hey all! i’m a 32yo female who is struggling. really bad. i’m sorry but this is going to be long and i hope at least one person reads this 😔

i have been in and out of doctors after finally getting insurance about 6 months back (i know it often takes much, much longer to get a diagnosis for some) and i just feel so dismissed. i’m not sure if what i’m currently dealing with is even autoimmune, but i was diagnosed celiac 2.5ish years ago and i know it’s common to have multiple autoimmune diseases. so i figured it’s likely that what i’m experiencing is also autoimmune.

i’ve struggled with fatigue and full body aches for a couple of years. i was in active cocaine addiction so i chalked it up to that and just recently having gone gluten free. but, now that i’ve been gf for about 2.5 years and sober for 7 months - things have gotten worse. much worse.

in addition to the unspecified body aches and extreme datugue, i started to get pain in my legs, feet and hands - it seemed like my joints. then they started to puff up and get stiff as well, mostly in the mornings. i got an ana done at my pcp and it was low positive at 1:80 with a homogenus pattern. i went back to my rheumatologist (from when i was diagnosed celiac) who did a few tests and ultimately diagnosed me with seronegative rheumatoid arthritis. at the time i was fine with that diagnosis. she started me on hydroxychloroquine. they also noted osteoporosis in my hands.

less than a week later i ended up in er. i had horrible pain in my left leg, my left foot swelled up, burned and turned bright red, i got dizzy, nauseous and my chest hurt. they checked for a dvt and i was cleared. got a referral to cardiology because my ekg was “weird” as they put it. the bloodwork showed 1.4 absolute eosinophils and low potassium. they found minor s-shaped lumbar scoliosis. they diagnosed me with anxiety and muscle strain (it was so far from a muscle strain - i was very upset) and sent me home.

from there, i saw a new pcp (because of some stuff in the past w my prior one) and got repeat lab work. everything was back to normal. but a few days later my right foot swelled, turned red and burned and my right leg hurt. none of the other symptoms, though. over the next week it began to happen to my hands as well, but they weren’t swollen so much as the skin was tight? if that even makes sense? i also started to get chest and face flushing and random rashes on my body.

the next month is kind of a blur, i don’t remember exactly the order my symptoms manifested but i will list them: tingling in my hands, feet and legs. headaches (sudden, intense and fairly short lived). fluid in ankles and calves & swelling with pitting. random bug bite like bumps, usually isolated but up to 4 clustered, that leave behind purple marks (on my thighs, butt and stomach). diarrhea, constipation and nausea taking turns. feeling like food gets stuck in my chest. shaky vision (feels like my eyes vibrate?) (this has only happened maybe 3 times, but it’s freaky). mouth sores (always have gotten these but now i always have at least one). left knee cramp that lasted over 24 hours. patches of unprovoked isolated goosebumps, that i then realized i could trigger by touching my arm and it would ONLY goosebump where i touched. very itchy skin, randomly, at night is bad and after showers. bruises of unknown origin. shortness of breath and exercise intolerance. chest/neck/face flushing (one instance of what i believe was malar). dizziness (upon standing but also randomly and once after eating). random flushing/hives on various body parts.

i started researching and got worried i had DRESS so i contacted my rheumatologist and she said i can stop if i want, but she doesn’t feel it is. i stopped it anyway in hopes i could feel better.

then, on september 2nd i had the worst case of my foot pain/redness/burning ever. i sobbed myself to sleep. the next day i couldn’t wake up. i was slurring my words. couldn’t do anything. i called my mom crying and she came to see me. said if i wasn’t better the next day she’s taking me to er. (i was reluctant because i lost insurance for a few weeks switching jobs) well, i wasn’t better. so she took me in. i barely remember it. they basically said they have no clue. labwork was fairly unremarkable aside from having ketones in my urine and a low tsh (but normal t4). my uncle and mom both have autoimmune thyroid conditions so we thought maybe we were onto something with this finding.

went back to my pcp and explained all these new symptoms. she didn’t really address any, just noted that i was underweight. which i am. i’ve always been thin, but dropped quite a bit in the past month. which was another concern i brought to her. but she ordered a holter and echo. it was very unproductive imo.

after that, more symptoms began: random temp spikes (not fever but like from 97.6 up to 99.8 in a minute, then back down to 98 in another minute). major decrease of appetite and when i could eat, early satiety. occasional night sweats.

went to cardio and my heart has some abnormalities but they were unremarkable findings. got a tentative pots diagnosis - tilt table test in january. started on metoprolol.

now in the past couple weeks, more symptoms have started. i got a round, light pink and wrinkly lesion on the inside of my elbow. my nails have dents in them horizontally that i just noticed. they have ridges vertically. and i have what appears to be called “terry’s nails”. my nail beds become very red and inflamed and when i use my camera to look up close i can see spider veins below my cuticle. my lip line has blurred and there are spider veins along where it used to be. i have 3 mouth sores. a lot of my hair follicles on my legs are inflamed and those hairs fall out easily.

i got more lab work done and it was mostly unremarkable at first glance. aside from my nt-probnp which was high, but cardio thinks it’s fine? but upon looking closer, i see some concerning trends. my rbc were a little low which was flagged, but also my hemoglobin and hematocrit dropped significantly. my wbc are trending down. despite having slightly elevated eosinophils again. my b12 shot up (no diet changes). my ferritin went up (again, no changes) but my iron panel results dropped? my creatinine, albumin, total protein, globulin and alk phosphate are all trending down pretty fast. also, my tsh, t4 and t3 were all normal? which was surprising considering my family history and prior results.

my doctor said everything’s fine and that the trends i’m seeing don’t matter essentially, since most are still within range. i just, i don’t know what to do guys. something is wrong and i can barely function day to day with the pain and fatigue and at least one symptom happening constantly.

if anyone has recommendations for what to do, what tests to request, etc. please help!

i can attach pictures if anyone reads this and feels it may help. thanks so so so so much to anyone who made it this far 💖

Hi everyone. I was diagnosed with UCTD and RA about 3 years ago. I had my first major flare earlier this year, and I'm still trying to find a new normal between life and medication changes.

I've been having this ache in my legs since my first flare up. When it happens, I feel it in my calves and thighs on both legs. It doesnt feel like a typical muscle ache. It feels much deeper. The only way I can describe it is that it feels like my muscles are being torn apart steadily and they feel very tired as well. The ache can last for days at a time.

Has anyone else dealt with this? Does anyone have any recommendations for dealing with it?

I've tried OTC pain meds, compression socks, massages, warm baths. I have to spend most of my time in bed to recover. But it's impossible to be comfortable while it happens. I only can sleep if I'm feeling exhausted and it's only for a couple hours. I would love if someone could suggest some way to feel more relief.

I took for 2 days and on the third day, felt as if I was coming down with a very bad flu. Doctor said to halt and we will talk about it in a week or so, and see how I'm feeling. Pharmacist said it probably interfered with my immune system fighting something I already had. Has anyone else ever had that happen?

now i am in medication

i feel like iam dying

joint pain and low back pain as well as enthisitis

my mental health also is dying

i can't study

Hey guys, I’m posting because I’m genuinely at breaking point and hoping someone here has experienced something similar and can tell me there’s light at the end of the tunnel.

Earlier this year, during my pregnancy, I was prescribed 25 mg of prednisolone daily for approximately 10 weeks due to a complication. After birth they tapered me over 3 days, my last dose was mid April.

I stepped on the scales 2 weeks postpartum to find I had only gained 5kg in pregnancy. I had been running and training throughout my pregnancy and was happy with this as I had to start training again for a race I already committed to prior.

Then it all started…

End of May I experienced a rapid and significant weight gain, of 11 kg in just 2.5 weeks. I didn’t experience an increased appetite or feel that I was eating more than usual. I had gastric sleeve end of 2024 so am already limited.
It’s now been approximately 6 months since stopping the steroids, 5 months since the gain and I’m still struggling with my weight and foot pain upon waking.

My symptoms have included:

- Significant facial puffiness, particularly around my eyes
- Swelling in my hands, abdomen and legs
- A buffalo hump around my upper back and neck
- Abdominal weight gain and changes in body shape
- Joint pain, stiffness and fatigue
- Weight fluctuations of 3-4 kilograms within a day
- Clothes and rings fitting differently depending on the day
- High blood pressure which I’ve never had previously that I’m now medicated for.

I’ve seen an endocrinologist regarding the possibility of Cushing’s syndrome or steroid-related Cushingoid changes. My 24-hour urinary cortisol came back normal, and I’ve also been referred for a dexamethasone suppression test.
I’ve been told it could take up to a year for my body to recover from the steroids, but I’m finding it increasingly difficult to understand why this is still happening. The endocrinologist didn’t seem too concerned and every GP I’ve seen treats me like I’m just some postpartum mum unhappy with her appearance which is simply not the case.

I’m currently training for an Ironman, so I’m swimming, cycling, running and strength training throughout the week.
Despite all of this, my weight has been incredibly stubborn, and the fluctuations have been crazy.
Some mornings I wake up feeling considerably smaller, and then the next day I’m swollen again. I’ve seen my weight change by several kilograms in very short periods, which makes me question how much of this could be fluid.

I feel like I’m doing everything I can to improve my health, yet my body isn’t responding.
I’m starting to question whether this really is related to the steroids, whether something else is going on, or whether I’ve simply gained a significant amount of fat despite my efforts because that is how GPs have been treating me despite me knowing this is not physically possible in that short time frame.

I feel completely defeated and honestly just want my body back. I’ve never had aches or pains prior and have felt very lucky in terms of health. I’m 35.

I’d really love to hear from anyone who has experienced something similar:

1. ⁠Did anyone experience significant weight gain after prednisolone, particularly without an increase in appetite?
   
2. ⁠Did you continue to experience swelling, Cushingoid symptoms or weight problems for months after stopping?
   
3. ⁠How long did it take before your body returned to normal?
   
4. ⁠Did the weight eventually start coming off, or did you need additional treatment?
   
5. ⁠Has anyone had normal cortisol testing despite continuing to experience symptoms that looked like Cushing’s?

I’m not looking for a diagnosis. I’m continuing to work with my doctors. I just desperately want to hear from people who have been through this and recovered.
At this point, even knowing that someone else experienced this and eventually improved would mean a lot.

A study of more than 6,600 people with autoimmune conditions found a clear gender difference in how symptoms were interpreted, with women more often reporting that their symptoms had been attributed to psychological causes.

Did you have trouble getting diagnosed or were your symptoms ever attributed to stress or psychological causes?

Anyone know a good pain specialist in Chicago?

My wife's reuhm would like her to try LDN in place of pregablin which she is currently on. However, he wants her to see A pain specialist to do this and he won't prescribe it himself. He did not have a doctor to recommend and she does not want to take steroids or opiates before trying LDN. Does anyone know a good pain specialist they could recommend? Our insurance is United Healthcare.

Side note: we do know agelessRX is an option, but she really prefers having an person doctor she can have established continuous access to.

Hey guys,

I heard from my doctor this morning that I tested positive for HLA-B27 & that I need to make a doctors appointment ASAP. I have been spiralling about it all day. I'm a 25 y/o F & since my teenage years I have always dealt with back pain here & there. Over the past few months my lower back has been chronically sore, along with pains in my pelvis & the sides of my lower stomach. These pains are what made me see a doctor. After my second opinion she ordered bloods to be done, low & behold this is what came back. I have relief to know what it is now (sorta). I have been going to physio once a week before this result & it wasn’t really doing anything. I’m wondering if I should still go?

I know I am going to be so anxious for the lead up of my follow up appointment, so any guidance of what this process looked like for you would be greatly appreciated. I'm reading about MRI's chronic pain for the rest of your life.... I know I shouldn't be googling. I find solace in other peoples experiences so any guidance would be such a relief <3

Edit - I also do ceramics/pottery. It's my most fav thing to do and this is greatly impacting my mental health :(

I was recently diagnosed with pyoderma gangrenosum after months of worsening abcesses and would turn to deep ulcers which never healed. I ended up having to get surgery and of course the issue spread there. Some are suoer deep and big, others are smaller. Thankfully I got referred to a dermatologist who has dealt with this disease before so she knew what I had straight away.

I've been in hospital for a week now on oral ciclosporin, intravenous dexamethasone and minocycline pills. They've helped reduce pus and inflammation a lot already but I know this will be a long process.

Anyone here with this illness who has managed to heal their ulcers and go into remission? How long did it take? How is life after healing?

Hi everyone,

I'm curious about the general experience people here have had when trying to figure out their specific HLA alleles (like HLA-B27) from raw consumer genetic data or whole-genome sequencing files.

From what I understand, standard consumer chip tests often lack comprehensive coverage of complex HLA loci, while standard bioinformatics tools usually require Linux or command-line experience.

I have done that myself, and it wasn't trivial. Did any of you try to look up your HLA status from raw files as well? What were the biggest technical roadblocks or limitations you ran into?

I have spent over two years at every specialist in the book (and more to come) trying to resolve my symptoms. They are very classically lupus but my blood work doesn’t support the full diagnosis. So my rheumatologist decided to treat with frontline lupus meds (plaquenil) and if I do well on that then she’ll confirm as UCTD. She still wants further MRIs and CT scans to be 100% sure it’s not something else but I just can’t afford it all so that will come. I know that UCTD is a very real diagnosis but it feels frustrating to me all the same because that is so much harder to explain and still just as miserable as the more well defended diseases. I already have organ involvement but it’s not severe so it’s like an awkward middle ground.

I’m thankful for a doctor who finally listened and is actually treating my symptoms, not just passing me to another doctor but I still can’t help but feel disappointed. Which is not what I was expecting to feel! And I hope I’m not alone in that!

Hi everyone,

I'm a teenage boy with retinal vasculitis and posterior uveitis (all tests negative, treated as autoimmune). I started prednisone 3.5 months ago at 60 mg and I'm now at 30 mg, tapering 5 mg every 2 weeks.

It's working: after a hemorrhage in my eye, my vision went from counting fingers to 20/25.

But the side effects are wearing me down. My face and body have changed, I'm always hungry, my mood is all over the place, and I feel insecure about how I look, especially at school. I really miss who I was before..

I'd like to explore steroid-sparing options, but my parents don't really understand that alternatives exist, and I'm not the one making the decisions.

- I'd love to hear your experience, whether it's about treatments, side effects, or just how you got through it.

Thank you for reading .

Hey I (24f) have Sjögren’s Syndrome and although I always have had borderline low blood pressure (around 100/75-80), the last few years I started having even lower and lower blood pressure.

For instance, a few months ago I had 89/46 and a few days ago I had 88/45. Both occasions without any symptoms, and measured while sitting. Both times the doctors were surprised, and asked me if I was an athlete (which I’m not, lol, I’m even a little overweight). Last time the doctor double checked it and then made me stand up and tried to measure it again while standing up, but the monitor didn’t work twice, so she just gave up lol

She asked me if I had experienced dizziness or feeling like fainting when standing up and no, I haven’t, but sometimes when I stand up I can’t see for a few seconds (my vision turns black), it has never bothered me and she didn’t seem worried either so I don’t really care

The thing is, I never realized how low my blood pressure was until now hahah, does anyone have such a low blood pressure without experiencing any symptoms?

So I just had my first rheumatology appointment yesterday and I’m not sure what to think. I had a positive Ana with centromere antibodies this May. Antibodies were on the low side of 2.8. I’ve had various skin issues and digestive issues pop up since the test. The Dr ordered a few labs to figure out if Mcas was causing my hives. I asked if, regarding the antibodies, we should get a baseline echo and pulmonary function test. She said since I had a recent ct scan of my chest she didn’t think it was necessary. I have raynauds and my toes were cold and purple in the office, so I’ll be starting nifedipine for that. I’ve also developed GERD which I’ve never had before the hives started. She thinks they’re related to Mcas. My problem is she barely looked at my skin, didn’t do a nail capillaroscopy, and told me we’d only pursue additional testing if symptoms worsen. Does this seem reasonable?

A few days after starting zoloft I had my worst flair up yet. Has anyone else experienced something like this, or is this simply a coincidence in timing? Things have calmed down since, however I am upping my dose here soon and I’m worried it’ll cause another massive flair up.

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.

Etching ! Haha. Hope u like

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.

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 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.

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.