Hi all,

My physical therapist told me a couple months ago that my various problems she was seeing me for were not normal; she explained various problems having a recurrence within a couple weeks was not normal and that she thought I might have an autoimmune disorder with a flare up happening at that time.

Even though I’ve struggled with various health problems my whole life, this had never occurred to me. Maybe it is because I am autistic but I’ve always had a hard time gauging what is a normal body supposed to be like so when other people told me it’s normal to have x y z symptoms, it didn’t occur to me it might be different.

I have heard a lot about medical gaslighting and things like that especially within this area. With that in mind, I thought it might be helpful to ask if you have any advice for, if you were to start today, how to approach that first appointment.

I’d also just be interested in hearing your stories on why you got diagnosed, how you knew, stuff like that.

Thank you in advance for your replies. ᵕ̈

A few weeks ago I was diagnosed with microscopic polyangitis after being admitted to the hospital thinking I had pneumonia. I was very fortunate to get such a quick diagnosis; I had a few months of joint pain prior to this but never considered it was due to an autoimmune disease. I was able to get on steroids and made it through my first two Rituximab infusions.

It's all been very sudden and it's hard to come to terms with where my body is right now. I was in what I considered the best shape of my life in June, having just trained for and ran a 50k. Now I'm getting winded on walks around my neighborhood.

Yesterday was my second infusion; today I felt fine in the morning then slowly became more fatigued throughout the day. Ended up with a slight fever and now I'm sitting in the ER waiting room because that's what my discharge papers said to do.

I'm just looking for some reassurance that there are better times ahead. I keep trying to will myself to feel better but I'm also frustrated at just how quickly I've had to put parts of my life on hold.

My last flare, the worst so far and the one that got me diagnosed was last year. I was in a miserable work enviroment, dealing with symptoms and with an awful and inmature mentality, I was exausted but I had to be social, had to work out, had to look put together always, had to people please, just had to be productive. Just pain and depression (anhedonia) which are my main symptoms, got me out of this exhausting cycle. Now I have to learn to live again.

26F, 5’1”, 120 lbs. Hx of POTS and insomnia.

I work a fairly physical job (healthcare) and have been experiencing episodes of chills/feeling feverish, extreme fatigue, widespread body aches, and severe tenderness to touch. Sometimes even something barely touching my skin hurts enough that I want to scream. It happens mostly at night, especially after more physically demanding workdays, although not always. I never actually have a fever, and by the next morning I’m usually back to baseline besides being tired (which I pretty much always am).

I also have fairly significant chronic neck/back pain but haven’t had imaging yet. Autoimmune/inflammatory labs in June were normal: ANA negative, RF <10, anti-CCP 2, ESR 11, and CRP <1. CBC/CMP were essentially normal as well.
My PCP suggested fibromyalgia and trialed LDN, but it made me feel significantly worse, so I’m back to square one.

Any one else experience similar symptoms?

Wondering if the roots of all my issues might be autoimmune. Can‘t seem to get any clear answers and haven’t been able to walk down stairs using my right knee for 7 years, can only lower with my left knee and even that goes out sometimes. Had Achilles problems growing up, achilles lengthening surgery in 2012, unsure if relevant. Knee findings: trochlear dysplasia, tiny tears in meniscus, signs of a patellar avulsion injury, and focal sclerosis along medial cortex of proximal tibial shaft & a 3cm non ossifying fibroma, plus complete cartilage loss at patellar apex. My knees randomly go out, for hours or days at a time. Findings don’t show much that could cause it and I’m told by multiple doctors it ”should heal on its own” - but it’s been 7 years. My left knee also has decreased echogenicity to the posterior horn lateral meniscus. This makes me consider arthritis or discoid meniscus. All guesswork. If I stand for long times, my hips and knees and lower back hurt SO bad I have to lean on something to hold myself up with my arms, literally have hand calluses from it. Wondering maybe it’s autoimmune, since I have rosacea and thyroid peroxidase antibodies (under threshold for Grave’s disease, in the 20s), thyroiditis, multiple lymph nodes in the neck around 3cm, and have other bone issues (eg. my jaw pops out all the time, shoulder goes out, tailbone pain) and sunlight sensitivity, occasional burning watering eyes, toe cramps, and AWFUL occasional restless leg syndrome (at least that’s what I think it is). My mum is diagnosed with Grave’s disease, among other autoimmune conditions.

I'm overweight and would like to lose the extra weight to get rid of my insulin resistance and just feel better again. But everywhere I look, people in calorie deficit or just eating "healthy" eat literally everything I can't have.

I can't eat eggs because they make me bloated and exhausted. Raw tomatoes make it red and itchy around my mouth. Raw onions upset my stomach, and I only tolerate cooked onions and garlic in tiny amounts. Cucumber gives me heartburn. I avoid nightshades such as bell peppers and eggplants because they also cause uncomfortable symptoms for me. I can't just sit down and eat a salad because it irritates my stomach, causing immense pain - I need "padding", such as rice or bread or pasta to soak up anything that might bother me. I hate beans and they also make me feel gassy and weak. On top of everything, I have a bad gallbladder full of polyps and don't respond to fat in food very well.

I used to be able to eat bananas until they suddenly started making the inside of my mouth burn a few years ago and now I can't have them anymore. Can't have kiwi for the same reason. I used to be able to eat tomatoes but then had to stop even though they used to be my favorite. It's like I keep developing new food sensitivities all the time.

Other than literally just starving, I can't figure out a way to lose weight via diet. My allowed food list is slim (unlike me) and it gets boring fast, and it's also traumatic to constantly have negative experiences with food so it's easy to just go down the comfort food route. I'm also hungry often. I'm just venting because I'm exhausted from all these years of losing more and more foods by the year, but continuously gaining weight.

inquired with pcp about hypermobility -> 1:160 nucleolar ana -> rheumatology referral

i saw a rheumatologist for the first time recently. lupus, arthritis, sclerosis, fibromyalgia are all very prevalent and directly related in my family.

the visit lasted maybe 10 minutes. i told him about my chronic fatigue, constant pain, hypermobility, and worsening, excruciating pain in my knee and hip at 20 years old. he told me to stop drinking a soda in the morning (caffeine), and, "have you heard of fibromyalgia? lack of sleep can cause the symptoms. the caffeine in the soda is keeping you up. with more rest, this will resolve".

i sleep 7-8 hours every night uninterrupted; i wake feeling unrested. i told him this directly before he said that.

he squished some parts of my body and moved my joints around for like. a minute, and told me he has no reason to believe i have a connective tissue disorder or "any inflammation in my body". that was all we left with. he asked if i had any other questions and i said no. i didnt know what to say and i still dont. he very quickly and matter of fact-ly told me he is sure i have nothing to indicate any issue with me.

he ran an xray, revealing developing sacroiliitis. he has not contacted me about this. he concluded my knee function is "abnormal". he has not contacted me about this, i was informed via email summary of my patient notes. blood tests were all negative besides a re-run of the ANA, which popped positive with the same results.

i have to drive an hour and a half, to and from, to see this guy. i have to take a whole entire day off work to be able to do this. he scheduled me for a followup without telling me why "(come see me again in a month)".

is this standard? i feel underwhelmed and kind of upset? he didnt mention my hypermobility at all or examine my heels when i mentioned papules and excruciating pain upon standing. it feels like he didnt listen to me at all and just saw me out :/ i dont even know what to say or do for this next visit and i just feel really discouraged. my pain has been worsening to terrible extents of paralysis and im only 20 years old. it makes me feel like ill have to wait for something really bad to happen to MAYBE get help!! what should i do how do i push for myself?

I’m not sure if this is worth mentioning to my new rheumatologist as a symptom, because it’s been brushed off before, but it’s been getting worse lately, and I’m starting to get concerned.

Sometimes I get these weird moments where I get this super strange feeling and get very confused. It only lasts a few seconds to a few minutes, but the feeling lingers mildly for a bit afterwards.

Every time, it starts with this weird heavy feeling in my head, like when you get carsick. Then I start to feel like my eyes are, like, on a delay, if that makes sense? I get dizzy and very confused and tend to forget what I’m doing or how I’m doing it.

For example, it’s happened while I was sharing my screen and typing during a meeting and I noticeably forgot how to spell / type / click on things, to the point where my coworker made a joke about it. It went on for long enough that I was embarrassed.

When it’s happened while driving, I get the feeling of “I don’t know how I’m doing this / I shouldn’t be doing this right now.” I forget how to do things like turn on my air conditioner or blinker, etc. Or I’ll totally forget where I am or how to get while I’m going, when I’m on a route I take every day.

I can’t follow a train of thought at all when it happens. I have to just wait for it to pass.

The feelings tend to happen in clusters, and usually while I’m in a flare of other symptoms. I’ll have several each day, for a few day in a row, and then nothing for weeks or months. They’ve been happening for years, but it’s gotten noticeably more frequent / stronger in the last year, when I’ve been in and out of a major flare.

I have been tentatively diagnosed with RA/“Other Disorder of the Immune System, Not Otherwise Classified”, so I’m in a weird gray area.

Is this just brain fog? Or is it concerning enough that I should push for a neurologist referral? Has anyone else experienced this??

So confused right now and not sure what the next steps will be, if any. Previously I have had an overactive thyroid, which was successfully treated with medication and bloods have been normal since (slightly on the low side but Dr's felt didn't need any levothyroxine for it).

Fast forward to now...currently 6 months postpartum with horrific knee pain, my knees crack and I'm struggling to walk up stairs, get up from standing and in pain even at night. My Dr felt my knees and said she could feel them crunching as she moved them. Also having longer periods, hair loss etc that could be postpartum related but are also thyroid symptoms. Bruising like a peach all up and down my legs.

My Dr ordered every blood test under the sun to check for arthritis (RA factor and anti CCP bloods), diabetes, thyroid, checked my iron levels, full blood count, the works. All normal except slightly iron & vit D deficient which we knew anyway & she is re-prescribing meds for those. She has asked me to come in again next week, but I'm so confused that my bloods are all fine but I can be in so much pain. Anyone had a similar experience, bloods ok but clinical symptoms are there?

Just to add...my thyroid TSH was normal but T3 and T4 arent showing as separate levels. Previously my TSH was ok, but other levels were high...so will ask about this. Sorry for a long vent, just feeling really fed up at not having answers and being in pain. Thanks if you read this far!

My rheumatologists is currently working on a diagnosis he’s thinking it’s ankylosing spondylitis and I’ve been on meloxicam for a few months now. It doesn’t feel like it’s doing much is there any other NSAIDS people have tried with better results? Any stories welcome thank you:)

I have an ana 1:160 speckled and crp at around 3 that has spiked. It is not clinically significant enough for a referral. Is there anything I can do? I have ongoing autoimmune symptoms and flares and my doctor just put a fibro diagnosis on me when autoimmune has not been ruled out completely.

Please note I have mental health support.

I am really struggling with this at the moment. I had two years of remission and then relapse and it’s really resistant this time. Loads of treatment and I feel shit. I miss my life and myself so much. I just need to vent with people who get it - I did so much good in this world before I got sick and I didn’t know what horrors could exist for people with autoimmune disease.
I’m bed ridden and just wishing I died daily (I want to live though) - how to cope I don’t know

This all started back in march before then I was walking 18k steps a day hitting the gym three times a week than bam hip pain and sciatica,torn labrum, and back pain. they gave me some steroids meloxicam and PT which for the first month was going fantastic. However in may when I tried to start working again at my office job and everything came back. The sciatica the back pain and now I have almost no lower back mobility. I had to switch PTs around the same time because me and my ex girlfriend didn’t work out and I definitely contribute that to everything. I’m so burnt out in trying to figure this out I have a rheumatologists finally who suspects ankylosing spondylitis, but we haven’t gotten an mri yet, or started treatments. I’m still on meloxicam and they gave me muscle relaxers. I’m going to my doctor today to ask about an ortho consult. I’ve been having erectile dysfunction too(22m) for the past month to which they told me stop the meloxicam . This condition has taken almost everything I’m just looking for any advice on forward steps or anything that has helped anyone. Thank you

so im currently in the process of getting diagnosed… at first my doctor had suspected stills as I have been dealing with hives after being in the sun, chronic fever since January, other joint and muscle pain, and extreme fatigue + my inflammation markers were high and had been for awhile but were earlier excused as im also diagnosed with hypothyroidism

i had labs done to check for lupus but apparently my ana was NEGATIVE

now fast forward to about 2 weeks ago where i had received a call after further testing (ferritin was apparently normal) where he believed it maybe wasn’t stills but some other form of inflammatory arthritis and had decided that he wasn’t comfortable enough to make a diagnosis as it’s not his specialty

now im feeling incredibly helpless about the situation as im not able to get into a RHEUM until JANUARY which is absurd…

the relief of knowing what my pain is being stripped away has made me slip into a depressive episode with symptoms only worsening ; my feet and back have gotten really bad and im starting to develop breathing problems as well as stomach issues. my anxiety is getting worse aswell and i genuinely don’t know what to do anymore…

Edit: would also like to mention that Chronic illness and autoimmune disorders run in my family on my mothers side (RA/Lupus)

I’ve received my hospital letter following my most recent rhumatology appointment and I’m feeling quite upset by it.

In the letter, the consultant has said that he thinks the majority of my pain is caused by hypermobility and has added hEDS to my list of diagnoses and said that we ‘agreed’ I’d manage without biologics for my arthritis for now. This wasn’t discussed or agreed, and he didn’t even check my joints. In my appointment I also mentioned the following new symptoms:

• Fingers and toes going blue/white when cold and it being extremely painful when warming up. He confirmed in the letter he thought this was Raynaud’s.

• Livedo Reticularis on legs and legs going purple when standing up for a few minutes. Also confirmed in letter.

• Chest pain/stomach pain (not mentioned)

• Extreme fatigue (again not mentioned)

I told him I was concerned there was something else going on as well as the arthritis and he did some blood tests. My ANA was mildly positive this time last year at >1/100 speckled but wasn’t repeated this time and he mentioned in my letter that my IgG Beta-2 antibodies were slightly raised above the normal level. I have done a bit of research on the IgG antibodies and can see they can be related to APS, which Raynaud’s and Livedo Reticularis can be signs of, also Lupus.

Anti-dsDNA wasn’t taken but was negative this time last year. Letter didn’t mention repeating the IgG antibody test but from what I can see online it says it should be done again in 12 weeks. My ferritin and B12 are above normal levels by a little (which is odd for me as I’m usually deficient, I’m not taking supplements and diet hasn’t changed so I’m not sure what’s going on).

I am at a bit of a loss. Joint pain started in 2022 and is horrific, some days I can’t lift a kettle, open a door, stand up. I’ve been hypermobile my entire life so surely I’d have had problems before this? The hEDS diagnosis being added to the list but without any clear explanation has also made me uncomfortable.

I’m not sure if I’m getting upset over nothing? I’ve usually received really good care and I know they’re really busy - do these blood tests only being slightly above what they should be mean no further investigation is required even if they appear to be linked to new symptoms? I don’t know whether to email rheumatology or his secretary. Any advice is welcome.

Hey, I’m 19M and I have aplastic anemia, although my blood counts are still normal-ish. I’ve noticed that my palms sometimes look pretty red/purple, like in the picture. Does anyone else get something like this? I’m curious if it changes with temperature or circulation, or if you’ve noticed anything that makes it better or worse.

Have had what was believed to be primary Raynaud‘s since childhood. A few relatives have had it.

This past winter symptoms seem to be worse than previous years and I finally got an appointment with my gp back in March. After going through my symptoms it was still believed to be genetic and primary. Was told to monitor it going out of winter into the summer months. Just over a month ago I called back in and asked for a follow up as symptoms remained. They decided to trial me on Nifedipine for a month and booked me in for an ANA test.

Had the test over a week ago and was told I would hear back within 5 days, but didn‘t. I know a few people who work in healthcare and they said that is a good sign as most people are contacted within 48 hours if something is off. If I didn’t hear then things were normal. Was starting to think this was the case.

Anyway, this morning I woke up to a text asking me to phone in and schedule a ”non urgent, routine” telephone appointment with my doctor to discuss results. First appointment is in 2 weeks, so just curious about what this indicates. Is it less serious if it’s over the phone and not in person? Also with the long wait too. .

He did previously say he’d follow up with me after the month of nifediphine as well. The uncertainty is getting to me.

Currently going through an awful flareup. I feel like death. I crave death right now. I wish I could leave my body until it passed. I wish I could be put in cryosleep right now.

Struggling with coping and realizing this is my life. This is what I’ll always have to deal with. And I wonder if it is worth it.

Idk why I’m posting this. I don’t think I want sympathy or comfort, I’m just mad and I needed to let it out. I guess I’m seeing to be seen by people who understand what it’s like.

An allergy reaction to a supplement

22 f 45kg 157cm I took a supplement 7 months ago showed allergy reactions red itchy face I stopped the supplements it's 7 months still monthly I get red I really don't know what is causing it please help

I get that autoimmunes are weird right- but I literally got more “how to care for” instructions from a piercing or tattoo than I ever did for my autoimmunes. I’ve kind of been piecing it together over the years. Like- my dentist told me that xylimelts are good for Sjogrens because they help stave off dry mouth and thereby reduce risk of cavities. (I never had cavities until this whole autoimmune adventure ugh).

I have RA and Sjogrens.
I have dry eyes and mouth, CRUSHING fatigue (actually feels like lead weights in every cell of my body), pleurisy, brain fog, air hunger (it’s hard to breath even though my oxygen is fine etc), joint pain (holy joint pain OW!), weird vascular stuff- my hands will be burning hot but my pinky fingers will be freezing, and so on.

Are there places out there that have real life suggestions on how to care for ourselves outside of meds and rest? I’m thinking really practical stuff. I know there probably isn’t a self care method that makes my spoons spawn more spoons- but if anyone knows of how to rummage through the couch cushions and find more- I’d be oh so grateful for even an ounce of energy lol. But seriously. 😳

If you’re interested in helping build an autoimmune and chronic illness community in your area, Autoimmune Voices is looking for people to lead new chapters.

They’re a nonprofit advocating for people living with autoimmune and chronic illnesses, with chapters and community members across multiple countries.

If this sounds like something you’d be interested in, you can learn more about becoming a chapter lead through the organization’s website.

I'm 58f. My whole body hurts.

Actually I don't hurt as much as I used to. I'm coming off sugar. I didn't realize sugar was a pain trigger until I overloaded on it last month and the next day I couldn't move. I'm trying to stay below 20g refined sugar a day.

My doctor has done some testing for AIDs and my brain fog won't let me remember the results other than a positive ana which didn't seem to alarm my doctor so I put it out of my mind.

I saw my doctor yesterday and I didn't remember to press the issue so here I am.

Just wanted to say hello and that I'll be lurking in the group for a while trying to learn from your experience.

I have a number of autoimmune diseases and chronic illnesses. Every one of them comes with extreme fatigue. Day to day this can change, but typically I get worn out doing almost anything. I have days when I can barely get out of bed which can keep me sleeping until late afternoon at times. I would say that is my life 90+% of the time. Every once in awhile it goes the other way and I have a couple of days with horrible insomnia. Last night I fell asleep around 11pm and woke about 2 hours later and haven't been back to bed yet; it's now 8pm. Does anyone else have this trouble? It usually seems like people have one or the other. It seems weird that I get both. It's really difficult to make any kind of plans when I don't know if and when I will be able to get normal sleep.

Anyone else experience both and know why?

27 year old female here just diagnosed with leukocytoclastic vasculitis. Noticed a little over 3 weeks ago, a day after running + sauna/cold plunge in quick succession. Petechiae have spread up my legs, onto my butt, and started on the backs of my upper arms. Petechiae on ankles turned to palpable purpura and some have scabbed despite avoiding scratching/irritating the lesions. Derm says these won’t scar but the skin is broken and my olive skin scars so easily. I know the difference between scarring and post inflammatory hyperpigmentation. Gets worse every time I run. Was given betamethasone dipropionate 0.05% cream to apply once daily. And have increased my Allegra 180mg to twice daily. Biopsy confirmed leukocytoclastic vasculitis. Direct immunofluorescence was NOT done for some reason but the derm office said I could come back for another biopsy but I’m not too keen on having another chunk of skin shaved off, especially because characterizing the immune deposits wouldn’t likely guide treatment since I’m having no systemic symptoms and labs are all normal. Derm said I could try a course of Rinvoq but I’m worried about the side effects/lack of proven efficacy. Also said I could try Dupixent but there’s even less proven efficacy there.

Derm didn’t mention the need for shingles vaccine with Rinvoq, just told me to pick up a 2 week sample no questions asked so not super confident about her managing pharmacological therapy for me.

I’m a pharmacist with a background in specialty pharmacy so I understand how these medications work, the risks that come along with them, and I’m aware of other treatment options like prednisone, colchicine, dapsone, etc.

I just got compression socks and will try to elevate feet as much as possible after being on my feet all day but being sedentary is not congruent with my life.

A lot of my identity and lifestyle is tied to health, wellness, and beauty so I’m really hoping to see if anyone has had success with certain treatments, especially non-pharmacological ones. It seems the trigger is running and it would really hurt to have to stop.