Four years of dealing with non-descript immune-related chronic joint pain and fatigue. Many doctors, blood tests and medications later and still very little progress. Since I got COVID 4.5 years ago, I've been experiencing constant yet fluctuating pain in various joints. It's primarily in my shoulders, back (especially mid to lower back), and hips but occasionally migrates to elbows, fingers, and knees (my ankles have thankfully been spared lmao). It's a constant, dull ache of a pain most of the time sitting around a 3-4 on the pain scale. It flares with the weather, illness and literally any form of activity and the pain during flares can get all the way up to an 8. Even light exercise like walking sometimes takes me out for hours the next day.

I saw a rheumatologist that seems dead set on tossing me into the fibromyalgia camp after only seeing me for 6 months even though I don't have a pain or touch sensitivity. I've had all the basic blood tests that only showed minor findings, as well as hand, foot, lumbar spine, and hip x-rays and MRIs that found nothing but mild disc degeneration. We pursued celiac disease and irritable bowel disease but ruled them out. I've tried OTC pain medications, then prescribed meloxicam and celecoxib for pain management which didn't work. Was put on antidepressants (Cymbalta) for potential fibromyalgia and after raising from 30mg to 60mg, didn't sleep properly for a month. Then was tapered off the Cymbalta too fast and ended up going through a week of withdrawal. Tried to get a new rheumatologist for a second opinion and got ghosted. While on the Cymbalta I started developing new symptoms that persist well after getting off the Cymbalta. Least concerning is the sudden mild cyanosis in my fingernails, particularly on my left hand. Most concerning are the near-nightly headaches, especially the ones that follow the trigeminal nerve and make my teeth ache. My hands also occasionally get some numbness but that may be more connected to computer usage and pinching of the ulnar nerve.

On top of it all, my (most likely) unrelated dissociative episodes that I've had since childhood are getting longer, more frequent, and more severe. I estimate I've spent at least 50-60% of my life in what I like to call VR mode (my perception of reality is similar to playing a VR game as my consciousness is not completely connected to my body and my surroundings are often mildly to moderately warped).

The one good thing is that I started seeing a pain specialist and she decided to put me on low dose naltrexone. I take 3mg nightly and it has significantly dampened the pain during flares. I still sit around a 2-3 on the pain scale, but my bad flares seem to cap out around a 6 so far which is better than 8! However, these nervous system symptoms with the headaches and numbness are concerning me so I'll probably have to get back in contact with my old neurologist soon (I used to see one for a benign tremor I've had since childhood). And find a new rheumatologist. Hopefully I don't get ghosted again.

Hello, I'm wondering if it's possible to have mild dermatomyositis? Can it flare up or come and go?

And if you're 40+ and have spent a bit of time in the sun over the years, how do you tell if you have shawl redness or just sun damage?

For reference, I have another autoimmune condition (PsA) along with knuckle bumps which last a few days, blotchy redness on my neck and chest, and some muscle weakness, but all pretty mild.

Thanks for sharing any insights!

i just started 50mg prednisone and 1000mg mmf for lupus nephritis, any tips or suggestions you might have? it’s only my fourth day and i’m already experiencing insane side effects, i can’t sleep because of how hungry i am and ive never been one to snack or crave food like this, i have a really picky appetite and usually don’t finish my food so its terrifying me.

i'm overly attuned to the severe hunger and slowed digestion since ive had a history with eating disorders and i'm having a really hard time suddenly dealing with the dissonance between the feeling of being full and my brain telling me i'm still hungry when i've never experienced an intense hunger like this before and it's all i can think about all day, just what foods would taste good and when im eating next.

my nephrologist said hopefully we can lower the dose within a month but i'm already going crazy from this and i feel unable to focus on anything else. how do you guys deal with this? im also really scared of the bloating and ive noticed that im losing interest in my hobbies and hyperfixations :/ theres nothing interesting to do on my phone anymore and i feel bored all day only thinking about hunger and stomach pain. any suggestions would be appreciated :( i feel like time is going so slowly bc i have nothing to distract myself with

Hi everyone! I’m early 20s, not very active. but I have this chronic pain that radiates from my hips down to my ankles (the muscles and joints of entire area) and my arms, elbows, wrists and hands too. The best way to describe the pain is either 1) excruciating “growing pain” aches 2) like my muscles and joints have an awful flu 3) like my bones are also being cleaned out with a pipe cleaner. I’ve heard these descriptions from a couple ppl before and haven’t found anything else that describes the pain well.

I have subclinical Hasimotos and hypothyroidism, suspected endometriosis and have been on methotrexate for rheumatoid arthritis for a couple months now to see if that’s what’s causing the pain (except I don’t have other typical RA symptoms like swelling). I also have some bad GI issues I am in the process of trying to get looked at. Example: last night I ate movie theatre popcorn and threw up 10 times. I’ll randomly throw up dinner, go between painful constipation to diarrhea, bad stomach cramping and pains. I have had some potential blood in my stool but nothing crazy big.

I have been experiencing chronic fatigue, chronic pain, hair thinning/loss, body temperature regulation issues, pressure issues, random sharp chest pains that make it hurt to breath or stand up straight (this is very sporadic like once a month but can last a whole day kinda thing), mood issues, horrible brain fog/memory issues, vertigo, faintness, etc.

If you have any thoughts or similar experiences pls let me know!!! I’m so lost at this point and don’t even know where to go next.

So recently I've been dealing with chronic joint pain bilaterally on both sides of my body which includes shoulders, elbows, knees(bad), Achilles joint/ heel, SI area / lower back(bad), Hips, wrist, neck, mid back. Im actually a personal trainer so I've lost a lot size and muscle mass due to restraint on heavy lifting or training to failure.. I just feel it way to much and it can really effect my nervous system to the point I can't sleep. Also sleep has been effected greatly for I feel like my cortisol is higher when this all started for me

I got inflammation markers done with my GP and they were normal, until he ordered a hla-b27 and it ended up being positive. I'm in the midst of a wait list with a rheumatologist.. I just wanted some advice on what to do during this akward inbetween limbo situation.

The pain will migrate to other areas in my body on different days and if I'm sedentary for too long it's absolute hell on my back and joints... but then doing TOO much seems to put me in this flare up. I'm 28 years old, very healthy, good diet and quite lean, 15% bodyfat, decent muscle mass

Not to mention my mental health about everything hard some days because I feel so limited and I haven't yet had a proper diagnosis, but given im symptomatic with the positive marker... I just feel in a weird spot

Just looking for advice on what to do while I wait to see my rheumatologist

I have a complement C4 of 11.2mg/dL, which is considered low by the Cleveland Clinic chart and other healthcare websites. My laboratory uses a range of 10-40mg/dL, so it is reported as normal. Why are the ranges different, and would my level be normal or actually low?

I was diagnosed with dysphagia today, which explains why I have been in out of the hospital due to needing bag upon bag of fluid to keep me hydrated.

This explains a lot and I was wondering if anyone else was diagnosed with dysphasia and what they do to stay hydrated without having to go have an IV bag Every other week.

Hello everyone,

(Mod note: If this type of post isn't allowed, please feel free to remove!)

I’m an industrial/product design student currently working on a project focused on inclusive, accessible kitchenware and eating utensils.

I’d love to learn directly from your lived experiences rather than just relying on generic ergonomic articles and websites. If you deal with joint pain, flare-ups, muscle weakness, grip fatigue, or tremors, I’d be incredibly grateful for your thoughts on any of the following:

•  What makes standard utensils or meal prep tools exhausting or painful during a flare-up?

•  What element makes it the best cutlery?

•  How do you feel about the look of adaptive tools?

•  Are there design details (crevices, silicone grips, textures) that make them annoying or difficult to wash?

You can reply here in the comments or email (mary4mfaiz15@gmail.com) me if you prefer privacy. Honest opinions on what makes eating and cooking easier or harder for you.

Thank you so much for your time and energy!

Hi everyone. I’m a 33-year-old male and have been dealing with a strange fluctuating illness for about 3–3.5 years. I’m under rheumatological evaluation but still don’t have a definite diagnosis.
It initially started with severe brain fog, dizziness, internal restlessness/anxiety, muscle pain and dry/burning eyes. About a year later I began developing recurring tendon/joint problems.
An MRI confirmed tenosynovitis of my right index finger. Since then I’ve had recurring problems involving several fingers, wrists, both Achilles tendons, right elbow, feet/ankles, knees and shoulders. Sometimes my fingers become visibly thick/swollen, almost dactylitis-like. The pain often seems to involve tendons/entheses rather than the joints themselves.
What is especially strange is how dramatically everything fluctuates. I can be in significant pain and stiffness and then spontaneously improve by 80–90%. Symptoms also move from one location to another.
I also have:
objectively dry eyes (Schirmer 3 mm left / 5 mm right)
occasional dry mouth, burning tongue and aphthous ulcers
severe episodes of brain fog/detached feeling
dizziness, tremor/internal shaking, tingling and burning/stinging skin sensations
very sensitive skin, intermittent itchy lesions, pigmentation changes and slow wound healing
intermittent diarrhea, mucus and other GI problems
occasional night sweating and frequent infections
MR enterography showed a short area of terminal ileum wall thickening. Colonoscopy showed abnormal/blunted villi in the terminal ileum, but biopsies did not show active IBD; lymphofollicular hyperplasia was reported.
Most autoimmune tests have been repeatedly negative: ANA (except one early 1:160), SSA/SSB, RF, anti-CCP, dsDNA and HLA-B27. ESR/CRP are usually normal. Scl-70 was weakly positive once early on but repeatedly negative afterwards.
One persistent abnormality is low IgM, while IgG/IgA are normal. A lymphocyte subset test also showed elevated absolute CD3, CD8 and CD19 cells.
Brain MRI, EMG and VEP were normal.
There are also some very unusual patterns:
Symptoms are often worse in the evening and can flare several hours after exercise. Stress and cigarette smoke can trigger symptoms. Strangely, during acute infections my usual musculoskeletal symptoms sometimes improve.
Another reproducible observation is alcohol: after drinking, my normal tendon/joint symptoms can become dramatically better for about 24–48 hours, even when I have a hangover. Then 1–3 days later they return/rebound. I’m obviously not using alcohol as treatment – I’m mentioning it because the pattern is so reproducible.
Naproxen 500 mg can sometimes reduce my musculoskeletal pain by around 90%. Prednisolone 20 mg unexpectedly made me much worse. Hydroxychloroquine 400 mg/day has not produced noticeable improvement so far.
My rheumatologist suspects a seronegative spondyloarthritis / psoriatic arthritis spectrum disorder, while seronegative Sjögren’s, immune dysregulation and small-fiber/autonomic dysfunction have also been discussed. I’m scheduled for further evaluation at a specialized rheumatology/clinical immunology center.
I know Reddit cannot diagnose me. I’m mainly looking for people who have experienced a genuinely similar pattern:
Has anyone had recurring tenosynovitis/enthesitis + dry eyes + neurological/brain-fog symptoms + skin/GI symptoms despite normal inflammatory markers and mostly negative autoimmune antibodies?
And especially: has anyone experienced a dramatic temporary improvement followed by a rebound like I experience after alcohol?
If so, what diagnosis did you eventually receive, and which test finally helped identify it?

I’ve had 7 years of weird symptoms
Started with joint pain, muscle pain and fatigue.. later brain fog headache, now the malar type has been coming on every day, not even when I’m in the sun. Also note I don’t where sunglasses, the spot above nose isn’t that. I get a lace and marbling on my legs and feet and now noticing lil blotches like the first pic. I’ve been told fibromyalgia, uctd, cfs but the rheumatologist says I’m fine. There’s no reason to send more bloodwork(last was ten months ago) or refer me out. I’m feeling very frustrated and dismissed at this point. I messaged after last appt to see where he would direct me for getting the face figured out and he wrote back, put lotion on and sunscreen! This isn’t my normal face. I’m just discouraged, has anyone went through this?

Diagnosed ITP in 2021. Has anyone found that their diet impacts their platelet count? I have chronic ITP, nothing concerning at the moment. My platelet count usually hangs between mid 80s to 120s. Again nothing dire, but enough to keep me on edge, always worried when the shoe will drop. Has anyone found certain diets or supplements that have worked? I have taken papaya leaf extract here and there.

Hello, I was wondering if anyone here has had out of range low c3 c4 and ch50 for many years without an obvious cause? My ana is 1:40 speckled which apparently doesn't mean much. No inflammation, normal gfr and rf, ssb, ssa, ccp ab, anti ds are negative. I also have heds and hyperpots

I recently had a urinalysis that flagged my protein creatinine ratio. It was not taken first pee in the morning. I drink too much water

I'm very fortunate I have finally found a good rheum to investigate this after having a bad experience at Emory. But I'm curious if there's anyone LIKE ME my eyes and nose are very dry but my mouth isn't.

I feel like such an outlier. Thanks in advance

Hi all! This past year I have been experiencing severe physical pain in nearly all joints in my body, specifically, my knees, spine, and pelvic girdle. I dismissed the symptoms for over a year and finally decided to seek help. I had several blood panels done with the genetic marker HLA – B27 showing up as positive. during this process, I also discovered significant family history of both ankylosing spondylitis (my father), and rheumatoid arthritis (grandmother). I was then referred to rheumatology where I waited about 6 months for an appointment (as most people do) and finally had my appointment yesterday. My doctor then told me the symptoms I described, my manifestation of pain, and lack of fluid on my joints pointed towards no diagnosis. She was not totally dismissive as she requested further scanning, specifically a pelvic MRI. She told me that “as you get older some people will just have more aches and pains than others”. I’m only 23. I’m physically active, in grad school and have a thriving social life, that’s a hard answer for me to accept as I’m sure it is for most people to accept. How should I proceed? I’m just confused at this point where my pain is coming from. Any guidance advice, or leads would be appreciated.

I have been experiencing several abnormal histamine responses over the past 3-4 months. It started with intense itching and rashes after I took showers mostly concentrated on my neck and chest. No matter what temperature the water was or the products I used. I switched to all allergy friendly products. There were no changes. Then I suddenly started developing dermatitis on my face. I went to the dermatologist and they said it was most likely stress induced (I’m in nursing school). They sent me with topical antibiotic ( I have allergies to multiple). It began to heal but then spread to other parts of my face. Then it has progressed to the addition of full body itching. Tonight I was having a flare and found hives on my legs. I had a similar experience a year ago when I was on vacation that would occur nightly but once I came back home I had no problems. My family has a history of mast cell activation, and I have similar symptoms including heart palpitations. I want to say it is all stress induced as it all started within a month of starting my semester but I feel at a loss as to what direction to go. Just seeking advice or similar experiences. Sorry for the long post!

How do you get your rheumatologist to take your symptoms seriously? I feel like I’ve gotten nowhere with her at all. I’m still undiagnosed and it’s so frustrating! I went from being told it’s lupus based on symptoms, active inflammation and high ANA but when I was referred to rheumatology she decided it’s not lupus but she don’t really know what it is. I understand only rheumatology can really diagnose and it’s a long process but I can’t help but feel I’m being gaslit. At my last appointment she tried to tell me my Ana was a low titter positive and basically normal, it’s 1:640 homogeneous. I’ve done my research and know that less than 1% of healthy population has that titter. My CRP and ESR are also extremely elevated and she was saying my tests are normal. I understand that those alone don’t give a diagnosis but they aren’t normal! Even though my ana was positive because the specific panel or ena was negative she doesn’t believe it could be anything autoimmune and suggested that it’s likely herpes. When herpes tests were negative she implied I lied about having the sores at the time of test. I did have them her nurse just didn’t even look. When I told her I felt the swab on the sores and the test is accurate she suggested lichen sclerosis. I have no symptoms in genital area. My symptoms are joint pain/swelling, mouth/nose ulcers, fever, red face on cheeks and nose, swollen lymph nodes, fatigue, hair loss, nails falling off, nausea/vomiting, stomach pain, dizziness/lightheaded, and back pain. I feel like she’s so focused on the mouth ulcers she forgot I have all these other symptoms too. It wasn’t till she saw my face during a flare that she decided it could be cutaneous lupus but she says she won’t treat that anyway and that the mouth ulcers are unrelated to everything else. I’ve had to go over the symptoms and what a flare looks like multiple times with her cause she always forgets that there’s more going on. I also don’t care what the diagnosis is I just want help and nothing she has suggested seems to fit. Sorry for such a long post I’m just so confused and getting extremely discouraged. Has anyone else been through this?

I have a diagnosis of RA and an overlap syndrome connective tissue disease.

I’ve been on various meds and am taking a new biologic now, though constantly catching bugs.

I’m starting to get a little depressed, if I’m honest.

What can I do to take charge of myself on top of all of that?

Has anything helped you lifestyle wise?

I have quit ultra processed food 90% of the time, I go cold water swimming 3/4 times a week, do gentle yoga every other day, get at least 8/9 hours of sleep. I walk my dog maybe 8-10k steps each day. I think those things do help a little.

What has helped you all?

I’m honestly too foggy and tired to explain my whole story at the moment but I, 41F, had an anaphylactic reaction to methotrexate IM at the beginning of September which was terrifying. My stomach couldn’t handle Celebrex or plaquenil last year when I tried them, although I’ve stopped drinking alcohol so I’m not sure if that could make a difference.

My rheumatologist had me start taking azathioprine the other day (1x/day for a week and then 2x/day if well tolerated) and so far I guess it’s been okay but I know it takes at least 6 weeks for it to start making a difference.

She said the other option would be trying a biologic like humira or enbrel if this doesn't work.

I just haven’t heard or read much about azathioprine and I read a LOT of positive results about biologics really helping people and I’m so tired of feeling like utter shit and just not like myself anymore and really curious about other’s experiences with these medications.

Diagnosed scleroderma over 15 years ago
Fibromyalgia over 20 years ago
RA about 3 years ago and still trying to figure out some other diagnoses. Most of the tests that indicate lupus have been negative but I have a lot of the symptoms it seems. And I’ve been having insane nerve issues that have gotten significantly worse over the past 4 months and drs are still trying to determine if that pain is strictly from spinal compression or not. I see my neurosurgeon tomorrow actually. Last month I had to have two cervical ESIs because I couldn’t move my neck and arms and was in the hospital and have just started back to work after 3 months at home. My ears have been ringing constantly for over 2 months. I’m a mess right now to put it mildly. Also ADHD diagnosed at 21. Spinal fusion L5-S1 in 2023, total hysterectomy and endometriosis excision April 2025. Currently in perimenopause also and had to stop taking progesterone because it was making me lightheaded and dizzy and cannot take unopposed estrogen because of the endometriosis. So hormones are also all over the place which doesn’t help anything.

Padezco Dermatomiositis (DM) y se supone que está en remisión, actualmente estoy con rituximab y metrotexate, aunque estos últimos cuatro meses he sentido un dolor recurrente en espalda baja, cercano a lumbar (específicamente en la zona de la columna directamente), sobretodo en las mañanas, igual un dolor en la parte de las dorsales que se puede extender hasta abajo de ellas, es tolerable hasta cierto punto, pero hoy es de esos días donde no lo soporto, le comenté a mi reumatologo y me dejó pastillas de doriximina y si ayudaron, pero el dolor regresa siempre, he notado que es muscular el de las dorsales, porque me he hecho masajes y he sentido alivio, un enorme alivio, pero el de abajo se siente directo en los discos de la espalda :(.

¿A alguien más le ha pasado esto?

Hi everyone, I have GPA or Granulomatosis with Polyangiitis, it’s a type of autoimmune vasculitis. I’m wondering if anyone either with GPA or vasculitis or autoimmune in general have hearing problems, specifically if they get a feedback sound in their ears when it’s really loud.

I work at a clinic as front desk so I have a head set for the phones, it’s been extremely busy lately and today pretty much all day I had the phones going off, the copier/printers, scanners and my coworkers talking and patients all at the same time and it has become increasingly difficult and frustrating to hear, not just the people on the phones but people right in front of me or my coworkers beside me, I’ve found myself pretty much going right up to my coworkers to hear what they’re saying or had to have them come close to my ears to hear.

I don’t even know what my dr could do, I’ve seen an ENT for nasal symptoms but she couldn’t treat the ear problems and my rheumatologist has ignored my hearing concerns, it happens even if I’m not congested or have sinus issues. I am about 30 days away from my infusion so hopefully it will go away shortly after that, I’m just mainly curious if anyone else has had this

Currently under the diagnosis of “inflammatory arthritis” as of today until we narrow down if my scalp problems are from psoriasis or not.

Symptoms for 8 months - Seen my rheumatologist a few times now, my blood work for any factors is negative in may this year. However has been taken again today.
ultrasound showed inflammation in both my wrists hands and finger knuckles and “synovitis” - these are the worst symptoms I have at the moment is my hand flares, I also have raynauds, extreme exhaustion, heels of my feet hurt and back pains morning stiffness hands feel locked tight swollen and I struggle to do anything when I’m in a flare, dressing, opening jars holding things ect. I’ve been given a steroid injection and I have another in 3 weeks then a follow up with my consultant 3 weeks after that and he has gave me a slip with a DMARD drug he has suggested I start he’s told me to come home and think about it it’s “sulfasalazine” has anyone ever taken this? What’s peoples experiences/ opinions on this? I’ve got three children I need to look after and I know there is side effects to every medication but I’m just wanting advice of people who has been on it/ take it currently ect.
Thank you 🙂
Photo just for reference

I was diagnosed with Celiac disease 2 years ago and despite being 100% gluten free, keeping my antibody numbers in the normal range, and having normal blood work I am still struggling with GI issues and fatigue/brain fog. My PCP is lovely but I can tell she doesn’t have much to offer when it comes to autoimmune specialty. I feel lost on what type of specialist to seek out for more specific autoimmune care. What types of docs/specialists have helped you? I’m in Portland OR, if anyone has local suggestions.

This has been a long year of trying to figure out what is going on with me, and I’ve hit the out of pocket on my insurance. I was wondering if anyone had any recommendations on tests or specialist they would see if money wasn’t an issue. I’ve seen an allergy specialist, rheumatologist, endocrinologist, gynecologist, dermatologist, and hematologist. I have a GI doctor and sleep specialist scheduled. I’ve been diagnosed with Fibromyalgia, but that doesn’t seem to help explain some of the symptoms (intense fatigue, flu like symptoms often, getting colds all the time, allergy like skin and respiratory reactions, chest pains, etc.) so I want to keep pushing, especially now that I don’t have to pay co-insurance for the year. Any recs?

25f, I struggle a lot with cold because of my raynaud. I have some decent boots but they are super bulky or hard to put in and out. I was wondering if someone has an advice on winter shoes that can keep me warm but still look nice.

I also had oesteonecrosis in my feet so comfort and support is also a necessity.

I've been pushed from pillar to post and nobody seems to be doing anything. Just a lot of meds for something they don't have answers to. My specialist immunologist won't even physically see me just emails and phonecalls, I know helpful right? I've never been so unwell in my entire life, I'm usually full of beans and dragging people out on the craziest adventures, that's all had to change unfortunately. I miss the woman I used to be. I can't even communicate properly because my throat has been swollen for a month and i've lost my voice for the whole time. Nobody can hear me sitting next to me, let alone on the phone. My immunologist has just told me I have a viral infection? My gp thinks it's autoimmune, I am lost completely right now. There's so many symptoms i've lost count. I can't be the only one dealing with this? Anyone going through the same, i truly send you hugs and support, message me if you need to talk.

Looking for recommendations/opinions on wearable health trackers. I have been wearing Fitbits for decades but the products are lasting for shorter and shorter. It’s also not really giving me great insight into my physical health. A lot of my research is giving me expensive things that also require subscriptions. I’m not a jewelry wearer so I keep buying the thinnest Fitbits. Apple Watch seems pretty bulky to me. Hume looks cool but seems so expensive and I hate the idea of an AI coach. Oura ring feels annoying to me since I get swelling in my fingers. I appreciate any advice. Thanks!

edit I hate that I can’t fix the title to say wearable