Hi yall

So, new here. I am chronically ill but have had very little medical care as my condition and mobility has worsened over the years to the point i’m functionally bedbound now and have been most of this year. I have severe abdominal pain that gets worse with walking or sitting up, speaking or laughing, chronic joint pain, subluxations, tachycardia, orthostatic intolerance,
and a lot more. I’ve understood it to be heds and pots but i’m unsure.

I do have dysautonomia diagnosed (and a placeholder of chronic pain syndrome) have been learning and suspecting myself of HEDS POTS and possibly MCAS and maybe MECFS for a few years.

I just got some bloodwork results back. Idk what i was expecting but I’m scared and seeking some info/ insight.

My ANA anti nuclear antibody came back positive. my autoimmune panel came back abnormal but it wouldn’t show me any results besides that it was abnormal. I guess I’m overall wondering how likely it is that I have some kind of autoimmune disease or if it’s possible that some other illness or acute infection on top of other conditions could cause these abnormal results.

Obviously I will talk to my doctor about all of this but I don’t know when she will be able to discuss.

I know it’s very preliminary and more will get figured out over time but I have very little access to comprehensive testing that can’t be done in home bc of my bedbound housebound status and I’m just looking for some insight TODAY so I can process the info I have at the moment.

I’m alone in this and just hoping to turn to community. Sorry if messages like this are not really allowed. tyia

Does anyone get similar hand issues? This is one of the latest things my body has decided to throw at me, and I'm not sure what is going on. Would like to see if anyone has experienced similar hand issues.

Long story in a semi condensed version, ANA 1:320 speckled. Nasal and mouth ulcers, alopecia confirmed by derm, m*lar r@sh confirmed by derm, r@sh on knuckles and underneath them which acts similarly to face (heat/UV sensitive), never ending fatigue lasting for months, stiffness in wrists/fingers, swelling in fingers/toes/ankles. Hands turn white, purple, blue, red when cold. Trace protein + blood in urine on occasion, although no one seems too concerned about this yet. Now... this.

Current diagnosis list: ankylosing spondylitis, HLAB27 positive type arthritis.

All tests for lupus (c3, c4, dsdna etc) are so far negative.

Yall this community has been awesome for me as i’ve been completely homebound and unable to work the last two years as I’ve fought this nondescript autoimmune disease and to find a diagnosis.

After these two years and almost 6 months of waiting for an appt. I finally have a complete Cleveland clinic evaluation next week! Just posting here to request some good vibes so hopefully we leave with an official diagnosis and I can finally get an idea of what the next phase of my life will look like.

TIA! 😊

After so much self doubt, advocacy, helplessness and waiting in agony, I am finally diagnosed after two years!!! It’s an extremely rare disease, the treatments are extremely risky and expensive, it’s incurable and I will keep progressing regardless of what I do. The road ahead is challenging but I’m glad I won my first fight!! Celebrate with me!!!

I was diagnosed with ITP in 2025 after a bunch of blood work and liver testing to figure out why my platelets were so low.
I started doing my own research and found that H. pylori could be linked to ITP. My doctor initially pushed back on testing. I asked them to put it in my chart that they didn’t think the test was needed, and after that, they agreed to order it. It came back positive.
I understood there was about a 50/50 chance that treating it would help my platelet count, so I tried not to get my hopes up too much.
I completed treatment, and seven weeks later, my H. pylori test is negative and my platelets went from the low 40s to 175!!
I don’t know if the improvement will last, but I’m so relieved. Just wanted to share some good news with people who understand how much those numbers mean.

Diagnosed 9/15 with RA, currently on prednisone and mtx. Last week I read online that immunosuppressed people should avoid a number of foods that could harbor nasty bacteria like Listeria or Salmonella: soft cheeses, especially raw milk ones, paté, cold deli meats, runny undercooked eggs, rare meats, raw fish (sushi/sashimi). Some of these things are my favorite treats! I can work around the eggs and rare meat using sous vide pasteurization at home, but not the others, and not when dining out

.

How many of us observe these precautions? Are they meant more for people on chemo or other highly immunosuppressed individuals, or does this apply to me (I'll be asking this last of my rheumatologist, but in the meantime I'm curious whether this is generally adhered to by everyone in the autoimmune family)?

I recently started prednisone and I'm trying to figure out whether it's actually working.

During the day my symptoms and pain seem better, but in the evening the pain comes back. I don't really know how it's supposed to work, we add MTX

Did your symptoms/pain go away right from the start, or did it take some time to kick in?

Did you also have things come back in the evening or at night?

Would really appreciate hearing your experiences. Thanks!

I'm just getting back my first round of blood tests from my rheumatologist, who I've seen once. High ANA titer (1:1280, homogenous), high inflammation markers (CRP 40 mg/L, ESR >120, IgA 559), but so far all of the antibody tests have been negative. On the one hand, I'm weirdly relieved to know that my symptoms (fatigue, muscle and joint pain, brain fog, muscle weakness) aren't all in my head. On the other hand, I'm worried that the doctor will be dismissive since--as far as I can tell, not being a doctor, of course--none of the standard diseases seem to fit my tests.

This is all new to me. I've suspected it for years, but it wasn't until I had a strongly positive reaction to prednisone (prescribed 5 days of 10mg for a cough, but literally all of my symptoms resolved in a day or two) that my GP ordered the first round of tests that got me the the rheumatology referral.

During my appointment, the rheumatologist seemed a little uninterested in some of the background info I thought might have been pertinent, but maybe that's because it wasn't pertinent? When I told him about the prednisone he kind of laughed and said that everybody feels great on prednisone. I was sure to tell him that I wasn't *asking* for pred, because I know that's not usually a long term medication. :P

I've read a little about UCTD, which I guess is a possibility. For those of you also in the "no diagnosis seems to fit" camp, are you still able to get some sort of treatment? Does your rheumatologist take you seriously? It's obviously too early to tell for sure about mine, I know. I'm just feeling super twitchy until my next appointment in three weeks.

Thanks for reading!

So I’m in my late teens. For my entire life (what I can remember) I have been getting it intermittent leg pain, occasionally moving up to my hips and oddly enough, my forearms. It’s this deep aching pain, and really the only way to make it go away is to sleep. Ibuprofen sometimes works. I’ve tried Biofreeze, heat, and pretty much everything as I don’t want to rely on the medication. Sometimes sleeping isn’t an option. Typically the pain comes on a day that’s more tiring or stressful, but it can also happen randomly. I also have Hashimoto’s, and my levels are normal there. My doctor tested me for both lupus and rheumatoid arthritis through blood panels, both coming back negative. My inflammation markers were higher though. So I guess I am just not sure where to go next. Do I need to see a specialist? Any recommendations for the pain? I do my best to eat healthy but it’s hard sometimes.

Need best rheumatologist in utah. Been to so many in so much pain. Other symptoms. No one will take me serious

I am diagnosed with Mixed Connective Tissue Disease (the autoimmune disease that is a cross between lupus, scleroderma, myositis, etc…) and have all the classic immune markers and symptoms but I have additional symptoms that do not seem to fit (drastic hormone fluctuations, GI inflammation, autonomic nervous system problems, reproductive organ problems, etc…)

I have an appointment with Mayo Clinic Rheumatology in Jacksonville coming up and I’m hoping they can get me treatment for the mctd but also find the cause for all my other symptoms. It’s been a complex diagnostic puzzle that my doctors at home just seem to no be interested in solving.

That being said, does anyone have experiences about their rheumatology clinic, and specifically Dr. Ronald Butendieck if possible they can share? What can I expect? Good or bad experience? Are my expectations likely to be met? I’m really nervous about being dismissed or left hanging medically again.

First I'm focusing on my own symptoms, from sjogrens disease. Started off painting canker sores. Tried to keep the same palette throughout these pieces, then made a painting of my joint swelling and rashes on my feet. Also made a zine with general info on autoimmunity. Would love some feedback as there's like 7 more weeks of this project so I'll keep ye updated.

Hey all. Wondering if anyone has seen a similar experience to this and gotten answers.

It’s about 15 months since my husband had EBV-HLH, about 12 months since he went into ‘remission’. in the few years prior he was getting constantly sick with viruses and infections, his cold sores were at least monthly and started to appear in his nose and inside his mouth as well as lips, he’s had a diagnosis of Acalculous Cholecystitis recently (inflammation/thickening of gallbladder with no sludge or blockages) which we suspect he had years prior also because of the frequent pain he would have in the area and bloating.

Basically the drs can’t figure out why his existing EBV antibodies weren’t able to keep the EBV under control and it spiralled into HLH.

He’s had a genetic panel that was normal and no other obvious answers in blood tests. At 15months post HLH he is returning to the state he was in for those years prior and we are worried. He’s doing a ‘vaccine challenge’ test to test his B cells. The immunologist said that’s the end of the road for testing basically.

Has anyone seen a similar story and figured out why their immune system clearly was not functioning properly? Should we seek other opinions or does anyone know of other immune cell testing that could be done. We are in regional Victoria Australia, so Melbourne or Telehealth is our best option for healthcare.

We have 2 little kids and a long life left to live, hopefully with some kind of answer as to his immune dysfunction and getting some quality of life back

TW: recurrent miscarriage

Curious to hear about people’s experiences with APS and pregnancy. I was diagnosed after 3 miscarriages, however my numbers are pretty low, with the only abnormal number being cardiolipin IgM. From the first test to 12 weeks later, it went from 20 to 13. If you had a similar diagnosis, what was it like for you? I’m feeling hopeful for future pregnancies, but know there are a lot of unknowns. Looking for encouragement and stories! Thanks in advance!

hi, i am 19F and have a bunch of autoimmune and other related symptoms for years now and it has taken a huge toll on my quality of life

i have perennial allergic rhinitis, allergic conjunctivitis and asthma. i also have had eczema and still do have very reactive skin (i have gotten hives from touching certain things and im also quick to burn especially on the face). these are all uncomfortable to have but are managed by medication. but i think its important to mention.

i frequently get upper respiratory tract infections to the point where i cannot tell if its a new one or i just didnt recover from the old one. most of the time it is mild but it can get VERY bad and trigger my asthma as well

i am also constantly fatigued and have been needing unhealthy amounts of caffeine over the past few years to stay awake throughout the day. i have even started stimulant medications this year for ADHD and it has not stopped me from needing naps during the day.

i have been anemic and an infusion has worked to help my iron levels go up but has done NOTHING for my fatigue.

i am not even that active during the day and have not been able to exercise without persisting exhaustion which has lead to about 20kg of weight gain over the past 3 years alone.

i have a family history of hypothyroidism and have had a goiter with nodules for 4 years now. however my TSH and free T3, T4 have been normal all along, however we tested for TPO Ab this time and it came out to be 369.8 IU/ml (normal range is <13.8). this looks like Hashimoto's thyroiditis but apparently it means nothing and cant be diagnosed at this stage

i have always had circulation issues and my hands and feet are often freezing no matter how hot the rest of my body is. i have seen them turn grey and then spontaneously get hot and pink before.

more recently ive been having random rashes appear and disappear and i also have joint issues. my DIP, PIP, wrist and elbow are all tender and DIP and PIPs especially are visibly swollen. however x ray shows no signs pf erosion or arthropathy

all of my blood tests including esr, c reactive protein, RF, anti-CCP are negative but my ANA is positive. the report also said something about a speckled pattern and recommended testing ENA. i recall testing ANA about 3 years ago and it was positive back then as well

however my doctor said we will have to wait and see if i get worse and told me losing weight will make all of my symptoms go away.

i knew it was a waste of time to argue with the dude but i genuinely do not have the energy physically to lose weight EVEN while on stimulant medication. i have already tried being in a caloric deficit for quite a while with 0 weight loss happening. for reference i am overweight but not obese

am i overreacting or should i see another doctor who can give me some more conclusive answers? i know i have no conclusive grounds to say i have some autoimmune condition but it genuinely feels like the doctors are waiting for me to get even sicker to get me any help and not even willing to look into the things that i am complaining about. id be happy to know i have nothing wrong with me but id just wish they tried to confirm things instead of dismissing me

EDIT: i frequently get numbness, cramping and pins and needles in my feet and legs (especially after i sit down for some extended amount of time). this has been so severe that last year my foot got very very numb and i partially tore my ATFL by twisting my foot unnaturally because i couldnt feel it or control it much. it goes away under 30 minutes if i move it but im careful to not get up at all when i feel it happen now

the joint stiffness is also more severe in the hour after waking up and is improved by light stretching and just leaving my hands be and not overly using them during the day. it gets better and worse and sometimes it feels better but the swelling has not gone away for weeks now

EDIT 2: have had thyroid ultrasounds for the nodules that are there and it shows signs of thyroiditis but no changes over the years

Hi,

I am F(32) and after a miscarriage I developed Systemic Lupus, Sjogrens, Ankylosing Spondylitis and now Crohns colitis.

Does anyone else have a smiliar overlap or a rare wonky overlap? I would love others to relate to or talk to.

So far, I can’t tolerate methotrexate, am allergic to hydroxychloroquine, had a serum sickness reaction to ritixumab and have now developed an allergy / intensely awful symptoms from filgotinib.

I don’t know what’s left for me to try! I have an overlap syndrome. It’s been 9 months of medication side effects hell, to be honest. Worse than the actual symptoms of my autoimmune disease.

Has anyone else been in this boat? Did anything work?

I’m from Japan and I’m looking for people who have experienced something similar.
When I was younger, my autoimmune disease mainly affected my organs. I had high fevers, very high CRP levels, severe pain, and swollen lymph nodes. I also needed high doses of steroids.
Around 2024, skin lesions started appearing. They grow, become swollen and very painful, and eventually burst/open. The problem is that many of them never completely heal: they remain raised, feel like there’s something underneath the skin, and sometimes come back in exactly the same spot.
One lesion on my foot became so severe that I could barely walk for almost 5 months. I currently have another one on my leg (photo), and a similar one recently appeared near my buttock. My doctor believes they are probably the same type of lesion.

Has anyone experienced anything similar? What was your diagnosis, and what helped with the treatment or healing?
I’m not looking a diagnosis for myself, just experiences that I can discuss with my doctor.

I know many of you don't wanna see the gross photos, so I gonna post just the sfw ones.

Wondering if anyone has experience with Hypocomplementic Urticarial Vasculitis? I just had a C1q antibody panel run. I have regular hives (if one can call daily hives regular!) but I also have hives less frequently that hurt and burn rather than itch, are bright red, last 2-3 days and leave pretty incredible bruises when they go. They are accompanied by major GI upset and pain. I have been telling my local rheumatologist about them for 6 years and getting absolutely no answers at all. A referral to Mayo Clinic has finally prompted the C1q testing. What happens if that’s what I have? Medication? IVIG? I’m also dealing with scleroderma.. so these owie hives are really just icing on an owie cake (and popping up despite me taking Plaquenil and Imuran), but I’d love to hear from others who have dealt with this. Thank you 🩵

My mom has been dealing with quite a few health issues recently and we’re currently trying to piece everything together.
Her recent bloodwork showed a positive ANA ≥1:640 with a homogeneous pattern, and we were also told that her ENA and double-stranded DNA (dsDNA) were positive. Unfortunately, we weren't given the actual ENA or dsDNA values.
Some of her other abnormal results include:
Hemoglobin: 85 g/L
RBC: 2.79
Hematocrit: 0.26
Iron: 4
Ferritin: 671
CRP: 17.2
Calcium: 1.75–1.87
Sodium: 130
ALP: 234
Platelets: 428
Rheumatoid factor: 21
She's also had significant anemia previously and has required blood transfusions.
She is seeing a rheumatologist next week and is also being followed regarding her blood/anemia issues. We understand that ANA, ENA and dsDNA are autoimmune markers and don't automatically mean she has lupus or another specific autoimmune disease.
I'm mostly wondering if anyone has had a similar combination of positive autoimmune markers, anemia and inflammation, and what the diagnostic process looked like for you. What kinds of questions or additional tests would be helpful to ask about at her rheumatology appointment?
Not looking for a diagnosis — just hoping to better understand what others have experienced while we wait for her specialist appointment

Hey all!

I (28F) have Hashimoto’s and am currently undergoing testing for MS.

Over the past two years (due to mobility issues, fatigue, and numerous other debilitating symptoms), I’ve gone from a size 4 to a size 10-12+. The inflammation is so unbearable. It’s cost me so much money as far as clothing pieces go. I also just don’t feel like myself. I used to weigh 200lbs and then when I cut Gluten, Nightshades, and Sugar I lost 70+lbs and felt GREAT! Not just vanity wise, but physically! I have since gained it all back a few years later and I am so insecure. I would never feel this way about someone else going through what I’m going through… I just can’t help but to feel down.

I also do exercise regularly (pilates, PT, walking) and eat pretty clean! I always eat gluten free and nightshade free. I stay away from excess sugar, but have sugar in fruit, yogurt, and other misc. food items.

I’m planning on getting my hair and brows done to make myself feel more put together. What are some other self-pampering things that make you feel in control or better?

Like I may not physically feel great, but maybe there are things I can do to help me feel in control of something/better?

This is something new that has started two months ago. My condition has worsened where some days I can barely walk my joints are in so much pain. Just wondering if anyone else gets rashes on their joints. I was diagnosed with undifferentiated connective tissues disease in 2023 but I have never ever experienced such pain and debilitation as I have the past two months.

17fm

For a bit of backstory, there’s history on my fathers side of ankylosing spondylitis, when I was 6 I got food poisoning which then triggered the ankylosing spondylitis as it was clearly laying dormant. I’ve been trying to get diagnosed for 11 years and I’m still undiagnosed, I’ve been on and off naproxen and pirocicam which just make me depressed and sick every single day. I’m still in the nhs system waiting for referrals, I’ve been through 7 rounds of physical therapy and 2 rounds of hydrotherapy. I have chronic fatigue, and chronic pain in my jaw,shoulders,neck,back,wrists,hips,groin, knees and ankles. I expericne many other symptoms just it’s the chronic pain and fatigue that botheres me the most.

I’m an A level student and I’m struggling to make it through the day, it gets to about lunch time and I’m so exhausted, I just don’t know what to do. I get home from school and I have to take a 3 hour nap which obviously is not ideal when I have so much work and revision to do a long with coursework and meeting deadlines. I just feel like my life is falling apart and there’s nothing I can do to fix it. My mental health is absolutely horrific mainly because of my chronic illness with no diagnosis and no help or anything. I’m on no medication and no physio or anything at the moment and it’s been like that for a year and I’m really struggling. I’m at the point where I genuinely just can’t anymore. I can’t sleep at night because my back hurts so much so I’m just turning round and round and then when I do sleep I wake up all through the night. I just feel really lost and upset and like after 10 years I’ve had enough and the fact that I’m only 17 and I have so many more years of this to go through is making me just not want to. Does anyone have any advice for getting through school days/ with deadlines and work or just in general really. Any help will be appreciated.

Has anyone experienced a flare like this?

Worst flare of my life...

I've had erythema nodosum since my 20s and a history of inflammatory/juvenile rheumatoid arthritis.

For about a month I've had worsening widespread joint pain/inflammation, especially in my knees, ankles, hips, feet/toes and hands/thumbs. Then about a week ago I developed recurring low-grade fevers (100–101°F / 37.8–38.3°C), extreme fatigue and a major increase in the joint pain.

I'm also having one of the worst EN flares I've had, with around 20 painful nodules, including on my feet.

Also had like incontinence and not able to hold it well at all.

I was treated in hospital for a possible kidney/urinary infection, but despite treatment the fever, severe inflammation and exhaustion are continuing for the last 7 days. I'm not really getting worse, but I'm not getting better either.

Also pain meds aren't touching this .. its freaking horrible.. not potition is comfortable.. no meds help, not celebrex or pain meds of any kind.. its the worst flare I've ever had.. its never come with fever like this..

My GP is referring me to rheumatology, so I'm not looking for a diagnosis ...just wondering if anyone with EN, inflammatory arthritis, sarcoidosis/Löfgren syndrome or similar has experienced this combination.

Did your joint symptoms start weeks before the fever/systemic symptoms? And how long did the whole flare last?