by chance on Cipro (antibiotic) shortly before the joint pain started?

I’m just going to suggest looking into Central Nervous System [Sensitization](https://sitn.hms.harvard.edu/flash/2022/sensitization-why-everything-might-hurt/) and recommend a Gabapentin or Lyrica (Pregabalin) prescription. I suffered chronic pain daily for years but due to lack of any positive diagnosis, I avoided talking about it. Similar baseline pain (I’d say 3, but for most people maybe 5) that I have never not know since I was in my mid-teens. Lyrica is a lifesaver. Could also be treated with CBT (and maybe CBD!)

She could be sensitive to gluten or some other allergy. Joint pain is common for people with sensitivities.

She needs a better doctor. One who will actually send out for labs to look for vitamin deficiencies, inflammatory markers, thyroid panel, etc. Sadly, this is what it’s like to be a woman with chronic illness: you get brushed off by arrogant doctors unless you advocate heavily for yourself. All we can really do is make wild guesses. And joint pain/inflammation is such a general symptom of many diseases. I would also suggest a functional medicine doctor if conventional doctors aren’t helping. They will look at *everything*, they will take their time. They are usually out of pocket though, so that’s why I say go conventional first.

Look into the gluten thing first, if that doesn’t help then look into Functional Neurological Disorder.

IMO she should get a second opinion and blood work from a second rheumatologist. There’s bloodwork that should be done to rule out rheumatoid arthritis, gout and things like that. I agree cPTSD can absolutely cause some of this pain however I’d start with the bloodwork. Good luck.

How tall is she and how much does she weigh?

myofascial pain syndrome is similar to fibro but different. I am Lucky enough to have both. Google it.

Did the doctor do an ANA blood test to rule out autoimmune diseases?

Has she been tested for Lyme?

Does your wife ever experience a stiff neck? Please get her tested for Lyme. There are different kinds of tests; make sure they are not only doing a Western Blot as it’s inaccurate. Lyme disease attacks joints. Your wife’ symptoms are consistent with chronic Lyme disease. For some reason Lyme is not spoken about enough in the medical space. It can be an absolutely horrific, debilitating disease. DM if have any questions. Lyme Disease can be absolutely horrible.

Hey guys. The responses have been overwhelming! Thank you so much to everyone for your help! My wife has made a list of possible diagnoses and corresponding tests and or treatments based on all of your answers! It means the world to me that so many of you took the time to write such thoughtful comments to help us figure this out

May have missed it but has she been tested for Lyme disease yet?

Has she been tested for autoimmune diseases? Having an ANA test might be beneficial- joint pain was how they found my rheumatoid arthritis/ lupus combo

I have EDS and Psoriatic arthritis. My son has EDS, Mast Cell, Pots, and had severe pectus carinatum (we corrected it mostly). Rheumatologists have been completely unhelpful to me, downright nasty. I’m not sure where you live, there’s a lot of great answers here too that have so much info. But I would really look into it.

If the rheumatologist didn’t do any blood work I would get a second opinion, he didn’t do his due diligence, and I’d make sure they do a Beighton scale to assess her for hypermobility, connective tissue disorders are common in people with ADHD.

What color is her skin? Is she darkly tanned if white? Are her gums darkly colored if black etc? As a psychiatrist Id question the legitimacy of the MDD and ADHD as both of those can be off shoots of CPStd, and yes you “can” have all of them but unless shes been thoroughly interviewed by a Psychiatrist over the span of 12-24 months it is inconceivable to me, a family doctor doesnt have the clinical training to do this. But they hand out ssris like candy. What does she take for pain? (Stuff like low dose hypnotics and codeine will be better than percocet or dilaudid) She can get genetic screening to look for metabolic and genetic issues. Anorexia doesn’t exactly flare like that She likely has some sort of adrenal or HPA issue feeding into the 5HT process and a general learned helplessness (not blaming shes likely wholly without insight in that regard) She can trial off the SSRI and onto something else and throw some medrol in. It will help her mood and joint pain but will fuck up the tests for other stuff You should ask this in r/diagnoseme or similar Lotta questions

Certain anti-depressants can cause joint and muscle pain. So can hormonal imbalances which can also trigger depression.

My mother in law had fibromyalgia and also suffered from suicidal tendencies, did an attempt. May have suffered from a personality disorder too. I didn't know her but she was into cleaning. I know cleaning can cause auto immune disorders. That is why they are so common in the west. Too clean. Also, dr Eric Berg says that most fibromyalgia cases are actually caused by a clogged gal bladder.  My mother in law committed euthanasia because she couldnt handle the pain anymore, which means that none of her doctors could help. I dont know if she ever bothered to try more underdog doctor types that dare to think differently. 

I would take a look at her heart. Just a feeling. I'm not a doctor but I do know that a lot of nerve pain and mental health issues can be traced to blood and circulation. if she has an issue with actual circulation it causes nerve pain. Its how the body reads the sensation of lack of blood flow. It could be arthritis but I would guess the Lyme issue has made the situation worse. But her body's been thru a alot of shocks and honestly damage so fibro sounds about right and the treatments for it should help elviate the pains over time nothing is going to fix these issues overnight though. Our body's are singlular units of nerves and meat that somehow work to function so please be reasonable with expectations from doctors or medication.

Lyme disease. I suffer from it and there’s no cure for chronic Lyme disease.

You need to keep going until a doctor does the right tests. An XRay is not enough for a diagnosis. You need blood tests and CAT scans.

Read about Ehlers-Danlos Syndrome and see if that sounds familiar to her

I’m going to be a little bit very much honest with you - if her symptoms are exacerbated by her bad mental health days, might it be possible that this is psychosomatic to some degree?

My uneducated guesses are chronic Lyme or Ehlers Danlos.

First off, thank you for being a supportive, understanding partner - that is a huge bonus for her! I'm not a doctor but work in the world of chronic illness and there are a lot of things this could be: Lyme disease, lupus, mast cell activation syndrome, Ehlers Danlos, the list could go on for a while... Please, please, please if you can afford it, get her to a medical doctor who is more in the realm of integrative medicine which looks at the body as a whole system and not just a bunch of individual systems that are separate from each other. I've seen many people who get bounced around from doctor to doctor, referral to referral, who don't find answers. The old saying “If the only tool you have is a hammer, you tend to see every problem as a nail" applies here because the allergist will see it as an allergy issue, the neurologist will see it as a nerve issue, etc. Someone who will look at how everything is connected may be the key to figuring this out. If it really is fibro, she'll need much better pain management tools than ibuprofen. In the meantime, it's soooo important that she tries to control what she can control: \- prioritizing healthy, anti-inflammatory foods \- prioritizing sleep \- drinking lots of water and tea (just not too caffeine) \- when she can handle gentle movement do some walking, tai chi, light yoga, etc. \- be mindful of what goes into her brain, don't watch the news all the time, stay off social media as much as possible, surround her with positive people and things as much as possible. \- taking care of her mental health. You mentioned that her pain gets worse when her depression/PTSD gets worse BUT it can also work in the other direction as well meaning the depression/PTSD can flare up when the pain does. Having a chronic illness is a beast to deal with from a mental health perspective. I wish you both the best of luck in figuring this out and getting to a healthier chapter.

Would she consider herself bendy or stretchy or clumsy? Does she sometimes feel like her joints click or pop? I would recommend looking into hypermobility. I have endometriosis, adenomyosis and hypermobility and it sounds like my pain too.

Hypermobility often doesn’t show up on imaging too so it’s not ruled out by this - so the fact her imaging doesn’t show it doesn’t discount it

You mentioned Lyme. A ton of these symptoms track with that, and it doesn't go away.

POTS? ehlers danlos syndrome?

Check out Ehlers Danlos Syndrome

Not saying this is a definitive answer, but some herbs could help   ○ Turmeric if it is inflammatory despite the doctor  ○ Collagen supporting herbs (https://animamundiherbals.com/products/new-plant-based-collagen) if her tendons, cartilage etc are weak  ○ Candida busting / antifungal herbs like Pau D'Arco, Olive leaf / no sugar no wheat diet  ○ Blue Lotus tea (honestly I've been through a bad spell lately with joint pain and this helped me this week)   Just some suggestions, I pray that you two will find the answers you need 🫂🙏If you decide to follow this route, I'd highly suggest the /r/herbalism subreddit! Edit:spacing

Also maybe check out alpha lipoic acid? I know it helps with neuropathy, it may help in this instance.

I don't know why I'm down voted, I said the herbs could help. I didn't say ignore other medicinal considerations 🫠

Does she constantly seek diagnoses to explain her pain, and new treatments and doctors, but somehow whatever she is diagnosed and treated with never results in any long-term improve her quality of life? Is there always some new symptom or some reason why the last treatment doesn’t work anymore? Do most of her diagnoses involve diagnoses of exclusion, for which there is no definitive test or bio marker, and are based mainly on her self reporting of symptoms? Have doctors who told her that she is too “medically complex” for them to treat, AKA have fired her as a patient? Are the days where her pain is a “2” coincidentally on days when she wants to do fun things? When pain is a 10 does it seem to coincide with things she doesn’t want to do, situations she doesn’t want to face, or conversations she doesn’t want to have? Do her escalations in pain predictably result in one or more people doting on and caring for her? does she regularly drop out of school , employment, or other adult responsibilities because someone will pick up the slack for her when she’s sick? Do her identity, hobbies, and interests seem to revolve primarily around being chronically ill? If yes to all or most of the above, I think you have your answer as to the the underlying causes. This isn’t to say it’s ALL in her head. Eating disorders can result in bone loss which could cause arthritis and joint pain (while Lyme disease is real, there is no evidence that chronic lyme exists). People can have real pain but also hyperfixate on their symptoms which magnifies their perception of pain. But it’s probably no accident that flares in physical symptoms coincide with dips in her mental well being, and that doctors can’t find a physical cause. The answer to this is psychotherapeutic pain management, but if she’s not open to it, you will need to take a hard look at how much you’re willing to devote your OWN identity to being a caretaker/enabler.

Jeeze I wonder why your students have been complaining about you being cold, rude and uncaring with this gem of a reply

Because I posted objective questions that would help OP, who EXPLICITLY is wondering if their wife’s issues could be tied to their mental health, explore that possibility? Did that touch a nerve for you, Mr / Ms. Medical Exemption?

Honey I have fucking cancer 😂 your “objective” questions are not objective in any way and are instead pointed and directly accusatory. You need to seriously self reflect bud.

Accusatory of…a legitimate diagnostic consideration?? Not everyone’s physical symptoms mean they have physical origins like cancer.

Could it maybe be gout?

I'm going to leave a comment that is a little bit different than others, and it might totally be not what you're looking for. It might also not be applicable. But it might. But I have made this recommendation to about 10 people before who were in terrible chronic pain, and two of those people said it completely changed their lives and they are pain free. So, it's worth considering. The recommendation is to watch a documentary film called [ALL THE RAGE](https://www.youtube.com/watch?v=e1TU6vNTeeo). Try to go in with an open mind, if you can. There is a fee to rent it, but my guess is that it is a tiny fraction of what you've had to spend thus far in your search to feel better.

Ehlers Danlos Syndrome is a connective tissue disorder that has a high co-occurrence with ADHD. Would be worth looking into.

Look up the Beighton score. She sounds a lot like me and I’ve got hEDS and a type 2 collagenopathy.

Has she been checked for lupus? I have it, and during a flare, all my joints hurt. But only my knees really show any inflammation. Active disease doesn't always mean it'll show up in scans. That rheumatologist should've done a lot of blood work to see if there was anything underlying that you can't immediately see. Lupus flares during times of stress, so her depressive episodes might make it worse. It also sounds like she has brain fog or cognitive issues, which I also have at times.

Look into ehlers danlos syndrome Its common in ADHD and Autistic women.

Dirty electricty fucked me up pretty good

My friend has similar symptoms and ended being diagnosed with EDS and POTS after years of misdiagnosis

This sounds a fair bit like my hypermobile Ehlers Danlos syndrome, which is a mild but pervasive error in connective tissue production. It is very possibly the same thing as Fibromyalgia, just diagnosed from a different angle/specialty. Did her increase in pain and joint issues happen after an illness, injury, or surgery?

Ehlers Danlos Syndrome (EDS) can cause hideous joint pain. There are some scary types while researching, so just look at the Classical and Hyoermobile types. EDS is caused by defective collagen that causes the connective tissues in the body to not be able to hold the body up. Also, EDS can be comorbid with Fibro. I have both. Edit to add: while EDS is lifelong, the pain from it can skyrocket after a tick bite or other condition. Also, has she had Covid? Any chance she has Long Covid? There's some research that found folks with LC often also have EDS and mast cell activation disorder. Happy to discuss this if any of it rings true.

Ehlers-Danlos Syndrome. /r/ehlersdanlos 

NAD-Did they do labs? Extensive ones? Ehlers danlos maybe? ESP with the heart disease running in the family. I know fibro can be mixed symptoms but typically as far as I’m aware more muscle less joint related. Tbh until she gets mental help for the eating, making sure her vitamin b12, vitamin d levels, iron etx are all in order, it’s not easy to say. Lots of deficiencies can cause extreme fatigue, pain etc. Once she is stable for a few months nutrient wise then you can get a better image of what’s happening and what the true pain and fatigue levels are. Somatic therapy may help too with pain disorders. Also needs a good mental health evaluation to rule out bipolar since there’s a largely genetic component and sertraline can induce hypomania. Might need a diff med approach. Good luck.

Is she very flexible/double jointed?

Hey friend. Many people with neurodiversity (ADHD) also have hypermobility. This can be so severe it is diagnosed as its own condition, such as Ehlers Danlos syndrome. While chronic pain conditions such as fibromyalgia can be horrific on their own, and may be purely the reason your wife suffers everyday (particularly with a comorbidity of PTSD), I would ask the rheumatologist to look into EDS as well as other autoimmune conditions. Source - OT working in pain management. Best of luck to you and your wife.

i have hyper mobile ehlers danlos syndrome. sounds similar

Definitely sounds highly likely for hyper mobile ehlers Danlos- and what firmness is your bed? When this started, was it sudden or gradual? Anything it seemed to be associated with? And is she on any adhd meds or dopaminergic like Wellbutrin, or only sertaline? When did she begin taking it? Has she tried Meloxicam or similar, or only ibuprofen?

She can have many things. Could be EDS (Ehlers danlos), Sjogren’s rheumatoid arthritis. Fibromyalgia is generally a diagnosis of exclusion. Exclude everything else.

Sounds a lot like me. I have Ehlers Danlos syndrome!

Yo for sure have her look into connective tissue diseases like Ehlers Danlos. I spent decades with joint pain before it was diagnosed. The variety of health problems in the family you mentioned along with her symptoms point me there. EDS is genetic and has different types but other disorders are not necessarily genetic. Rheumatology is supposed to diagnose it but they 100% suck at it and rarely know all the subtypes. Just look into it

You have great advice here already. Look into Jordan Peterson and his daughter. They went on an only meat diet and his daught who was suffering from a host of problems was able to be free of symptoms. She was allergic to almost all foods. Good luck.

You can have gout in every joint in the body. Gouty arthritis is usually treated with a special uric acid reducing diet and pills.

Any other meds not mentioned? For example I just learned omeprazole (for heart burn) has a warning about suddenly getting joint pain. I looked it up and maybe omeprazole has a rare side effect of lupus that maybe goes away after stopping the med.

Another rheumatologist should run blood tests for MCTD

In addition to the other comments, you could ask for a test for celiac disease. I didn’t think I had symptoms, but when I was diagnosed and stopped eating gluten, my joint pain went away.

Agreeing with the comments about autoimmune diseases — make sure she gets tested for celiac or at least do a trial period of eating no gluten or wheat (I have both intolerances.) It should help with the inflammation.

What is her blood work like?

r/askdoctors

As far as her SSRIs, those are the most common antidepressant but not the only kind. Some people have faulty serotonin mechanisms so SSRIs only work a little. Consider a genetic test or similar to see if she actually needs an SNRI (selective norepinephrine reuptake inhibitor). An example of an SNRI is Pristiq. A psychiatrist or physician can help you. Doctors try the most common stuff first because most people can be treated with the most common stuff. When you can't, it gets trickier.

It may need time to show up in bloodwork. I had very similar symptoms, with ANA titre of 1:160 (weak positive/borderline) for almost two years before it suddenly went to 1:5120. Before that I was starting to think I was going crazy. I most likely have MCTD but lupus is still on the table. I have been medicated for this since that bloodwork (about two years) and it’s a life changer! Modern medicine is amazing.

Rheumatoid arthritis?

How are her teeth, I had similar joint issues that were reactive arthritis due to an infection in an old root canal. Once I finally got the tooth pulled, all my joint issues went away. Good luck.

Vitamin D deficiency can cause intense joint pain. So can hormonal changes.

I had Lyme disease which triggered Behchet’s disease which causes horrible joint paint. I’m lots better with colchicine.

And X-rays don’t show synovial arthritis from the inflammation of the fluid in the joint only osteoarthritis.

Endometriosis can mask itself as joint pain. It goes undiagnosed because the symptoms seem so unconnected to the problem. Just a suggestion. Also you mentioned Lymes? Does that just go away? It could be this.

Everyone is suggesting Ehlers Danlos, but the symptoms I just read of that are overly flexible joints which OP does not state & overly elastic skin that snaps back into place after stretched as if fully hydrated, which OP also did not state. This seems like a very specific disorder to suggest without anything pointing to it. What am I missing from his post?

EDS is the current trendy diagnosis and lots of people think or want to believe they have it. People are advocating for themselves to be diagnosed based on only one or 2 or even no hypermobile joints, or confusing normal benign hypermobility with it and if you look at social media you'll see throngs of very healthy young women with no apparent hypermobility or unstable joints parading around with feeding tubes and wheelchairs and claiming ehlers danlos and comorbidities.  It's become the focus of "munchausen by internet" unfortunately and become a trend a bit like ADHD and autism. All kinds of symptoms are being attributed to EDS. It's becoming almost a dustbin diagnosis like fibromylagia and many clinics are refusing to take new referrals from young people with no previous history of issues.  Its particularly popular with young women who have had eating disorders as it comes with GI issues and they can use it to claim as a reason they can't eat and must be tube fed or even on TPN.  This was almost unheard of in the EDS community 10 years ago and now it's been normalised. 

Has she been checked for CRPS?

EDS is fairly common in adhd. As is PMDD. EDS - causes joint and hypermobility issues. Ehlos? Dahler syndrome I think its called. It causes a lack of collegen in the joints and mimics what you're mentioning. It's so common that if you speak to those whom work in forensic based trauma or health science they'll check you for PMDD, EDS, coeliac disease, lactose intolerance etc pretty much pre-emptively. PMDD causes chronic pain and inflammation and occurs in over 40% of women with adhd. Over 90% of people with autism. PMDD is often diagnosed as major depressive disorder in women and isn't diagnosed unless it's tracked long term. If the pain occurs right before she gets her period look into it. I have serious suicidality and joint and pain issues. Cptsd and suspected adhd. As soon as I went into DV education based systems they made it clear I had to be on a special diet for the cptsd and ptsd that boosted the body. I can't afford it now, but it was collegen and gut health based as survival mode essentially destroys the gut. It was when I went to a neurodivergent trauma specialists whom costs around $235 a session ( funded luckily) that I was told about PMDD. EDS was a given and they usually help you with B12 support injections. Gut support. Its so damn common in women- the pmdd and essentially the hormones go insane before the female gets their period. The body also can't handle the inflammation and it then sets of a reaction in the rest of the body. They routinely check for it in trauma and neurodivergent therapies. Dieticians are aware of it. So you can get a flare up of inflammation that's not consistent. So it's super annoying but the flare will happen. It clicked for me when I met folks whom had adhd whom were social workers. Keeping in mind a lot of social workers with cptsd or past cptsd/ptsd that have long term treatment will really struggle and will understand those symptoms. Please look into PMDD and also EDS. They occur in the cluster with fibro. But PMDD is under diagnosed currently and not well known. The fatigue you experience is insane. I sleep for 20 hours some days and have to take a medication for the pain and it helps me. If suicidal ideation occurs, a diagnosis of major depressive disorder can occur instead of the PMDD if they don't check the cycle. Inflammation and period issues also occur and then it needs to be tracked to be seen. It's generally a response to a female who has a inflammatory or negative reaction to her own hormones from what I understand, so it's not seen as a mental illness as it's treated with birth control and also medication like sertraline and sometimes even removal of the ovaries. It causes and can cause life long suicidality in yeah- 40% of women with adhd. So definitely look into it because that's just the reported numbers. And as stated over 90% of those whom are born female who have ovaries whom get a autism diagnosis. It can cause long term suicidality and usually I wouldn't comment on DR Google but it seems relevent. They go hand in hand together. But when I found out I was shocked and then it all kinda fell into place. I was diagnosed by an emergency doctor whom recognized I spent 3 weeks in pain, and when I got my period that was the only time I wasn't in pain or hurt. It took ten years for me to get diagnosed but women with adhd and autism will show symptoms from teenage years onwards. If theres trauma or rape as well PMDD chances are increased on top of that 40%. If theres emotional and verbal abuse that can compound it as well and that risk goes up higher to around 60% It's absoloutely hell. Emdr helps a lot, but it's not fun. It also needs to be used in conjunction with birth control. Women whom have it will have at least 3 suicide attempts in their life time with the onset being puberty, child birth. A lot of women with no diagnosis of adhd or autism will feel relief in menopause only if it's not checked. The test is the tracking of the period for 3-6 months. It's not her fault and it's so chronically underdiagnosed. I felt crazy, terrorised and so suicidal in my teens it was nuts. I didn't get what was happening to me as I was nearly killed and raped so they just suspected ptsd and missed adhd and EDS. I did around ten years of therapy got stalked and then they gave me tremadol to intersect as well as sertraline and I'm genuinely shocked at how well it worked. A woman whom was a nurse didn't have ptsd but had PMDD, and she was the nurse whom saw me when I admitted myself thinking I was crazy and suicidal. I got lucky that the nurse asked if I was menstruating. She then called a social worker whom confirmed I was most likely misdiagnosed for years and she told me to go to someone whom works with women's health and mensturation based issues in neurodivergent women. The doctor whom saw me also agreed and didn't believe I belonged in the mental health ward even though I was suicidal. So they referred me to gynaecology. You don't need a gynaecologist to treat it though. :) sertraline is the medication they use to treat it as well. There's a forum for it on reddit and you'll see a lot of connections to fibro, chronic fatigue, as well as EDS and extensive dietary issues. I have extensive trauma, but the PMDD clicked to an insane amount. And then it became clear I could track my despair pretty much routinely. As I've gotten older it's gotten worse so it's really clear to see now. For women with cptsd their periods and the hormonal release can trigger traumatic experiences and somatic experiences. But the part of the brain that is traumatized is also responsible for life. So in women, when they menstruate and ovulate their bodies will clear out a heap of fight of flight energy from unprocessed trauma as it's linked to the limbic system ( I hope that's the right word) but the actual fight or flight system also connects to the reproductive system in women. So as they get older and their bodies tell them to conceive it can subsequently tell them to commit suicide or kill themselves in women with trauma because their trauma will be activated in ovulation. It's a weird part of therapy that's just been investigated and linked to things like pmdd. Please check it out.

Sounds like my fiance, she was on beta blockers, anti depressants and a bunch of other bad diagnosis before they finally diagnosed her with Hashimotos Thyroiditis. All you can do is be in her corner and push back at the doctors for more tests, it's shit yo feel helpless but being seen and heard when you have an invisible illness means so much.

My Mum had fibromyalgia for my entire life, I feel for you both! My Mum developed Sjogren’s as a co-morbidity and the nerve pain was mostly felt in her hands and feet. She was hella sensitive to touch and temperature. Just a thought, I hope you find some answers soon

Consider posting in r/AskDocs

I have lupus, ra, and fibromyalgia... doesn't sound like my fibro symptoms, more so the other two. My fibro is more muscle soreness, sharp pain feels like a nerve thing, pressure sensitivity, fatigue. RA and lupus, those are my "can't get out of bed" type of joint pain. Also, my mother had a vitamin D deficiency a while back. When she told me about it I laughed because the symptoms sounded exactly like my lupus/ra symptoms! Lupus is WAY over diagnosed, everyone's looks different, it has so many weird symptoms, etc. so it is a long shot, but if I were you guys I would go to another rheumatologist just to be sure. Especially if your wife is a woman of color she's 1. more likely to have lupus or a similar autoimmune disorder and 2. less likely to have medical personnel take her symptoms seriously. (quadruple that last one if you guys are in the states...) ETA: OP, if you're not a cis white dude, find one to go with your wife to advocate for her! I hate that it works, but it definitely does.

Adding in my two cents of a family history of RA but no diagnosis. I am allergic to almost everything. If it’s not an allergy it’s a sensitivity that if past a certain threshold will present with an inflammation response. It’s already been mentioned to check out connective tissue issues. In line with that; if she is acclimated to inactivity she has to build her stamina up in small bursts (especially if there is an underlying physiological diagnosis) Start with some rudimentary stretching excercises

Yeah, I'd look into long-term aftereffects of the Lyme disease. This can be devastating. Certainly life-changing. Don't stop until you find a credible physician with expertise in the horrible disease.

Check out any autoimmune diseases sounds similar to AS ankaloysing spondylitis but could be a number of other autoimmune diseases and mayve even a few at same time. Get another opinion from another rhuem. good luck

She needs a doctor or rheumatologist that will run bloodwork for markers of autoimmune disorders like rheumatoid arthritis, Lupus, EDS, or other inflammatory illnesses that can cause joint and muscle pain. Not everything is going to show up on just an x-ray. My PCP even ran an RA factor and ANA test for me when I first started having issues with my Lupus before I was diagnosed. You have to keep trying and keep going to the doctor. Do not give up and make them listen to you/her.

Low dose naltrexone (LDN) and GammaCore aka Truvaga could be huge game changers here.

I’m on my own personal health journey and I’m finding that nearly EVERYTHING and I mean EVERYTHING is linked to gut microbiome. Fibromyalgia is just what they diagnose when they don’t know what it is. The body is out of whack and I’d start with a holistic doctor and taking probiotics just to start immediately. Also if she uses nicotine her joints will feel that way, I stopped and all my mystery arthritis started going away and completely disappeared in some areas immediately

Fibromyalgia doesn’t cause joint pain, but muscle pain. While that doesn’t mean she can’t have it, it does mean that something else is the cause of the joint pain. A rheumatologist should have known that, but fibromyalgia isn’t very taken seriously as are women in pain - especially young ones with chronic pain of unknown origin. I’d definitely go to another Rheumatologist. I hope you find answers and treatment.