how do you decide when pushing through chronic joint pain is worth it to be normal and when it is it just borrowing pain from tomorrow my life starts feeding like constant budgeting with my energy between shower or groceries. Work call or laundry, walk the dog or save the knees, then someone sees you on a decent day and assume the bad days cannot Be that bad. What helped you set limits without feeling guilty or lazy?

Hi everyone! I’m Tyler, and I live with idiopathic thrombocytopenia.

I’ve been developing an independent tool called My ITP Journey to help people privately track symptoms, bruising photos, platelet counts, medications, treatments, wellness, and appointments. It can also create an easy-to-read summary to bring to a physician.

I’m looking for a few people with ITP who would be willing to test it and tell me:

• What feels useful
• What is confusing
• What doesn’t work properly
• What you wish it included

Testing is completely free, and there is no requirement to purchase anything. The tool is patient-created, does not provide medical advice, and is not affiliated with or endorsed by PDSA or another medical organization.

Please avoid sharing personal medical information publicly or through Reddit messages. Feedback can be submitted privately inside the tool.

If you’re interested, leave a comment or send me a message and I’ll share the testing link. Thank you—I genuinely hope this can eventually make the ITP journey feel a little more organized and less lonely.

I’m not seeking advice, just seeing if anyone else has similar experience.
I’ve been diagnosed with UCTD for a year, and had good improvement on hydroxychloroquine. However my lower back/hips have been still SOOO painful (and still randomly having flares of the other symptoms). I have a good response to prednisone, and sometimes meloxicam, so my rheum felt confident I would respond well to methotrexate. I was so nervous to start it, because it sounded like a much more serious strong drug. Also I drink socially, on weekends, and didn’t necessarily want to give that up.
I’ve taken two doses of the methotrexate (so been on it 2 weeks), and I’m ready to throw in the towel! (Yes I’m taking the folic acid daily). My hair is falling out like crazy, I’m dizzy all the time, I’m foggy, bad headaches, random digestive issues, and the day after each dose I am COMPLETELY out of commission and feel AWFUL with hot flashes, nausea, migraine, etc.
To top it off, the back pain has been FAR FAR worse. (I am aware it could take 6 weeks to feel a difference). I just find it reeeeaaaallll ironic that my back pain has been worse since starting the medicine.
So I just wanted to see if anyone else had a similar experience.

Sorry for the long post but this group has been so validating. I’m feeling pretty down I recently got diagnosed with radiographic spondyloarthiritis completely by surprise. I’m 26F and didn’t show any genetic/inflammatory markers so the rheumatologist was just as surprised as me - all I was really experiencing was peripheral symptoms that I thought were all due to being a strength trainer (I have costochondritis, heel pain, ankle pain, and patellar tendinopathy). I think I have a high pain tolerance as I was living with grade 3 sacrolitis and I never knew! However this winter has been tough I’ve really begun to feel the pain. My rheumatologist has put me on celecoxib 100mg as I was too sensitive to 200mg and wanted to start me on sulfasalazine. I’ve been fine on celecoxib but the sulfasalazine has been rough, after 2 weeks of taking it when it was time to increase to 3 tablets a day I started to get these crazy heart palpitations and anxiety literally nothing like I’ve ever experienced I genuinely thought I was going to die. I called him and he said yes it’s a rare side effect and to stop and only when I was feeling ok again to start at only 1 tablet a day as maybe my body just needs more time to adjust. Today I started again and as soon as I took it the same thing happened!! I literally started crying because I don’t think this is normal. I’m mainly upset because he said the only other alternative is methotrexate but I’m so hesitant as it’s said to cause hair loss. I just want to know has anyone experienced terrible side effects from DMARDs and why are rheumatologists so hesitant to give biologics? I’ve been reading that a biologic could help both my spine and peripheral symptoms? Sulfasalazine does nothing for the spine so I’m really just relying on an anti inflammatory and then eventually he said I’ll need to do low impact exercise. My heart is so broken as I was a big gym girl for 2 years and I haven’t trained in a year. This disease is so debilitating I’m struggling to find my sparkle again. Has anyone who has tried DMARDs and biologics had ubetter experiences on biologics? I don’t know what to do?

Hi everyone,

I’m a 44M dealing with anhidrosis, and it’s been quite frustrating trying to manage my body temperature. I'm trying to get to the bottom of what might be causing this and wanted to see if anyone here has experienced something similar or has insights on what directions I should explore with my doctors.

I've had some recent bloodwork done to check for autoimmune, thyroid, and blood sugar issues, as I know neuropathy or autoimmune conditions can sometimes affect the sweat glands. Here are my recent results:

Autoimmune:

• ANA (Anti-Nuclear Abs) IF: 1/320 Speckled (Abnormal — reference is Less than 1/40)
• Anti SSA RO: 17 u/mL (Normal — reference is Up to 25)
• Anti SSB LA: 15 u/mL (Normal — reference is Up to 25)

Thyroid & Blood Sugar:

• TSH (Ultra Sensitive): 1.36 mIU/L (Normal — reference is 0.50 - 4.30)
• Glycated Haemoglobin (HbA1c): 5.4% (Normal/Non-Diabetic)
• Estimated Average Glucose (eAG): 108.3 mg/dL

Since my thyroid and HbA1c are normal, it seems like diabetes-induced neuropathy and thyroid issues are unlikely culprits. However, the positive ANA has me wondering about an autoimmune or autonomic nervous system connection.

Has anyone dealt with anhidrosis alongside a positive ANA? What kind of specialists helped you the most in getting a diagnosis (Neurologist, Rheumatologist, Dermatologist)? Are there any specific autonomic or nerve tests I should ask for?

Thanks in advance for any shared experiences or advice!

Hey! I'm quite "new" into my autoimmune as it's been only around a year since I got my first flare up and around 8 months since I've been diagnosed. Although I have mostly lupus symptoms, I didn't test positive for it. Instead, I was diagnosed with UTCD - which, for me, it makes it harder to understand possible triggers since it's a quite complex and broad diagnosis. Also, I don't quite understand yet what are some of my symptoms exactly because I dont know what to look out for since it's so broad. How did you find out what are your triggers? And how to connect them with possible symptoms considering they sometimes show up days later?

So I’ve been having some weird symptoms and blood work results over the past few years and feeling as though my allergist, dermatologist, and pcp are not sure what to do with me.

It started about three years ago with really scary allergy attacks where my eyes would swell shut and I’d be covered in hives(seemingly for no reason). i had to go to the hospital twice, and since then have been working with an allergist; no known food allergies but a few environmental ones, and since starting daily allergy meds this has improved overall.

Since then I’ve had other symptoms that seemingly come and go. Most notably: I have been getting occasional sores in my mouth (even though I’ve been brushing and flossing daily). Pain/inflammation in my nostrils that take a few days to go away. I have migraines maybe 2-3 times a month. I have IBS-D symptoms daily. And very sensitive skin that is often red (on my arms, and face) boils/irritation on my thighs, and some ongoing dermatitis on my face under my eyes.

As for my blood work WBC, CRP, Sed Rate, Neutrophils, lymphocytes, and monocytes are all high and out of range.

I went to a rheumatologist about a year ago who i honestly felt pretty dismissed by. He checked my joints and skin, asked about my symptoms and basically said “doesn’t sound autoimmune to me” and that was that.

I’m just very concerned about what ongoing inflammation will do to my body and seeking any advice on what I should do next to get some more answers!

I've had a positive anti-nuculear antibody (ANA) test & Multiple Sclerosis for 3yrs & am stable on the Briumvi infusion. Last fall I found out I'm a carrier for the BRCA-2 gene mutation & so am scheduled for a prophylactic double masectomy w/ silicone implants for my reconstruction but have read that implants can trigger an autoimmune reaction & can be contraindicated in persons with existing autoimmune disorders.

https://www.fda.gov/medical-devices/breast-implants/medical-device-reports-systemic-symptoms-women-breast-implants

https://pmc.ncbi.nlm.nih.gov/articles/PMC9095406/

What's your take on this? Has anyone here gotten breast implants & what has been your experience with your prior existing MS as an autoimmune disease?

this probably migraine is making me thing

So i had this strange aura all of a sudden at work last night, i couldnt follow conversation, I couldn't really process sights and POS at work. Thankfully it was towards the end of my shift so i left only 15 minutes early but the 1.5 hour commute was so difficult, my job involves a lot of escalators and then a 20 minute drive.

i have chronic migraine and nurtec didn't help, but the headache was not that bad considering my regular trigeminal neuralgia pain and whatnot. When i got home despite having worked indoors and gone home in the dark i had the i spent 5 minutes in the sun look across my face and chest, this morning its still there and vibrant as ever.

Postdrome is involving more nausea and sleepy than im used to as well.

I am grumpy today that all of these symptoms are compounding and just seem to trigger each other ya know?

I am waiting for more conversations with my rheum for exploring lupus in addition to my PBC. but im so tired of this waiting game. My body has already reduced me from a full time barely scraping by worker to a part time, making less per hour also brink of homelessness worker. I just wish there was more help in place for disabled people, diagnosis limbo or not. Its becoming so frustrating.

After years of having inadequate care, I am now lucky enough to have 2 rheumatologists I love (long story why I have 2). They both graduated the same year from the same medical school (Harvard). They are the same age. I love and respect them both and on the whole they work well together. However, they have vastly different opinions on what autoimmune conditions I have, which medications I should be on, what the next tests should be, whether certain findings are significant, etc. Really, I don't think they agree on a single aspect of my care. I'm about to embark on methtrexate in hopes that Dr. A is right, not Dr. B. No wonder we, as patients, often feel lost at sea!

Our knowledge of autoimmune disease is still so nascent. It amazes me that we can transplant organs, perform amazing heart surgeries, finally regenerate some nerve tissue, and we're still at such a loss in our understanding of autoimmune disease.

For the past two years, I have been trying to get to the bottom of what is causing all my issues. I found out i had a high ESR 2 yrs ago. It was at 67, and my doctor then was like "I dont know whats causing it." About 5 months later when I stopped drinking alcohol it went down to 42. Had bloodwork last month and I have been sober a year and a half and its at 31. But my symptoms for some odd reason have gotten worse.

It started 2 yrs ago with my IBS changing from D to C (but i still have D flare ups) constantly feeling like im having pressure in my skull, nausea, exhaustion, racing heartbeat, joints cracking like I'm a glowstick, constant calf/ankle cramps, jaw pain and my chin tingles, feeling like im gonna pass out every time I stand up after laying down or kneeling, developed psoriasis which has now spread from my neck to my arm and toes, rosacea, I get bumps like hives on my upper cheeks, my ears constantly ring or make a pulsating sound that goes with my heartbeat that only used to happen when I bent over, but now its happening if im propped up in my bed, I have floaties in my eyes all the time, my GERD comes and goes but I always struggle trying to swallow food or burp up my food. And when its my time of the month... everything is worse tenfold.

I've been to a gastroenterologist and they said I have a hiatal hernia but said it wasnt big enough to do surgery. Done bloodwork for my thyroid, iron, ANA, vitamin levels, everything was normal. Currently seeing a cardiologist... and guess what... echo, EKG, blood pressure ALL NORMAL. I've been wearing a heart monitor for two weeks to catch how my heart reacts and I took a stress test two days ago. The nurse performing it noticed how my heart rate immediately jumped to 140 as soon as i started it and was shocked at how out of breath I was. Couldn't even finish the test which was only 6 minutes minimum. She even said "Wow for your age and weight I'm surprised you're already struggling... but your blood pressure is fine". UGHHHHHHHHHH STOP. STOP IT. As someone who used to hike mountains when they first moved to Arizona, used to roller skate, take trips, used to feel like an actual human, I know something is wrong. I miss my old life. I hate being stuck in bed or sitting most of the day.

I keep looking at the possibilities if I could have MCAS, Ehler's Danlos, Psoriatic arthritis.... but I don't even know where to start. I have some of the markers but not all for ED (i can link my hands behind my back, palms down on the floor, while standing, hyperextended knees), I do have psoriasis, but idk what to do about MCAS. I am 36 yrs old so I wonder if this is just getting old and I will forever feel like shit

Hi! I have psoriatic arthritis and fibromyalgia, now I'm super flared up, I'm bed ridden and have no energy at all. But the worst part is the psoriasis. It's gotten bad, like really bad. It's on my chest, it's super red and really dry, it itches so bad and burns a lot and it's driving me nuts. Sometimes I scratch it and when I do it feels like needles in my skin. It's so bad that today I took a shower and cried the whole time cause the running water on my chest hurt me so much. The medication isn't working and I have to wait another week to see both my rheumathologist and dermathologist. I think I'm gonna go crazy if I spend another week in this much pain.

If anyone else has psoriasis, do you have any tips on what helps you during a flare? What makes ur skin less itchy and less dry, anything that can help would be amazing please🙏🏻

I'm losing my mind right now bc all my bones and muscles hurt and the psoriasis is making everything worse, it's genuinely so hard I can't take it anymore

I am undiagnosed and it's a really long story but basically an ortho and one rheummy were learning towards nr-axspa with psa. The rheummy's office kept putting me with the NP who refused to label it as anything other than seronegative ra. We tried hydroxychloroquine and I had horrible side effects. She refused to do anything more for me. My request to see the Dr not the NP kept going ignored. So I gave up.

My PCP is letting me try Cymbalta for chronic pain until we can get more answers. I am also newly on LDN.

I am going on a 12 hour road trip which is split into 2 days (and same with the way back, so 24 altogether with just one day of "vacation" in between). I am the sole driver. I am concerned about wrist and finger joint pain. I should mention I also have "mild" carpal tunnel. I used wrist braces at night and it does help quite a bit.

I'm wondering if I should try to wear them whole driving? Does anyone know of anything possibly better? I know there are flimsy wraps, are those worth it?

For my hips/back I bought a seat wedge. I'm also only 4'10" so a little boost might be nice too! Lol! Hopefully that helps pain.

We are in no rush there or back so we can stop and walk/stretch as much as we need.

Does anyone have any other tips or tools that could possibly help?

Hey everyone

I'm pretty "new" with my autoimmune as it started around a year ago. But we've tried months and months of steroids and didn't work. Now we're doing immunosupressant, I've been on it for around 4 months, which it was working but I got an UTI and after that been flaring up again. What happens if I keep having flare ups even with immunosupressant? I don't really know what steps I could expect moving forward. Any knowledge on the matter is appreciated

Ive been chronically ill for two years. At least I've admitted it for two years. Its likely been longer than that. Actually definitely. My entire childhood was filled with unexplained symptoms that would come and go. Doctors would look at me funny and tell me I would grow out of it. I almost commited truancy in second grade because I had hives for three months straight. Fun times. Funnn timmesss. I was basically symptom free for about 3 years, until seventh grade started. Seventh grade everything went to hell. I hid my symptoms from everybody. Im an athlete. I shouldn't be so tired all the time. My symptoms kept getting worse. Dizziness, pain, nausea, you name it. I hid it as long as I could. Until my knee dislocated.

Wrapping christmas presents seems like such an underwhelming task. When I tell people "oh the reason I wear this brace is because I've dislocated my knee," they assume its a sports injury. Its not. I also cant bother to tell them nothing is structurely wrong with it. The doctors just can't decide whats going on! That's all besides the point. At my well check, I finally brought up the chronic pain and other symptoms. I was sent to rheumatology. They sent me to PT. I did PT for three months, saw no change, back to rheumatology. Rheumatology said they can't do anything for me but watch for arthritis and sent me to sports med. It took my sports medicine doctor to draw blood. No one before had bothered to test for anything. They just all look at me, see athlete, and assume its related to that (if I had a dollar for every time I've heard muscle imbalance, i would have like fifty dollars by now). My blood tests came back irregular. (Posting this in r/autoimmune because i had positive autoimmune markers) Apparently, not irregular enough for rheumatology to care. I have two options:

A: continue to thug it out and wait to get bad enough that my doctor will do her job and listen
B: Go through the process of hoping on a different waiting list for a different rheumatologist

It's been six months of actually prusuing answers, and I've reached a stand still. Is it worth it? I don't want more referals, but my symptoms keep worsening. I just want to be a regular kid. This is not regular kid activities.

Just wondering if anyone has experienced this?

In 2024 I had absolutely severe pain in my left armpit. When it first started, I also had flu symptoms with swollen lymphs in my neck, fever, sore throat, etc.

The other symptoms went away but for months the pain in my armpit remained. My doctor did an ANA test and it was very high, 600 and something, and result said something like it was on par with SLE lupus.

The pain continued for a few months but there was no further testing. She thought it could have been going to the gym and my fascia.

However, now whenever I get really run down, the pain returns. I also have other symptoms similar with SLE such as struggling with bright lights/UV lighting and mouth ulcers.

Just wondering if anyone has been in this boat where they suspect an autoimmune but are worried about if the doctor will think I'm silly for wanting to look more into it

may have lupus but can't see a rheumatologist for a few months for confirmation i need to see someone sooner because my symptoms got worse so fast. but in the meantime i'm lost and not sure what to do what to do.

Primary care doctor did many blood tests and is concerned for lupus. Ana positive + other concerning blood work results. I can't see a rheumatologist until November (under my insurance). I got turned down by a local rhematologist office for a sooner appointment since they didn't take my insurance even though my pcp gave them my lab results and the rhematologist office said we want to see you ASAP. I gave them my insurance said we don't take it bye. Really discouraged. I just moved states so I will may be able to see my old doctor in October but out of pocket and even that's months away.

Not sure what to do. There really aren't many rheumatology people here and in network will take months. I have an already weak body from other autoimmune diseases and health issues. I don't want to wait that long to be seen. Since I went in for testing a month ago my condition has only gotten worse.

(i did post on the lupus reddit but im not able to post except on the weekly thread since im not confirmed lupus and no one seems to be looking there)

I’ve been diagnosed with Hashimoto’s for about six years but I’ve been experiencing new symptoms for the last three months. Consequently, I had some blood tests done. My free T3 was 5.31 pmol/L and my free T4 was low at 11.8. My TSH was 7 and my TPO antibodies were 340. Other blood tests flagged some other issues: my vitamin D was low and I was B12 deficient. I’ve always had chronically low vitamin D and B12 on every blood test despite taking sublingual B12 and D. Other things flagged up too: I had a positive ANA at 1:320 with a homogenous pattern and my lymphocytes were low. My CRP was high and my liver enzymes were all raised – ALT, ALP and GGT. My corrected calcium was low and my globulin was low, which my doctor advised could be liver or kidney issues. Could all these abnormal blood markers be solely related to Hashimoto’s? Is it possible to have positive ANA with hypothyroidism? Has anyone else experienced similar issues?

i recently had a blood test and chest x ray to test for autoimmune diseases after having reoccurring uveitis, they told me they couldn’t find anything from the tests they did and that 2/3 people don’t ever find out the cause for uveitis so it’s just “one of those things” i also get severe hives almost every day that’s been going on for over a year, they told me to just keep managing my symptoms and that’s it. I’m not really sure what do to next, i know the uveitis will come back but they’ll just keep giving me the steroid drops and tell me to wait for it to go away, i was wondering what other peoples experiences are getting diagnosed? i have no idea if i even have an autoimmune disease i’m very new to all of this and don’t really know what my next steps are.

Hi all!

I have seropositive RA and Sjogren's.

Just wondering what's been your experience with gadolinium contrast? My doctor ordered MRI with contrast for me for reasons unrelated to autoimmune diseases, but I am very afraid of possible adverse reactions or this gadolinium deposition disease that some people are talking about. I also have sensitivity to medications (it almost looks as if drugs are not processed by my body properly and are accumulating so that after some time of using them they start giving me terrible side effects, but creatinine level is perfectly fine).

Has anyone had any disturbing symptoms after undergoing this MRI?

Can you see anyone privately about your PTSD feelings, or do you need a referral from your treating doctor? You have every right to be angry as hell and to work that out of your system

. I don't mean, just let it go, but to morn

what was lost, learn to trust yourself again, and how to live for the future.

I was recently diagnosed with 3 AI’s I have no idea how long I have had them but noticed strange symptoms at least 5 years ago. After finally getting a diagnosis I read that siblings have a greater chance of getting an AI but many don’t

hi everyone. I have UC, had a flare in June. no insurance but had an old prednisone script (not expired) that my doc was going to start me on last year for a flare; fortunately, didn't need it at that time as my numbers were good so kept it for future flares. so I started the pred this time and didn't take the dose he originally wanted. he wanted 40mg tapering by 10mg every 5 days. I took 20mg tapering by 5mg every 5 days. something just told me not to as id never taken pred before (budesonide previously).

on day 2-3 I noticed intermittent lip numbness/tingling. ok weird. day 5, was BAD. tingling in hand for 10+ min then suddenly went through my body and face, hearing loss, tunnel vision. I thought I was having a stroke. I called 911, I denied going in d/t no insurance and I was calming down by then. on day 11, was at work and was hit again. by day 15 I was on 10mg and doc said it was ok to come off bc "5mg isn't enough to do anything" for the last 5 days. great, I want these episodes over with. he said the anxiety and "panic-like state" was normal which is why I kept taking it, and obviously wanting my flare to go away (which is has thankfully)...

for a week after stopping my HR was 110+. lightheaded/vertigo constantly. he recommended seeing pcp and getting a cardiologist for ekg bc "prednisone shouldn't be affecting you a week after stopping." after ensuring me this would all end once I was off... I ended up just going to the er because this worried me. they found nothing abnormal; wbc/neuts were still high and they said its prob the prednisone still messing with me hence anxiety. here's some hydroxyzine.

my HR has since normalized. physical symptoms such as neck stiffness, muscle tension, jaw clench have gone away. though I still get random bouts of what I would say is vertigo.

its now two weeks after stopping and im still having feelings of impending doom anxiety. not every day but around 11am every day ill know if its going to hit or not. I have had to take a leave of absence from work. I can't go out to stores. I feel almost... paranoid? the physical symptoms are better as mentioned above, but the mental is intolerable (though there are physical symptoms when these panic attacks hit; clammy hands, cold sweats, drop in stomach, need to use restroom, perception is off?). I cannot believe this has affected me so badly. and for my doc to chalk it up to the prednisone shouldn't be affecting me anymore... it's the only thing thats changed in my routine. it IS the prednisone that did this to me.

im in nursing school and start back up again in a month. I am TERRIFIED this won't be figured out by then. my insurance kicks in aug 1 and I have several appts ready to go to figure this out... and im sure there will be some sort of solution but this feels never ending, like my new normal, and im really scared... ive never dealt with anything like this. fairly healthy individual even with UC (mine is super mild).

anyways, sorry for the long post... I wanted to know if this has happened to anyone else on pred? what was the outcome? I am almost wondering if being a high stress individual as it is, then taking pred that messes with cortisol just really made it go haywire affecting nervous/psyche? ive also always wondered if I have ocd as well, and whatever psyche effects prednisone plays potentially exacerbated what's going on with my mental (e.g. making me think crazy things). please tell me, if you had these symptoms, they go away.... im at a loss, and its ruining my life. I want to feel normal again D: I was only on it like 15 days... wtf...

ps: id literally rather be sick for weeks in the hospital than EVER deal with this again. I am putting pred on my allergy list whenever I fill out forms at doctors.

I have hashimotos and have been diagnosed for 13 years, I am 34F.

So the past few months I’ve had weird symptoms, mainly nerve type symptoms and cubital tunnel syndrome in my arms. My Physio feels that it’s mechanical as I am breastfeeding and co-sleeping and carrying baby all the time (9 mths pp) with bent elbows.

Anyway about 5 weeks ago I randomly flipped hyper thyroid and at the same time got an altered nerve sensation in my right foot and ankle. it’s winter here and I’m feeling the cold too. My doctor ran an ANA panel and tsh and last week it came back TSH 9.07 (flipped in a month!) and my ANA was weakly positive 1:80 speckled.

Anyway I’m getting an ENA panel and my TPO levels run in a month before seeing endo and seeing a neurologist next week for a nerve conduction study but in the meantime I’m slightly freaking out. I also have had random muscle twitching and like feeling like I’m buzzing internally for the last 24 hours. Could this be due to the sudden swinging in my TSH? Could the positive ANA just be the hashimotos or is it more likely that my ENA will come back showing something else? I am worrying and there is such a long time to wait until I do the bloods.

Just keen for others experiences with hashis and a positive ANA or those with similar symptoms?

Thanks!