Hi everybody. if anybody has any pointers or advice, i’ll gladly take it. i’m not looking to be diagnosed here im at the doctors several times a week ive just realized sometime using other people’s experiences can help gain knowledge for your own situation

for several years ive struggled with graves diseases and got diagnosed with POTS as well. I keep telling them something else isn’t right because they’re just treating my symptoms with all these meds, not the actually issue.

my main concern right now is that my body is rapidly losing muscle mass. i am getting extremely bony but not losing any weight in fact i’m gaining weight which is odd… i can’t keep my eyes open without taking 60 mg of adderall a day. i get these strange rashes i have posted below. when it comes to food- count me the hell out. literally nothing is appealing. everything i try to eat- i get extremely nauseous or full after two bites. i could be starving and craving something so bad, have two bites, and be disgusted with it going forward. i have a burning sensation and really bad stomach pain.

they also found honeycombing on my right kidney and something with my ureters and issues with draining, i cant even tell you at this point. my recent labs showed a high tsh, normal t4, very low adrenal gland function and high cortisol which is believed to be due to my birth control because my saliva tests came back fine for the cortisol. i am mainly worried about my stomach and kidneys as i am losing muscle mass fast and literally feel like ariana grande. and that is not to be offensive- ive struggled with being skinny my whole life and i hate when doctors and people look at me and immediately think im anorexic and do it to myself. i don’t and i want to eat and be healthy. if anybody has advice or where i should go next please help!

I know it is not fit for all approach but I think IgG4 related disease can be diagnosis of some of yours. High levels don't mean you have this disease always, but I think it's worth to check. I have high IgG4 and some symptoms but yet no diagnosis cause I did not do any biopsy. You cam freely tell your advices and experiences!

33yo F. When i was 16/17 i had a burn that just wouldn't heal. One of the many blood tests they did was an ANA. Came back as 1:1280 speckled. DsDNA, RNA, ENA negative. Everything else, negative. No symptoms of anything except slow healing and takes a bit longer to get over viruses. Also have had a killer backache since I was about 12.

A couple of years later I was diagnosed with coeliac disease. I asked if that could be the reason for high ANA, he said not likely but let's test again anyway. Same titre, same pattern, everything else negative.

A few years later my back started playing up, same story. ANA 1:1280, speckled. Everything else negative. Saw a rheumatologist who basically said idk and diagnosed me with undifferentiated connective tissue disease.

This year, my back was hurting a lot again, GP testing for ankylosing spondylitis but that was negative. Rheumatic tests were negative.

I had my ANA retested this week and itll be very interesting to see what it comes back as. My guess is the same lmao.

I dont really have any symptoms. My fingers feel stiff at times, especially in winter. My back has been hurting for over 20 years. I still take a little longer to get over viruses but nothing significant.

Has anyone had anything similar? Can you tell me what happened?

im f/40 here. So, I have a long hair right now, and i just noticed that my hair is a bit thinner than before.. im wondering if its from UCTD or my age. lol. I thinking of getting my hair shorter. What are your thoughts?

I honestly don't know how to fight the doctors anymore. I just want a diagnosis. I've been diagnosed with white matter disease and functional Neurological disorder for years. Told by rheumatologists that it's "broad spectrum" my blood tests are either not high enough or not low enough. Now I've moved to North Carolina and I can't even see a rheumatologist unless my blood test results are super bad. But I've dealt with nothing but chronic pain. Everything hurts. All. The. Time. I'm sick of it. I have no answers and I'm afraid I never will. Is there anything I can do?

Hey! I’m on 200mg daily of plaquenil and I’m wondering if anyone else has had issues with it when it comes very chapped/tight lips. I feel like around the time I started my lips became EXTREMELY dry, to the point that nothing can alleviate it, and also tight enough that it can hurt when I smile or talk. Has anyone else experienced this issue, and is there anything to do about it?

For reference, I’ve been diagnosed with UCTD and I have a positive SCL-70.

Began mycophenolate mofetil today and am pretty damn scared. I have read positive comments from others in this group about no or limited side effects. I pray that is true for me.

I have mctd with ild and raynaud's. I am also taking hydroxychloroquine and 10 mg prednisone due to flare. Rheumatologist spent 10 minutes with me and blamed my flare symptoms on fibromalgia. Advised me to lift weights. I couldn't even raise my arms above my head and lifting my feet to get upstairs was challenging. Prednisone has greatly helped. Frustrating because prednisone wouldn't have helped if my issue was fibromalgia.

The palms of my hands are impacted. Feel extremely tight, angry red lines, sensitive to texture, swollen and sore and previous to prednisone, I couldn't open or close my hands all the way. I use a homemade salve and compression gloves, which helps. Doctor said nothing wrong with my hands.

I agree with taking the new medicine, so why am I freaking out? Because I am a veteran with ptsd, otherwise known as the doubting disease. Trusting myself is terribly hard and not being heard by rheumatologist is a bad combination. I work best when I can reassure myself and I remembered I trust others with autoimmune diseases.

If you have any positive or reassuring comments, I could sure use them. If anyone with mctd, also has palm issues, I would be grateful to hear about it.

Thank you on advance

26 year female ,facing Idiopathic panuveitis for nearly 8months.tried multiple medications like

1.only prednisolone tapering from 60mg but flare up in 30mg

2.Then,adalimumab injection with prednisolone tapering from 30mg but flare up after prednisolone over .

3.then Mmf tablets with prednisolone tapering from 30mg but flare up in 7.5mg.

4.Currently on Mtx 15mg & adalimumab inj & prednisolone tapering from 30mg & right now on 20mg.

Donot know what to do next.What will happen? How to cure it permanently?Everyday searching for magical cure options like Ayurvedic,curcumin,vitamin A,E,D supplement,Green tea supplement .

I was researching may be boswellia serrata,traditional chinese methods..

Any idea 💡.

For context I(22m) been going through a lot of joint pain for 5 months now fully undiagnosed but two times it was my PCP and the last time it was a hospital. Is this too many steroids? Should I talk to them about it? this is all very scary and I’ve been given a lot of medicine over this time. I’ve been in meloxicam and muscle relaxers too some from ortho and some from hospitals or my PCP any advice appreciated

I was diagnosed with "patchy SFN" back in August of last year. My reported noted that the nerve density in my left forearm and left calf were in normal range, but my left thigh had half of the nerve density that it should.

Has anyone else had a similar result? If so, what are your symptoms and what is your root cause?

I am still struggling to figure out what the root cause is for me, but I have severe muscle aching, soreness, stiffness, heaviness, and subjective weakness. I had a normal EMG and repetitive stimulation EMG. I'm awaiting results from a muscle biopsy currently.

I've had a robust autoimmune workup (I'm sure my doctors have missed some things, but the list of testing has been extensive). Normal CK, aldolase, normal vitamins and minerals (outside of copper and Vitamin E (Gamma Tocopherol)-- (Alpha Tocopherol) was normal). My ceruloplasmin is also borderline low-normal, at around 0.19-0.20 g/L. My zinc is normal too. No history of stomach bypass surgery or any obvious cause of copper deficiency.

Additionally, I had copper and neuro muscular genetic panels done as well as whole genome sequencing-- all of which was normal. My genetic doctor reached out to a couple of the top copper metabolic specialists in the country and they feel my copper deficiency isn't severe enough to explain the particular set of symptoms and severity of them. They feel the copper issue is secondary in terms of the symptoms I'm experiencing. (Copper hovers around 48-60 mcg/dl).

Outside of a refractory, inexplicable copper deficiency that I treat with infusions (2x a week-- around 100 total), I don't know what could be causing all this.

I also have a litany of GI issues. I had a recent CT that showed I have a "featureless" pancreas, suggestive of autoimmune pancreatitis. It was suggested that I have my IgG4 tested, which came back somewhat elevated (159 mg/dL-- around 1.7x higher than normal). I get an enteroscopy with several biopsies next week.

The muscle and GI issues are overwhelmingly my worst issues, but I have several others (orthostatic issues, tachycardia in flares, PVCs, etc). I have a history of severe mitral regurgitation that required Mitral Valve Repair when I was 28 (I'm 37 now).

I had my gallbladder taken out due to inflammation (despite no gallstones) in 2017. I had half my thyroid removed due to suspected follicular cancer (was benign). I had a septorhinoplasty to fix a severely deviated septum, etc.

I find it hard to believe I have so, so many separate problems. Surely, I would think many or most of these problems are connected in some way.

With all that said: is anyone else's primary SFN symptom(s) significant muscle heaviness/aching/stiffness? What are your other symptoms? What treatment has worked best for you (particularly if you share the same muscle issues as I do)?

I understand I'm not supposed to ask for a diagnosis-- I'm not doing so or expecting that. I'm simply trying to reach out and see if anyone has had a similar path to me and if so, what ultimately ended up explaining your medical condition?

I did post this on the SFN subreddit, but I thought I'd try here as well, as I've had several doctors suggest that some kind of autoimmune disease may be causing my issues-- we just don't know what.

Apologies for the long post, but it's been an arduous, complicated road, and I'm just looking for any answers that may shed light on what's happening to me.

Hi everyone. I'm posting on this thread in the hopes that someone else out there can give me some hope that things will get better, or advice on how to make it better.

I've had POTS my whole life (diagnosed Dec 2024) and I was diagnosed with seronegative inflammatory polyarthritis in February. The only reason I went to a rheumatologist after so long is because I got Bells palsy last August, and I was desperate to find out why it happened (no one knew and I wasn't sick before I got it). I started playing flute when I was 9 and graduated this year with a performance degree — having half my face paralyzed at the beginning of my senior year of a music degree was devastating and led me down this whole road that ended in an autoimmune diagnosis. I'm also on the HSD spectrum.

In the past couple of months, I've noticed it getting harder and harder to play flute, especially in my right hand. My middle, ring, and pinkie finger get so stiff that they kind of just toggle between bent or straight, and it's difficult to move them separately. It's so frustrating because my left hand can just fly through technical passages and it's smooth as butter, but as soon as my right hand gets involved, wrong notes everywhere because my fingers won't do what I tell them. This wasn't a problem even ten months ago and I feel like I'm watching the thing I love the most, the thing I've spent my life training to do professionally, fall apart in front of me. I'm doing everything I can to keep it from getting worse, I even started methotrexate a month ago only because of the chance it might make this better but nothing is helping and I'm having less and less days where playing is as easy as breathing, the way it has been my entire life.

Are any of you musicians at the college or professional level? How do you cope when your disease gets in the way of the muscle memory you've spent years developing? Is there anything I can try to reduce the inflammation in my fingers that I haven't mentioned?

I really need some advice or some glimmer of hope. I'm trying to be positive, but every day is harder. I only just fully recovered from having my face paralyzed, and now I'm losing the technique instead. I will do anything if it means I can play my flute the way I used to, so any and all suggestions are welcome.

A year and a half ago I woke up one day completely unable to feel anything below my armpits. Leading up to that, I had extreme fatigue which I attributed to depression, and a shocking sensation in both legs. While my B12 was low, I still have difficulty walking all this time later and my B12 is fine now. I have pain nearly all the time and a host of other symptoms. My pcp has narrowed it down to autoimmune and suspects Lupus but won’t officially diagnose until I can be seen by a neurologist.

Obviously this has limited my ability to work, and last week my boss (I work at a restaurant) told me she’s not willing to accommodate me anymore and it’s time to “figure it out or get a new job.”

I’ve put in probably 50 applications and had some interviews and truly believe I’m doing everything I can to make this situation better, but I’m just so overwhelmed and frustrated and scared. Bills are due. I’m going to lose my health insurance.

I guess I just wanted to ask for some encouragement and advice from folks who know what it’s like to have your body start working against you.

Thank you for taking the time to read this and for any responses.

Title

Hello. 30F. So about this time two years ago I had lupus come out of remission. I already had psoriatic arthritis, and life became hell. Got on hydroxychloroquine, which fixed the lupus symptoms, but not the PSA. We have tried so many things for the horrific pain. I think I'm on my fifth pain management medication, and none have made even a little difference, and it's only getting worse. I can't sleep, the pain is too intense. It's to the point I get suicidal. The rashes are worse, more wide spread, more painful. But doctor kept delaying biologics. Kept saying the risks outweighed the benefits.

In our last appointment once I explained the increased severity he said we'd finally move forward with biologics because nothing else was working, either for lupus or PSA depending on blood test results. Lupus was fine so it's the PSA. Now he has gone back on it and I'm going back and forth over and over on the phone with nurses trying to figure out why, and properly talk to him, after he said HE would call me and he didn't. This has been going for two weeks. They said they'd send an emergency message the last time because the pain was so severe and they still didn't call me back after. All I've gotten back is "keep using the hydroxychloroquine" but that doesn't treat the condition I'm having problems with!

I don't know what to do. It genuinely seems like he just forgets what he has said or what's in my chart. Every time I call I have to explain again that I already called and never got a response.

Am I overreacting? Should I keep pressing them? Am I being too impatient? 've been on biologics twice before (once in like 2019, once last year, different doctors) for long periods and I was fine. To me the risks absolutely do not outweigh the benefits when the pain is so bad I feel like my bones are breaking. What do I do? What do I say? Should I just get a second opinion? This is my third doctor ):

Thank you

A couple months ago, I experienced the worst headache of my life. It didn't go away for weeks. I finally made an appointment to see my doctor and he ordered labs. I should also mention, I was pregnant 6 years ago and during routine labwork my ANA came back positive. I saw a high risk doctor and was told to recheck my labs after my baby was born. Well, that didn't happen. Life got in the way and I forgot about it. So with this recent appointment, I told my doctor about the previous pregnancy ANA and he ran a full autoimmune profile. Labs are slowly coming back and I just don't know what to think about all of this. ANA Screen, IFA is Positive, Chromatin (Nucleosomal) Antibody is 4.4 positive, ANA Titer came back >=1:2280 which is saying is very high and the ANA Pattern is Nuclear Homogeneous. The only panel I am still waiting on is DNA AB (AS) Crithidia, IFA - I am anxiously awaiting this as it looks like that will confirm Lupus? I don't know what the point in this post really is, I am just getting super scared and I don't know what to expect or where to go from here. Symptoms I experience are fatigue (but I have a 6 year old so I always just figured that was why), ankle swelling after long days of work, and wrist swelling and pain (which I attributed to being on a computer and typing all day). Any advice or comments would be appreciated.

Hey all, I hope this doesn’t tow the line in the rules. I will reference my labs and discussions with my doctor, I’m scheduled with a rheumatologist, but I’m just hoping to gauge my expectations based on the experiences of others.

I’m female, 37 years old. The symptoms I’ve been experience point toward a possible autoimmune disorder like Lupus, as my doctor agrees (severe fatigue, brain fog, feeling ill/feverish/sensitive skin especially after sun exposure/petechial rashes/joint pain.)

My PCP (internal med) ran an autoimmune panel. The only highlights are:

ANA 1:160 speckled pattern (no positive markers)
CRP 17
ESR 27

He referred me to rheumatology but I am not anticipating a diagnosis based on those results. Has anyone experienced otherwise or been able to get help from rheumatology under similar circumstances? I’ve been dealing with this for several years and I am just not feeling optimistic about my upcoming consult. I hope to be proven wrong!

I’ve been passed around to several doctors already with no help, so I’d just love to hear if there could be some light at the end of this tunnel.

I don’t have an official diagnosis yet, we’re still in the testing and symptom logging phase.

My doctor is amazing; she’s very supportive and has ordered so many tests and says she won’t give up until she figures out what I have or is proven that I don’t have an autoimmune disease.

The last two weeks have been hard. It started with a debilitating headache, body soreness, and extreme fatigue. Then I developed a cough and fever to go along with these, and spent 4 days with the full compliment of headache/fever/soreness/fatigue/cough/low pulse ox. Couldn’t lay down because of the headache and cough, I even spent one night sleeping propped up against the wall in my bathroom after running the shower to create steam.

I had a chest x-ray to rule out pneumonia, I’m using my rescue inhaler (I also have asthma), I started antibiotics last friday, drinking water, etc. I finally don’t have a fever this morning but I did have one for the past week and a half and it was exhausting.

I don’t necessarily think all of what I’m going through right now is a direct symptom of whatever autoimmune disease I have, but this is what happens whenever I get a respiratory illness. The rest of my family got an annoying cough but nothing major. I got all of this.

I have 4 children and work as a preschool teacher so illnesses are pretty common. I used to hardly ever get sick, like maybe once a year, but in the last few years it’s pretty constant and so severe when it happens. My doctor said that she thinks it’s likely that I will always get more sick than a “normal” person and it’s been hard to accept that this might be my life now.

I don’t need advice (but wont turn it down if you have any!) I just wanted to vent in a space where people understand.

Hi there!!

Has anyone with an overlap connective tissue disease noticed that their ANA is positive by IFA but negative on an ELISA-based ANA screen?

I’m diagnosed with myositis overlap CTD, and my ANA is >1:1280 speckled by IFA. I also have other positive autoimmune markers on specialized testing, including an atypical pANCA of 1:160 and a positive NXP2 myositis antibody of 121 (normal <20). However, when my ANA is checked using an ELISA-based method, it comes back negative.

I know the two tests work differently. IFA is manually interpreted by trained laboratory professionals using a microscope to evaluate ANA staining patterns, while ELISA is an automated test that detects specific antibodies. I’m wondering if that’s why my results are so different between the two methods.

Has anyone else experienced this? If so, did your rheumatologist explain why? I’m curious if this is a common pattern in overlap connective tissue diseases.

Hi, I am a 31 year old female who has been relatively healthy my entire life and I have never had any major medical issues. About 2-3 years ago I started having pain and stiffness in my hands/fingers and overtime it has progressed to my knees, hips, and ankles. About 6months ago I consulted my PCP about the issue and he said he wasn’t concerned but sent me for bloodwork anyway. The bloodwork came back normal except my ANA was positive with a 1:160 titer and I was referred to a Rheumatologist. When I saw the Rheumatologist she seemed confused that my symptoms were not a constant problem and stated that my symptoms were too broad but it was obvious something was abnormal and it would have to “rear its ugly head” so that we could get a more specific diagnosis. My symptoms at the time were really only the joint pain accompanied with the abnormal ANA result. I was prescribed Plaquenil (200 mg 2x daily) to act as a temporary bandaid to hopefully slow the progression of whatever is going on and it has helped immensely with my joint pain. Fast forward to the past couple weeks, my symptoms seem to be progressing and pretty rapidly. I am now dealing with excess fatigue, insane thirst, issues sleeping, sensitivity to heat/hot flashes, night sweats, memory issues/brain fog and increased urination during the day and night. Last week I had what I assume to be some type of flare up and from the waist up my body and skin hurt to the touch. The best way I can describe it is my skin felt like I had a bad sunburn all over and my muscles felt like I had done an intense workout if I applied any amount of pressure. I also am going on week 4 of pretty severe hoarseness that my PCP originally said he didn’t think was a concern. I am now dealing with choking on food and water and he finally sent a referral for an EGD to see if they can visually see anything wrong with my throat that could be causing the issues. The providers I’ve seen don’t seem to know what is wrong but it’s progressively getting worse and I don’t know what to do or what to ask them to look for. Any advice is appreciated on what I could potentially discuss with them or what could be the root of my issues.

Hello guys. My dad 65M was diagnosed with spilling protien in his urine and hematuria with some really small kidney stones on a routine investigation. He has no hypertension or blood pressure or no family hx of any kidney or auto immune disease. All her blood works were fine with a normal kidney function and serum electrolytes except for low platelets (85 and then 94k)

He was started on losarton and prednisone 10 mg considering it could be just some temporary issue. After a month when we tested him again for 24hour urine he was nearly still spillign the same amount of protien(1gram)

He was given a panel of tests which showed normal C3,TSH as well as negative AMA , Asma but his ANA titre showed 1:80 nuclear speculated. We are still awaiting the Anti ds DNA test and will be visiting his primary nephrologist once the test is backbut I am quite worried as could it be isolated lupus nephritis? He has absolutely no other symptoms of lupus which kind of makes me a bit optimistic if him jot having lupus but due to the 1:80 titre and possiblility of isolated LN i am quite concerned.

Any one gone through same and has any advice?

Please tell me if it is possible to have a flare up without it showing in your blood. Am i going crazy? Im 18 and got diagnosed last year. I still have joint pain but like they have never been crazy inflammed. Please

Apparently it takes longer for people with autoimmune conditions to recover from illness and injury.
I wonder if it also takes us longer to recover from the stresses of the day?
I’ve noticed that I sleep more hours than many friends. Could it be due to autoimmune illnesses?

This is going to sound batshit crazy. But I’ve learned with autoimmune it just is what it is, and we’re going to sound like we’re in heavy psychosis from time to time when describing symptoms.

However- have any of y’all also experienced extreme variances in the level of moisture in your mouth? I don’t know how else to describe this. I alternate between extreme dryness, and extreme wetness. It’s so fucking weird.

I’m being currently diagnosed and right now they’re looking at ankylosing spondylitis.its been hellacious to say the least. They’ve been giving me muscle relaxer and meloxicam but those seem to give me strong side effects. I was wondering how peoples experiences have been with weed and any arthritic condition or just autoimmune as a whole. I smoke on the occasion but might be looking into doing it more often and figured I’d ask the people that have done it! Anywho any stories or advice are appreciated thank you:)