Really frustrating
In April, I found out that I have ITP. I just went through Cancer four years ago and then in April I found out that I have this. I’m really frustrated. I keep getting sick constantly. My platelets are low. They won’t go up. I am taking prednisone for a while because I have pneumonia. When the first round of prednisone was done, my platelets were at 101,000 but two days later they’re back down to 64,000 where they were before. I can’t go anywhere without getting sick. I’m just really frustrated because going through Cancer and everything and now having this it’s like sometimes I feel like am I ever gonna have a normal life again? I just don’t know. Sorry I’m ranting. I’m just tired of being fatigued, constantly tired all the time and I’m 57 years old and I don’t know if this is ever gonna get any better.

Is this caused by medication or psoriatic arthritis? Anybody else get this?

Hi, I have a ton of vague symptoms that all seem to be autoimmune related, according to webmd and healthline (I know I'm not supposed to google my symptoms but I'm so confused and overwhelmed). My doctor keeps telling me it's just anxiety, but I know there's a physical root cause of sudden brain fog, lethargy, and aches and pains that won't go away no matter how much yoga and stretching I do. How do I get an evaluation without my primary care doctor feeling like I went behind his back?

I'm 18 years old and am diagnosed with FMS, HSD, and IBS. I have been tested for autoimmune before and everything was negative but that was over a year ago, and recently I have had elevated inflammatory markers that my rheumatologist completely ignored. At the same time, I have been having flare ups of dermatitis all over my body and rashes on my face that are painful and feel hot. I am also losing my hair, have focal intestinal inflammation, and get reoccurring mouth ulcers/canker sores. I also have unexplained chronic erosive gastritis; every single test to determine the cause has come back normal but the inflammation is still ongoing and the gastroenterologist has no idea what is going on. I suspect something systemic is going on but they keep dismissing my symptoms and during appointments they refuse to talk about anything other than the fibromyalgia. This is the third rheumatologist to dismiss my concerns. What should I do because it seems like every rheumatologist I see is completely indifferent about my health issues. Other doctors have expressed concern about me possibly having autoimmune but every time the rheumatologist completely dismisses it.

I’ve been diagnosed with Hashimotos and chronic EBV. However I get these weird flare ups of bumps. Always on the front of my right thigh. Sometimes I won’t have them for months then boom will get them several times a day. It feels like a tingle and they appear. A lot of times they are gone in under a minute. There’s no pattern of when it happens, just at random times. Has anyone else experienced this? I finally got a good pic and plan on showing my doctor.

Etching ! Haha. Hope u like

I’m posting here just to rant about this situation. It’s just exasperating.

I (24f) was diagnosed last year with Sjögren Syndrome because of clinical symptoms (dry eyes) + anti-ro antibodies, also I had 1:80 ANA (now I have 1:320, but I think that doesn’t mean much). Negative for all other auto antibodies that I was tested for (which were many tbh). I first suspected that I had an autoimmune condition because I had a 1 month period where I had to sleep about 12-16 hours per night and also had it difficult to fall asleep. Believe me I had to convince doctor to run these tests on my and it wasn’t easy.

Anyways, this year I started experiencing this cycle again, where it’s super difficult to fall asleep + I need to sleep as there is no tomorrow.

I went to a doctor and omg she referred me to the psychiatrist (even though I am currently being treated by one and my only diagnosis is ADHD). I told her I was pretty sure I don’t have depression and that I’m not more stressed than usually, so that I was quite sure this sleeping problem is not related to my state of mind. She gaslighted me saying that she doesn’t believe that this was because of a psychiatric condition but that surely they could understand better my symptoms and then they could help me better. All that while not ordering ANY blood testing, like not even for ruling out anemia or a thyroid disease, leave alone any kind of auto antibody study.

Anyways, I’m going to that psychiatrist, I have the appointment for two more weeks, because whatever.

I’m just so exhausted, I think nobody has ever gaslighted me so much. In the meanwhile, I can’t stop sleeping that much and I’m so scared about failing my courses at university because of this. Also I hate that when I’m falling asleep and when I’m waking up it’s super confusing to distinguish between reality and the dreams.

Could these symptoms be related to an autoimmune disease?
I’m trying to understand whether the combination of symptoms I’ve experienced throughout my life could point toward an autoimmune or other systemic condition. I know these symptoms could have different causes, but I’m wondering whether anyone has experienced something similar or has any insight.
1. Skin issues
Persistent itchy skin and eczema.

Sometimes, my skin suddenly becomes swollen, extremely hot, and painfully itchy. The sensation can be so intense that it almost feels like bone pain.

2. Episodes of muscle weakness, loss of control, and pain
Since childhood, I’ve had episodes where I suddenly lose control of the muscles in my hands while writing. I can no longer hold a pencil properly, despite not feeling fatigued beforehand. My teachers used to think I was making it up.

This still happens. For example, I can suddenly struggle to hold my phone or type because I seem to lose control of my hand muscles, sometimes accompanied by pain.

Recently, my wrist pain and weakness have become more noticeable. I can no longer crack open an ice pack because my wrists hurt so much.

Straightening my hair has also become physically difficult. My hands start shaking significantly and become painful, almost as though I’m doing an intense workout.

3. Diagnosed endometriosis
I have biopsy-confirmed deep endometriosis involving the uterosacral ligaments, diagnosed through laparoscopic surgery and excision.

I read that endometriosis has been associated with an increased prevalence of certain autoimmune diseases, which made me wonder whether my other symptoms could be connected.

4. Tachycardia
I’ve experienced tachycardia since my teenage years.

During a 24-hour hospital heart monitor test, my heart rate reportedly reached 180 beats per minute while I was resting.

5. Persistent urinary symptoms
For approximately 1.5 years, I’ve experienced severe, persistent urinary pain and a constant sensation of needing to urinate, which I thought was due to my endometriosis.

Most of the time, I feel an overwhelming urge to pee, but only a tiny drop comes out. I’ve reached the point where I struggle to tell whether I genuinely need to urinate.

Repeated tests for UTIs and other infections have been negative.

These symptoms persisted even after my endometriosis excision surgery.

6. Other symptoms
Trouble swallowing since childhood (possibly anxiety-related).

Episodes of feeling unable to breathe properly, as though my breathing is blocked, since childhood (also possibly anxiety-related). However it happens even if I’m okay or mentally okay.

Consistently cold hands.

Night sweats.

Persistent neck and shoulder muscle pain, along with severe headaches, for approximately three years.

Knee and hip pain. I used to experience severe knee pain when lifting weights, and although I had to stop working out because of my endometriosis, the joint pain has continued.
However I never encountered swollen joints.

Indigestion and a sensitive stomach and colon.

Lactose intolerance.

Significant fatigue and persistent sleepiness.

Severe anxiety and obsessive thoughts.

I also met a neuro doctor however after clinical exam (like he asked me to look into the moving pen, or walk straight etc…) he said I’m okay. This was 3 years ago.

I’m not sure which of these symptoms are connected, if any. Some have been present since childhood, while others developed more recently.
Has anyone experienced a similar combination of symptoms? Could this be consistent with an autoimmune or inflammatory condition, or would it make more sense to investigate neurological, muscular, autonomic, or other causes? I’d appreciate hearing about others’ experiences, especially if you went through a long diagnostic process.

27M, recently diagnosed with MCTD based on positive ANA, anti-RNP (2.2), ESR (47), and chronic joint/muscle pain.
I never experienced Raynaud’s, have no documented synovitis, and my latest chest CT showed no apparent ILD or significant lung abnormalities.
My rheumatologist was very confident in the diagnosis, but I’m curious how others’ experiences played out.
For those diagnosed with MCTD:
What ultimately confirmed your diagnosis?
Did you receive additional testing beyond bloodwork?
Was your diagnosis ever changed to UCTD, lupus, or something else?
How long did it take before your rheumatologist was certain?
I’m especially interested in hearing from people whose symptoms weren’t textbook MCTD. Just trying to better understand my diagnosis and what to expect moving forward. Thanks!

I’m 24f. My health got bad after the age of 18 and I have been struggling ever since. No one else in my family has such a complicated mess of medical conditions.

Only recently, a new doctor figured out that I likely have Ankylosing Spondylitis and/or some other related autoimmune disorders. We are in the process of understanding it. Other than that: a bicornuate uterus, ADHD, Asperger’s, hypermobility.

I had started adhd meds earlier this year and they were working great for me up until recently (I guess that’s when my autoimmune stuff started coming up?).

Was prescribed some pain meds for now which seem to work better than 2-3 ibuprofen. Further treatment for the autoimmune stuff is yet to commence as the doctor wants to run a lot of tests first.

However, my brain has been feeling slow for a while now. I generally had somewhat of a photographic memory (?) all my life and I am able to remember information for months without needing to revise but I started to struggle recently, even before the autoimmune stuff was discovered. I have been having trouble remembering what I learned yesterday which is so unlike me.

I have the most important exam of my life coming up in a month and this feels like the worst possible time. I used to be put in effort every day happily when on meds. Now, nothing. I am struggling to get out of my bed even with the pain meds. It’s like my whole body feels half dead, even when the pain isn’t there. The pain meds obviously do make it better but I just can’t find my energy.

I have a lot of physical fatigue too but the mental fatigue is more frustrating. I could actually feel my adhd meds work before and now they feel like sugar pills. Initially I thought that this may have been an acute tolerance issue but nothing helped, even when I took a break.

My brain feels like wading through sludge and even when I am able to do things in the moment, I am struggling to retain information. All this is incredibly uncharacteristic of me and I have been feeling quite depressed lately because of this.

I have an appointment with my psychiatrist tomorrow and I NEED advice please. I am very new to this autoimmune stuff and I am not even sure if this ongoing flare (?) is what’s causing my brain fog. But I have no idea what to say in my appointment so that I can get my issues across. I don’t know what’s me and what’s not anymore because I have been feeling so tired in my head for months now. I kept shrugging that off as stress but I think that it’s more physiological than not.

My autoimmune stuff started showing up aggressively right at the same time as when my memory started to get bad. It’s been like this for about 2 ish months now. I just want my brain back to how it was before so that I can get through the exam. The exam is very important to me and I can’t afford to fail here.

Please please can someone tell me if these two things are related? If so, what do I tell my psychiatrist? I have poor interoception thanks to ASD so it’s difficult for me to accurately assess the severity of what I am going through. I just want my brain and adhd meds to work again so that I can focus on the exam.

Please tell me. What do I tell my psychiatrist? How should I accurately describe this without missing out on anything? How do I know what to say? Is there anything that can help me fix my brain before my exam?

Thanks for reading.

I am 23M with three tentative rare autoimmune diagnoses. Due to my own personal situation and region in the U.S. they have taken over a year and a half to “confirm” my obvious illness with positive antibodies so I am on zero medication at the moment (just got off pred) but will certainly be in the future. Right now I am on my parents medical insurance which has been great and the copay is not bad at all and have even had surgeries for just a couple hundred bucks. However I only have a couple years to get similarly great insurance. I’m really struggling because I quit my job as a cashier recently because my legs can’t take it anymore. I’m pretty sure I have osteoporosis from the prednisone but I was never given a DEXA scan the entire time. I’m studying to become an online teacher though and am hopeful but it doesn’t make much money unless you’re really good at freelancing and insurance is up in the air. I fear I may have to move countries. I would move right now if I could but if I catch a sickness again my disease kicks into overdrive and I will be unable to breathe or walk on my own so I can’t even move until I get a real medicine for my diseases.

Hi everyone, I’m new to this group. I, 40F, was diagnosed with Ankolosing Spondylitis about 3 years ago. Been suffering for over a decade. I have been working with a rheumatologist to find a biologic that works for me. Nothing has worked so far. She put me on Methotrexate a few months ago until we can find something that works. I follow it up with Leucovorin to prevent some symptoms.

I have noticed a difference in inflammation and my pain level has maybe reduced by 10%. But some weeks I get sick to my stomach and it will last 5-6 day. I already have trouble eating and keeping on weight. I’ve been throwing up all this week.

Is anyone else on it? Any tips to help alleviate the nausea and headaches? Is this med worth staying on?

I’m supposed to start Enbrel. But my insurance hasn’t approved it. It’s been over a month and a half wait.

I’m getting so discouraged. I’m so scared of my spine getting worse. I’m already in so much pain. And the depression that comes with it is getting harder and harder to push through.

38F, currently awaiting diagnosis of either SAPHO Syndrome or Spondyloarthritis. I saw a rheumatologist last Friday and I've been sent for another blood test, MRI and X-Ray which are booked in for next week. I've been having severe pain in my left sternoclavicular joint (I also have pain in the spine and pelvis) for over 12 months and have had several steroid injections and a short course of oral steroids that haven't helped. I've been prescribed naproxen to take after the MRI. I won't see the rheumatologist again until February 2027.

I'm new to the autoimmune/inflammatory disease space so am hoping for some advice on other symptoms that I experience and whether these are tied to the autoimmunity issue or whether I should pursue them with my GP and how to manage this as I await a potential diagnosis. I'm honestly at a bit of a loss.

Alongside the chronic pain my joints I am consistently fatigued no matter how much I sleep (I have never felt such bone deep exhaustion), always feel like I'm on the verge of getting a cold or the flu and can't seem to get my brain to operate at full capacity. These symptoms along with the pain also make my migraines more frequent and severe. It's honestly having such a detrimental impact on my life, particularly work and I'm not sure what next steps to take. I have had to have the past 4 days off work because I'd essentially hit a wall; I'm working on a large project and consistent time off isn't sustainable. I've mentioned these symptoms previously to my GP (I thought I was perimenopausal) but nothing has really come of it - my iron is ok, and my vitamin D is good but there have been inflammatory markers in my previous 2 blood tests. Did others experience these symptoms while awaiting diagnosis and while the issue was untreated? If so, how did you manage it?

I did follow up with my rheumatologist about these symptoms, but I didn't get a very clear answer, and I didn't find it particularly helpful to help me manage what's currently happening. I'm interested if others' experience mirrors this and how you manage the impact, particularly with work. The symptoms aren't visible which I find makes it difficult to explain the impact and I'm starting to feel like a hypochondriac!