/r/Autoimmune

Photograph via snooOG

This is a space for anyone living with autoimmune conditions or those awaiting diagnosis to ask questions and share their experience with others. Everyone is welcome in this community, whether you or a loved one have a specific diagnosis, an unknown autoimmune condition, suspect autoimmunity, or anything in between.

Before posting or commenting, please read the rules.


Autoimmune disease - a pathological state arising from an abnormal immune response of the body to substances and tissues that are normally present in the body.

Autoimmunity, on the other hand, is the presence of self-reactive immune response with or without damage or pathology resulting from it. This may be restricted to certain organs or involve a particular tissue in different places. Wikipedia: autoimmune disease


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    /r/Autoimmune

    14,488 Subscribers

    1

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    Can bechets cause small cuts in your private. What about your lips? Skin .?.

    0 Comments
    2024/04/29
    22:29 UTC

    1

    Blood results: positive for all tested.

    Hello,

    I am waiting to hear back from my doctor but do my results indicate I am susceptible to AI?

    My symptoms: (27 F)

    Fatigue Joint and muscle pain Dysautonomia Shortness of breath Hair loss Acne Dizziness Sharp pains Can’t eat sugar

    Thank you.

    0 Comments
    2024/04/29
    20:27 UTC

    1

    could it be autoimmune ? bucket of symptoms

    I’ve always been a sickly person , but in middle school and high school it was mostly flu’s and colds. Then i got sick with Covid three times and now it’s been horrible ever since. Some symptoms that are persistent but not all of them are present at all times:

    Cracking of joints, i’m 21, i don’t think i should be cracking every time i move . Also pain in the joints

    Chronic fatigue

    Almost constant low grade fever

    Sometimes getting really dizzy

    cold hands and feet that sometimes go numb if i don’t move (but i guess that numbness might be normal , i must be pressing on a nerve )

    stomach and chest pain

    shortness of breath and difficulty swallowing sometimes

    sensitivity to outside temperature, i usually almost black out in heat and can’t stop shaking in the cold (i also itch a lot where i can feel heat on my skin and i often get red in the heat and cold especially in limbs)

    4 Comments
    2024/04/29
    17:51 UTC

    2

    ANA Titer Patter

    I know that you can’t diagnose a specific autoimmune disease just by the ANA alone. BUT I was curious if anyone would know or have info or tell me about their story with getting diagnosed and symptoms.

    My ANA came back positive 1:320 homogeneous AC-1. I don’t necessarily know what that means. I did make a rheumatology appointment but it’s not until June.

    I have had a few labs done. Histamine determination very abnormally high. Vitamin D extremely low. Cortisol low. My CMP and CBC labs are abnormal. I am anemic per the blood test. Serotonin labs abnormally low. HLAB27 antigen positive. Now you may say something about my doctor going over the results but haha I work at an OBGYN so they don’t really do anything with those results. I just didn’t want to go to my GP. I am going to an allergist this Wednesday. I do have a rheumatologist appointment in June and I know I’ll find out more then.

    Symptoms. Extreme facial flushing. When I say extreme I mean extreme haha. Very very hot and will spread down my neck, chest and arms. I get very fatigued and nauseous when this happens along with headache and stomach pains. I have bone pain in my forearms. I have bad hip and back pain. Super dry eyes. I do get these weird little sores in my nose randomly, never knew what they were. I get extreme joint swelling that will be red and hot in a flare. I have horrible circulation, hands and feet can be ice and turn purple and then go to extremely hot, red and swollen. I’ve lived with this for years and years and I’ve always been dismissed and told it was anxiety. These symptoms can happen out of no where for no reason at all. But I do have triggers. Alcohol, food, overly tired, hungry, emotions, sun, heat, cold, showering…list goes on.

    I do have photos if anyone would like to see the flushing episodes.

    0 Comments
    2024/04/29
    16:50 UTC

    1

    Burning + Pain in arms and legs

    Crossposting this from the Me/CFS sub.

    I've had the burning feeling many times before but the pain is new.

    I walked a bit on Saturday then went for a longer walk yesterday because it was nice (going against my rule of one walk a week).

    Last night, I had such a hard time sleeping because of the burning in my arms and legs, like the lactic acid feeling. However, there was pain on the sides of my calves and feet as well.

    Now, I have the burning in my legs still, a little less in my arms, and what feels like shin splints all around my lower legs. Pain killers haven't touched it.

    I called my rheumatologist who told me to check with my doc as something else might be going on but she can't see me herself unless my doc says I need to see her (which is odd, but whatever).

    Does anyone get this with just CFS? It sounds like Fibro to me (which my rheum also doesn't treat..) but maybe it's just a bad ME flare?

    Anyone here have any insight on what else it could be?

    If it helps, my daily symptoms are heavy fatigue, brain fog, word finding issues, weakness, headaches a few times a week, along with dry eyes/eye pain if I don't keep my electrolytes up.

    Thanks.

    2 Comments
    2024/04/29
    16:36 UTC

    1

    Anyone has excessive urination?

    Episodes of clear urine and copious amount. After a day or two, it returns back to normal color. My wife has same issue. Are there any stds that are auto immune?

    8 Comments
    2024/04/29
    15:33 UTC

    0

    Right Sided Body Pain

    Help! For approximately 10 years I’ve had a dull pain under right rib cage. I’ve had CXR, CT and HIDA scan with all being normal. Over the years pain has progressed to shoulder, hip and great toe joint all on right side with continued rib pain. Both siblings have psoriasis (brother) and psoriatic arthritis (sister). I have zero pain on the left side of my body. I do have a lot of GI issues which showed gastritis. Anyone else experience aysmetrical pain?

    2 Comments
    2024/04/29
    11:01 UTC

    1

    Acne and hashimotos disease

    Anyone have moderate to serve acne ? Who also have hashi’s ?

    0 Comments
    2024/04/29
    05:08 UTC

    2

    Positive titer and no specific symptoms. What should I do next?

    So I signed up for a full blood work up through function health. I have always been very proactive in my health and liked their pricing. Was very surprised when I saw these results. Only other test out of range is my ferritin is low at 12, which has been a chronic issue with me for years even on iron supplements. My WBC is 3.8, which is borderline low. It’s been 5.0 in the past. I also was tested for celiac as I have always had on/off bloating issues with occasional diarrhea that had been going on for years. All those tests were negative. I have been trying to think if I have had any other symptoms and only thing is I occasionally have restless legs and have hand pain at times. This in no way has interfered with my life. I work full time, take care of my kids and animals with no issues. I workout 4 days a week. I ruck and lift weights with no issues. I guess I should make an appt with a rheumatologist? I just worry that I’m not sick, they will not want to do anything? Or think I shouldn’t be there? My mother does have dermatomyositis so I do have a family history. Just thought with the high titer I should have severe and consistent symptoms. I would love anyone’s insight and what you think my next steps should be.

    11 Comments
    2024/04/29
    01:49 UTC

    0

    Skin reaction to tears?

    I was watching an emotional movie last night and got quite tearful. When I went to the bathroom & looked in the mirror, my face had red streaks all over it (presumably from tears falling down my cheeks). It almost looked like I had scratched my face. Does this happen to anyone else? Anyone know why? I have diagnosed psoriatic arthritis but wondering if I have a secondary autoimmune thing because I also have Raynauds & some other strange things. If anyone else does get this, what diagnosis do you have? TIA!

    2 Comments
    2024/04/29
    01:46 UTC

    1

    Advice on next steps: Retesting for Celiac Disease

    TLDR: It was recommended to me as someone with Hashimotos to try a gluten free diet, not only does it help with the extra weight gain that comes with Hashis but it could also help with an underlying undiagnosed gluten intolerance triggering symptoms like rashes, itchy spots, bloating, weight gain and general inflammation which is common with hypothyroidism. Following doctors orders, I went gluten free for 2 weeks and felt great, I noticed a huge difference with my bloating and just overall felt marginally better. During this time, it was brought to my attention that it probably would have been a good idea to start off with a celiac test to rule that out as a possible contender since it is not uncommon to have more than one autoimmune disease. Since I had already started going gluten free for 2 weeks, that's where the confusion started. My doctor thought since I had eaten gluten my entire life, doing 1 week of gluten foods before my blood test should be enough. I know research typically shows to do a gluten loading for 6-8 weeks for the most accurate results. Regardless, it was super hard to do this gluten overload. I ate anything I could get my hands on, pastas, pizzas, breads I didnt hold back. However, my body was not happy, I suffered from instant painful bloating post meals, it looked like I was 4 months pregnant, I would have to unbutton my pants post eating. My stomach hurt or it would churn. I know my doctor recommended I do 1 week of this diet and get tested, however I stuck to this diet for about 2 weeks before getting tested due to appointment availability at my local lab. Test results came back, and I am negative for celiac. I am relieved but, but not convinced. I have continued to eat gluten since, but the bloating post meals is still pretty bad, and any weight I lost during the restriction, I gained back. Some symptoms like my stomach cramping have gone away (or I guess my body got use to it), but I definitely don't feel great eating gluten.

    Fast forward 1 month (now 6 weeks since restarting gluten), I am wondering if it is worth getting retested. The only reason why I mention this is I recently had a dentist appointment and the dentist was surprised by the staining on my teeth since I don't drink coffee, don't smoke, and I have pretty good oral hygiene. It was brought to my attention that tooth staining could be due to my saliva being more acidic and that could be because of my diet / nutrient absorption which could also be hinting at possible celiac disease.

    After alot of back and forth the past couple of months with doctors appointments, sometimes I feel that I am better off listening to my body and doing what is best for me than seeking medical advice and looking for a concrete diagnosis. Wondering if anyone has had similar experiences and if it would be worth riding out the next 3 weeks and repeat the test for more accurate results (not sure if it would make too much of a difference).

    2 Comments
    2024/04/29
    01:26 UTC

    2

    Joint pain alone no other symptoms

    Hello, I’m not looking for diagnosis however, I’m at a holt. As the title says I have joint pain and joint pain alone. It isn’t severe or debilitating, it’s more of and ache than a pain. It’s in my hands/ fingers and knees occasionally my elbows. But not simultaneously. For example knees could ache. Then fingers could ache but not together. Or one knee could just ache alone. I have no swelling or stiffness or warmth The mornings I’m pain free and I have no stiffness. Joints aren’t tender to touch it’s simply just random aches that moves about. has gotten better recently before it was more constant now has died down a lot. ( been having it for a month.)
    Sometimes it’s a single finger aching sometimes it’s the whole hand.

    Can’t get doctors to take me seriously due to no accompanied symptoms.

    Has any1 else’s experienced this. If so how did u go abt it with your doctor?

    Any advice is truly appreciated.

    0 Comments
    2024/04/29
    00:49 UTC

    1

    Does the ANA pattern have much diagnostic value?

    My ANA came back 1:1280 with homogenous pattern. The reflex panels were negative. Low C3. Otherwise everything looked normal; CBC, Metabolic, ESR, CRP, TSH. I’m being referred to rheumatology for further evaluation.

    What confuses me is that my ANA is homogenous, yet I tested negative for all of the antibodies it reflexed to (anti-dsDNA, ANCA, U1RNP, Smith, SS-A/Ro, SS-B/La, SCL-70, Jo-1, Centromere). I guess I don’t entirely understand how I have such high ANA without identified antibodies, unless they just haven’t been identified by the tests yet.

    3 Comments
    2024/04/28
    20:13 UTC

    2

    Just got a referral to rheumatologist and I am doubtful...

    Hello everyone,

    First time writing at this sub. I will try to keep this brief and please let me know if anything is not allowed here. I am in the midst of being examined for myasthenia gravis. My current diagnoses include h-EDS, IST (& suspected POTS), (suspected) endometriosis, sebo/sebopsoriasis, osteoarthritis, bulging discs, and recurring SIBO. The neuro who suspects myasthenia gravis ran 11 vials worth of blood tests to rule out or in other conditions that may cause muscle weakness. I also had an MRI to rule out MS, stroke, aneurysm, etc. The only things that have returned noteworthy are:

    Complement c4: 9 (15-57)

    and

    ANA: 1:40 Nuclear, Homogenous

    I also have had high MPV for years which doctors say is fine and low IgA which doctors also say is fine even though when I get sick, I get really terribly ill for way longer than I should. I've always been a sickly person. The neuro said in any other circumstance the ANA would be irrelevant, but given the low complement he feels it may be significant. Complement c3 was on the very low end of normal as was creatine kinase (31; 29-143).

    The tests included those for inflammation, lupus, ra, sjogrens, polymyositis, lyme, and more. All normal.

    He has referred me to a rheumatologist to look into this further and I suppose I am very wary of going down this road. I've been referred to them several times in the past and it seems they are quite limited in their scope. While this is the first time anything in my blood work has actually shown autoimmune activity, I am doubtful they will even entertain pursuing my case.

    My providers all believe I have autoimmune activity and neuromuscular dysfunction, but would a rheumatologist really be able to do anything if I don't have any antibodies or signs of connective tissue inflammation?

    My symptoms include: brain fog, sleepiness, fatigue, poor memory, muscle weakness, ptosis, strange bouts of deep seated muscle pain beneath large muscle groups, various types of headaches and migraines, photosensitivity, dizziness, tinnitus, double vision, eye pain, poor balance, poor temp control/flu like shivers, night sweats. I flare once every 4-6 weeks.

    I do not have joint pain, swelling, or redness. I do have rashes which are treated sufficiently by antihistamines. I do experience extreme flushing that comes and goes but has no distinct border or pattern.

    I have been on 6 mg low dose naltrexone for over a year and and 600 mg gabapentin for even longer. I sometimes wonder if this is masking other symptoms. I am also keeping an eye on TSH levels as they have and continue to decrease over the years (last test was .8; .45-4.5). No one has tested for thyroid antibodies.

    I guess my question is, what can I do to make this appointment productive and fruitful since it does not seem like I am a typical rheum patient? Are there any other tests that are warranted or conditions to be considered? While I wouldn't necessarily consider myself to be in pain day to day, my symptoms are incredibly limiting and I do not have the ability to take care of basic necessities.

    2 Comments
    2024/04/28
    15:12 UTC

    1

    Red marks on hand

    Recently diagnosed with psoriasis and psoriatic arthritis. My hand hurts like hell and I have these red lines popping up on my fingers. Haven’t had this happen before. Anyone else experience this or know what it is?

    0 Comments
    2024/04/28
    14:12 UTC

    2

    Coping with the reality of having an autoimmune disease?

    Hey guys, so last night I was dancing away, my joints hurt a bit, but I was fine, however al I keep thinking about is this stupid myositis panel that I’m waiting results for. I’m so scared as my Doc is adamant I have Myositis/Vasculitis based on my rash and high ANA (1:2560 homogenous). I’m terrified to get a diagnosis, I feel wellish in myself, I am a bit nauseated atm but I imagine that’s due to wegovy.

    Please tell me life isn’t over when you get a diagnosis? I love feeling sexy and confident when out and I’m scared I’m going to lose me.

    1 Comment
    2024/04/28
    07:13 UTC

    1

    Burning/Swelling under skin

    After a year of severe numbness, poor circulation (in small vessels*), petechia, bruising, hair loss, mouth ulcers/blisters, vision problems, sinus swelling, migraine, and even temporary paralysis throughout my body... now many of those areas have severe burning hot pain. And I don't just mean it just feels like its burning, I mean its actually hot to the touch.
    (Eg. When my forehead starts burning, my thermometer suggests Im running a fever even though the rest of my body is cold to the touch. Its Autumn here atm.)

    The worst effected is my stomach and face. Sometimes I get a red heat-like rash, have some (admittedly barely noticeable but very much felt) swelling under the skin, and the occasional sore/blister. But the pain is the worst, it feels like someone has pressed a hot iron on to my skin, I can barely even touch it. Reminds me of sunburn.

    So far the only thing that helps is NSAIDs and NSAID cream, but even that barely does anything.

    I should add my tests show normal everything except for Low WBC count and Low C3/C4. I'm on a waitlist to see a rheumatologist. Doctor suspects lupus in its early stages, sclerosis, or small vessel vasculitis, but isnt sure.

    But has anyone else had this? And if so, what helped reduce the pain? I was thinking of asking the doctor for some stronger pain cream, but I dont even know what would help.

    (*Large/medium vessels were tested and are fine. But doctor suspects smallest vessels since its pretty damn obvious I have really poor circulation as areas would turn blue/black and go numb. If pressure was placed on an area, say my wrist or thigh, you could watch my hand or leg go blue in real time.)

    0 Comments
    2024/04/28
    01:01 UTC

    1

    Prednisone Face Puffiness

    Does face puffiness ever go away with Prednisone? This is my second month taking it and I still have moon face

    12 Comments
    2024/04/28
    00:01 UTC

    0

    ANA negative but diagnosed with an autoimmune disorder?

    I was wondering if anyone was diagnosed with an autoimmune disorder while testing ANA negative? Thanks!

    3 Comments
    2024/04/27
    23:22 UTC

    6

    Autoimmune diseases

    Beside the recently diagnosis of Lupus, (50F) can anybody tell me what this could be. I run low grade fever everyday from starting near 2:30-6:30pm about every evening. I can freeze in 80 degree temps. I’m scare it is something serious. It never fades it either turn really bright red or dark purple depending on temps. I suffer. From migraines, brain fog, dizziness, and now my thyroid seems to be acting up the past few night. Im aware of Lupus symptoms & possible livedo reticulitis but what could this be?

    7 Comments
    2024/04/27
    22:57 UTC

    1

    Perioral dermatitis or something else?

    Currently my face isn’t as angry as it can be or dry and flaking/peeling but it’s still visibly red in the areas that do get inflamed and angry often enough. This all started 2021 and I had originally thought it was due to the masks but I’ve been mask free for years now and still have this issue. My facial skin used to be able to handle pretty much everything I threw at it but now the slightest change seems to make the red area pissed off so it inflames, then flakes and peels.

    Side note: I did see a dermatologist way back when where I used to live but I ended up moving states a few months later. Haven’t been able to get in to see a dermatologist since I got here 2 years ago. First derm did prescribe ketoconazole and metronidazole cream. His notes said “likely seborrheic dermatitis versus perioral facial dermatitis”

    Side note 2: I was diagnosed with Dermatomyositis back in 2016.

    1 Comment
    2024/04/27
    22:11 UTC

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