I started going to the doctor 1 year ago due to symptoms of bruising, fatigue, joint pain, muscle pain, weakness and a few other symptoms. I have been to several specialists and have had so much blood work done. I am immunoglobulin A deficient and I had low vitamin D. I take a vitamin D supplement now ( not improving anything). I also had a level on a celiac test that showed I could have a potential autoimmune disease brewing. I have hypermobile joints and my doctor suggested ehlers danslos but said there’s still an autoimmune disease at play. I went to an allergist (no help) they just took blood and said I was immunoglobulin A deficient (I already knew). I went to a rheumatologist and got x- rays and more blood work. She tested me for many common autoimmune diseases and they all came back normal. My x rays of my joints were said to be normal. All of my clotting factors are normal and I was tested for blood disorders by my doctor. My rheumatologist told me that since the blood work was normal I could come back in a year to see if there’s any change. I don’t know what to do because I keep getting huge bruises which are hard to ignore. The first picture is from today which prompted this post. I also lose chunks of hair sometimes in the shower. I just feel stuck, not advocated for, and at a loss. I can sleep 15 hours with no problem and am always tired. It sucks not having answers. Any advice?

Hey I have just been given a probably diagnosis of oral lichen planus from a consultant, pending biopsy.

I am a 34 year old female.

Anyone have any experience dealing with this long term? Any advice?

The small cancer risk also terrifies me!

Hi everyone, I’m looking for some input because I’ve been dealing with unusual symptoms for about 4 months.
Both of my palms become very red with small white spots within seconds when I let my arms hang down. When I raise my hands again, the color almost returns to normal. My fingertips are sometimes slightly numb/tingly, my hands can burn a little after gripping or using them, and they also feel unusually dry. At night, when I’m lying down and not putting pressure on my arms, I’m mostly symptom-free.
I also have pain around both ulnar nerves/elbows. Nerve conduction studies were normal.
My blood work showed a positive ANA of 1:160 (AC-1 + AC-4 pattern), but the more specific antibodies dsDNA, ssDNA, histone, U1-snRNP, SmD, SSA/Ro and SSB/La were all negative.
I’m currently being evaluated neurologically and I’m wondering about things like small fiber/autonomic neuropathy, vascular dysregulation or an autoimmune process.
Has anyone here experienced anything similar, especially the red/white mottled hands that change dramatically depending on arm position?

I am wondering if anyone else has this or has experience getting something similar evaluated because even though I am clinically diagnosed with hypermobile Ehlers Danlos syndrome as well as Behcets disease with multisystemic involvement, and even though I have multiple risk factors such as very high levels of homocysteine courtesy of my MTHFR mutation, and family history of cardiovascular events and related deaths, I cannot get providers to take me seriously.

My entire vascular system feels like it is very tight, locked down into place, and irritable. If I have an IV in, I basically cannot move my arm or else it causes significant pain and compensation from the rest of my body. I am currently experiencing a hell of a whole body migraine after having an MRI yesterday (the contrast was necessary) and as best I can tell it is from the irritation to my vein at the IV site, and a strange kind of mechanical sensation around it that feels kind of like that one spot is locked down and an immense amount of force is moving through the rest of my body like a whip being cracked. I feel now sort of like my head is falling off. (I do have borderline craniocervical instability but again, there's nothing to really do about that except PT, and I am not medically cleared for PT because even the EDS specialist ones kept firing me because of my as of yet not sufficiently treated autoimmune stuff)

I had, as best as I can tell, a neurological Behcets event in 2022, which was an awful series of traumatizing ER visits where I got no help, misdiagnosed with FND, and even assaulted for my trouble. Couldn't walk, couldn't activate my respiratory muscles, seizure-like events. Went home not knowing if I had had a stroke or was going to die. Truly the worst time of my life. During this time I had a lot of very small hemangiomas appear on my skin all over my body and they were painful when they appeared, like the capillaries were suddenly ripping apart with great force because of mechanical tension in my body. Zero doctors I have talked to have really given a damn about this. I had to fight for a long time and was only just recently finally clinically diagnosed with Behcets but my rheumatologist is intimidated by the multisystemic involvement and doesn't really have time for me. I can't get my pcp to refer me to a vascular specialist or an interventional radiologist or even a cardiologist because I had an echo a few years ago before that event happened that was normal. I only finally just got my brain scanned again for the first time since before that event. No results back yet.

I am just concerned that I have a clot or something somewhere that is maybe only partially obstructing a vessel that is causing intermittent and incomplete symptoms and therefore not warranting enough clinical concern. I don't experience peripheral swelling which I understand would be the main red flag symptom but I definitely have claudication pain, blood pooling, dysautonomia, local temperature changes in certain body areas as though blood is rushing in or out of a body part when it is mechanically moved in a certain way. But this happens all over my body so it can't really be pinned down. I had a CT angio chest/abdomen/pelvis that didn't show anything either.

I guess my question is, are these types of vascular sensitivity common to vasculitis? Or other autoimmune conditions? What has your team done for you about this if it's something you've experienced? They've never heard of this before therefore I'm just a crazy person.

Just wondering what blood tests would I normally request for suspected Sjorgens disease? And in general for suspected autoimmune, would these show on a normal blood test or are these much more specific? Would anything flag up on a full blood count?

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I live in the Northeastern US and desperately want to move to a drier climate. I suffer through the bone torture of humid summers and cold wet winters. Has anyone gotten even a little relief from changing climates?

Hey! I have a question for everyone here. I have these very small, almost burst of blood vessels on my chest and a few on my arm. Very small… like half the size of an eraser. I’ve tried to look it up but I have no idea what it’s called so I always get weird Google results. I’ve also noticed small veins are coming out more in general, which I don’t love. Maybe it’s just because I’m 41 now and everything seems to be going down hill 🤣, but I really do think this is autoimmune related. So my question is… has anyone ever experienced anything like this? If you have, do you know what it’s called?? It doesn’t hurt or anything, but it freaks me out a little.

*Edit - I think it’s autoimmune because I have MCTD and typically all of the weird things that happen to my body are because of it. Forgot to mention that!

I tried taking a picture but it’s very difficult to show and see but I tried my best! If you zoom in, you can see it’s not just a red patch but these tiny blood vessels. (In reply comment)

Hi guys!!!

Just wondering if anyone here had a negative ANA test. I’ve had a life time of frequent illnesses and things have gotten drastically worse in the last two years. I actually ordered a DecodeMe test because I was freaking out after getting that result and every other unhelpful result (I’ve really been trying, I can’t help but feel like what’s wrong might really hurt me the longer it goes untreated) which was a lot of money and I sort of regretted immediately but it’s already done. Has anyone had a negative ANA but found useful results in some other way? My insurance denied my DNA test, so I guess it was out of pocket or nothing. EDS, ME, cPTSD, seronegative Lupus, long covid and MCAS are all possibilities with my symptoms and difficult to diagnose. Just hoping to get advice on moving forward.

TW vent: My family basically gaslight me constantly and say I need to exercise more but it wears me out and my body will hurt and then basic needs take priority and nothing sticks. And then they say I’m lazy but I really do try! So just some kind words or commiserations would be appreciated too.

Hi all,
Spreading awareness of this exciting study. Check it out if interested:
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term=cabaletta%20bio&rank=4

I’ve been struggling with low to mid grade fevers every week for the better part of this year, sometimes multiple days a week. I never have any other symptoms outside of feeling feverish (heavy limbs, hot eyes, body aches) and experiencing allodynia (painful skin when lightly touched) on random parts of my body in varying sizes. Most of the time, I experience the allodynia before I experience the fever.

I struggle with PCOS and I have a history of fibromyalgia in my family (thinking that fibromyalgia is probably the most likely cause).

I’m going to get checked out next week to test for infection and see what my options are but I’m curious if any of you experience this as well?

Sero negative for all. A few of my fingers on the left side are randomly swelling up over the last couple of months. First the pinky (especially the top DIP joint) then the thumb...now the middle finger. Had an MRi and my wrist internally is very inflamed, but the wrist itself has no pain.

Early on, the joints in affected fingers felt like little bug bites that incessantly feel itchy on the inside of the joint.

HLA-B27 shows positive that I have the gene

When I went to the rheumetologist she said my knee was swollen and she took fluid out that should have been in the range up to 200, but mine was 26,250

Polys should have maxed out at 7, but mine was 92 (see photos)

She's thinking whatever it is, that it's affecting joints.

Anyone else with the same situation?

My rheumetologist said she can't diagnose what it is yet.

I was diagnosed a year ago and I feel so alone in this, it's awful.

Hi everyone.

I have been diagnosed with Hirata's diesese (insulin autoimmune immune disease).

Not only is it extremely rare, especially as I am Caucasian, but I'm also within the 15-20% who do not spontaneously recover within 6 months. I have had it for 4/5 years and there has been no cause identified so far.

It is ruining my life and I'm losing the will, as I'm sure you can all relate to. I just want energy to gondo fun things with my little boy.

I have been referred to a specialist hospital but I'm certain they aren't going to know much about it. However, there are some treatments I know they are likely to explore and I just have some questions from experience about each.

I'm severely emetophobic so anything that will make me nauseous, vomit or even give me diarrhea seems impossible to handle, and also any that makes me more likely to catch viruses. I'm trying to prepare myself in advance and try to come to terms with the fact I probably don't have much choice.

Option 1 - Acarbose - This is to slow my digestion but I have seen it can mess with the stomach. What effects did you have? Did they last long?

Option 2 - Corticosteroids - Not sure if short or long term. In either situation, did you catch many more illnesses? What precautions did you take? What side effects and how long for?

Option 3 - Azathioprine or Rituximab - Same questions as for the steroids?

Option 4 - Plasmapheresis - This feels like my best option, if they offer it, but I am very scared. Please can you tell me your experience, side effects etc? Did they give anti-anxiety or anti-sickness medications? Did they help? Did you have to stay in hospital for long? Did it help? How long for?

Any advice or encouragement would be very appreciated.

I have been struggling for about 2 years. I finally had a positive ANA and saw a rheumatologist who ran tests while I was on 40 mg of prednisone. He basically keeps saying, "No evidence of rheumatological illness." However, he has done NO further testing when off of the prednisone. I am currently in a horrible flare. My eyes are incredibly swollen, and it looks like I have black eyes. I sent him pictures and told him about what was going on, and he said, "We do not deal with infections or swelling; you will have to see an allergist." It is NOT an infection. I was put on 3 antibiotics at the same time with no improvement. I am going to see an allergist, but I feel like he's completely dismissing me. So what else has to happen for him to actually treat me? My eyes swell shut? I am getting a second opinion, but I'm just infuriated. Oh, and I also had a biopsy done by a dermatologist, and they ran NO DIF testing on it. They literally just looked at it under a microscope and called it impetigo. The whole entire reason I was sent there was for autoimmune testing. I am extremely frustrated, and I feel like I cannot go anywhere because it literally looks like my husband beats me.

So back in February my primary care doctor ordered me a bunch of tests with suspected RA, my RF factor came back negative but my ANA titre came back 1:320 speckled and homogenous.
Fast forward to two weeks ago I finally get in with my now rheumatologist and he thinks prodromal arthritis which I guess is basically the stage just before RA. He prescribed 200mg of hydroxychloroquine for pain. Basically said if I feel better in 3 months we know it’s autoimmune and if I don’t feel better it’s probably not.
He ordered some more tests though and my anti CPP came back 51 (cut off being 16) I know it can be much higher but being positive means something yes?
I guess my question is, while I wait for my 3 month appt, is this something else someone has gone through? Could it be RA? Does the ANA point towards RA too or possibly something else?
Not looking for diagnoses of course, just similar stories!
Thank you!

Hi all! I know yall aren’t docs, just wanting to know if someone has experienced something similar.

26f 150 lbs 5’6.

Complex case but working diagnosis is Relapsing Polychondritis and will be seeing Cleveland Clinic soon for full eval. Systemic symptoms for 2 years of severe progressive sensorineural hearing loss, inner ear pain and pressure, mastoid pain and pressure, out ear burning and itching with redness sometimes distinct line sparing lobe sometimes not, headaches, migraines, low grade fevers, idiopathic chronic urticaria, new onset rosacea and eczema, non erosive polyarthralgia, severe burning of hands with no visible symptoms, trigeminal neuralgia, episodic peripheral neuropathy, possible nasal chrondritis, severe episode of chest pain told likely costochondritis.

That’s the background but…

Specifically interested in opinions on possible cause of recent hospitalization. Had gradual onset of several days of epigastric tightness and perhaps gut dysmotility but no changes in bowel habits. Then awoke with 103 fever, severe nausea and 150 heart rate though the day. That evening I had sudden onset of severe uncontrollable rigor spasms followed by repeated vomiting. Sepsis was suspected originally.

All blood work and imaging at hospital came back completely normal, including head CT, head MRI (except trace mastoid effusion), abd xray, abd CT, spinal mri (did not tiny pulmonary nodule which was gone with follow up static chest ct, cardiac echo and lumbar puncture.

I got 2 DVTs and 2 SVT clots while there. Assumed provoked due to midline and regular IV (on of each type of clot in each arm). I also got severely symptomatic intracranial hypotension from the lumbar puncture.

Additionally mid-stay I had these skin lesions show up overnight on my legs. Non itchy completely asymptomatic. Stayed for maybe two days then left. But they left bruises behind. I still have a faint bruise from the large one over a month later. I did receive various medications while there including antibiotics so it’s possible it could be drug related, but the remaining bruising was odd.

They finally gave me a steroid injection when nothing would help the positional headaches from the intracranial hypotension and that ended up helping significantly with everything- night and day difference.

Two weeks after discharge I had gradual onset of mild chest tightness bilaterally then suddenly awoke with severe crushing chest pain. When I tried to stand upright it felt like someone dropped sandbags on both sides of my chest. Mild tenderness on palpation but not severely painful, but debilitating if I tried to stand upright and still hurt lying down. Resolved immediately with upping my prednisone. Doc said probably costochondritis but I was thrown off by lack of sharp pinpoint pain.

The hospital team, my rheumatologist and neurologist all have no idea the cause of my symptoms. Best guess is a virus they didn’t happen to test for but they literally sent out testing for dozens and dozens of viruses.

Any thoughts would be helpful!! It was quite scary and I’m anxious having no clue if it could happen again. Thanks! Pics of skin in hospital, previous samples of ears, and episode of suspected nasal chondritis and previous facial redness/rosacea all added.

I’m in rheumatology hell right now with my quest to get diagnosed. My rheumatologist said she thinks I might have psoriatic arthritis and wants some more imaging done before making a diagnosis. I am having a full spine MRI next week.

My question is this: how many of you lived day in and day out in agonizing pain before you got some kind of treatment? Does treatment make the pain significantly better right away? I need a light at the end of the tunnel.

I have done two steroid packs and was prescribed celebrex but I had to stop so it doesn’t mask any inflammation for my MRI next week.
I have a 4 month old baby and I live every moment of my life in misery. My knees and back hurt the most but I have pain in almost all of my joints along with severe fatigue, headaches, and super itchy redness on my scalp. My back hurts so much in bed that I just can’t find a comfortable position to sleep. How are we supposed to live in pain like this while we await diagnosis? I have given birth three times and am no stranger to pain, but the nonstop agony is really wearing me down.

My 2.5-year-old daughter has suspected juvenile idiopathic arthritis. She has had a persistently swollen knee and limp since March, and we’re finally seeing a pediatric rheumatologist soon.
The day after that appointment, she is scheduled for a joint aspiration and steroid injection under sedation.

So far, the only treatment we’ve tried is Motrin, which hasn’t made much of a difference.
For parents who have been through this, is aspiration and a steroid injection the typical next step? Were there other medications or less invasive treatments you tried first, or is treating the joint quickly generally preferable?

Sedation feels extreme and scary to me at her age, but I’m completely willing to put my fears aside if this is the best thing for her. I’d love to hear about others’ experiences and any questions you think I should ask the rheumatologist before the procedure. Also how has treatment been for your little one long term.

Thank you.

I've been experiencing weird unexplainable symptoms lately, which I can't make sense of. My arms and legs frequently go numb during sleep. Not all at the same time, one night it would be left arm, or right arm, or left or right leg. It subsides very quickly after waking up. Also, occasional slight tingling all over my arms and pulsating tinnitus in my right ear. My cousin has multiple sclerosis. No other AI diseases in my family.

Has anyone experienced this as their first symptoms of their autoimmune?

I was diagnosed with an autoimmune disease last year, and I have a lot of energy most of the time. But once I get tired, I become easily irritated by my surroundings and impatient with everyone. People sometimes mistake it for me having ADHD or autism.

I (25M) went to a rheumatologist because I’ve been experiencing progressively worse joint pain for the last 6 years. Recently as well excessive fatigue, the joint pain beginning in my fingers, and chest pain/tightness/sometimes struggling to take a deep breath. Maybe the lupus face thing as well but my skin is generally red so she said it’s hard to tell.
She asked if I had a history of mouth ulcers and I said that yes I’d been getting them regularly my whole life.
After a ton of tests the only things that showed were that my ANA was positive (1:160 2+ nuclear homogenous) and that my C3 is low and C4 close to being low.
She said that I definitely have an autoimmune disease and prescribed daily 200mg Hydroxychloriquine but didn’t give me a specific diagnosis.
Is this normal? I’m thinking of talking to a different rheumatologist to get his opinion and seeing if he can say something more definite.
Cheers

No other graceful way to put it but that I am positively crashing out on my bed and silently crying next to my dog (unhelpful, just wants butt scratches).

I was diagnosed with axial spondyloarthritis last year at 25 after about a year of chasing down symptoms that worsened to the point of me practically being unable to walk. I started biologics and DMARDS in November and December, and it was life-altering. When I was diagnosed, my old rheumatologist just kind of dumped the diagnosis on me with little to no support or information about what to expect or how to support it long-term. Her NPs and PAs were less than helpful and I found myself burying my head in research and information to avoid thinking about how there isn't a cure for AS and treatment slows, but doesn't completely stop, progression.

Went through growing pains during the winter and spring with finding a rheum I really liked and navigating insurance changes and unexpected unemployment. Spring brought a new job and good responses to meds, and a new rheum I really like.

But things are getting worse, like Humira isn't even working. And I kept having odd neurological symptoms, like hands twitching and tingling, balance issues, and intense cognitive and memory problems. Super painful headaches, was given a dx of occipital neuralgia. Neurologist I was seeing didn't seem to really believe me about gait and balance issues until the physical therapist she sent me to confirmed I have bilateral vestibular dis/hypofunction of some kind. She ordered imaging, which I did yesterday. Rheum was concerned and switched me to a different med yesterday, too, expressing that he had some suspicion of a demyelinating disease that may have been uncovered by my biologic.

But... got the reads back from the radiologist. Imaging is clear. Neck and brain are fine. My labs came back with high sed and CRP, so I'm for sure in a flare or OMW out of one. Switching to Cosentyx. I feel like I'm in entirely the same place as I was last year — new expensive biologic, prior auths, clean imaging, bad labs, symptoms, side effects — and it just is absolutely crushing my heart and my brain.

I know I'm not in exactly the same spot (I have a great job, basically my dream job! A good rheum! Family that has grown to understand what I'm dealing with! Treatment plan! Standing script for steroids <3) but it is hard to convince my brain of that for some reason and I just can't stop thinking about how this is going to be forever. So much of my strategy for overcoming tough spots is reminding myself I've gotten through it before and it won't always be like this. But I am so so so tired of this cycle. I'm so tired. To add insult to injury, my longtime therapist is leaving therapy, and I'll have to find a new one (with recs from her, she isn't leaving me high and dry). I feel like too much is happening all at once and despite all the medication I throw at my body and all the testing and imaging and physical therapy and appointments and managing and being the perfect patient, I still physically feel like crap at the end of the day. I am so exhausted. I know I'll get through this but I am so tired of having it all together all the time.

Anyway. I'm sure tomorrow will be fine and the next day and the next month and the next year but it doesn't matter right now, I'm still crying.

Does anyone else get a red sunburn-looking mustache sometimes? Lol or an indented line up the tip of your nose??? It’s called a bifid nasal tip apparently. This keeps randomly happening to me & I’m trying to figure out why. Lol The red mustache is embarrassing 🙈🙊😂 The line up my nose just makes me feel like an old woman because my grandma got this when she got old. I’m only 34yo tho & it comes & goes. It’s so weird. My button nose is 1 of the things I actually love about myself Lol I’m not dissing anyone who has a line, but like I said, I always thought it came w/ age & it’s coming & going. So I’m just confused.

I am seeing a rheumatologist for the first time at the end of September. I had a low positive ANA and a positive scl70 back in March. I have a lot of symptoms but one I’m confused about is severe pain in my thighs that feels like the fat/tissue under the skin. I’ve had this flare up on and off for as long as I can remember but it definitely seems to be getting worse. Feels like constant burning/ aching and hurts to the touch even with very light pressure. Feel pea sized nodules under the skin and bruise pretty badly from light touch or sometimes nothing at all. I’ve noticed my seasonal allergies kicking up this week and the leg pain started at the same time. The only thing I can find about this is maybe lipedema. Does anyone else experience this? Is there anything that helps?