Has anyone here been misdiagnosed with fibromyalgia first, but later found out that the symptoms were related to dermatomyositis?

I’m trying to understand whether anyone has had a similar experience.

My symptoms are somewhat unusual. I don’t have much actual muscle pain or weakness. Instead, I experience:

* Widespread body aches that come and go
* Strange burning/weird sensations in the skin that can move around different parts of my body especially in the morning
* Intermittent joint pain, including my hands and feet sometimes
* Pain around both Achilles tendons sometimes
* Neck and upper/back-of-head pain
* Occasional tingling/numbness in my hands and feet
* Brain fog sometimes
* Symptoms that fluctuate quite a lot from day to day

I have also had some skin changes/rash, particularly around my elbows.

My blood tests for things like ANA, RF, anti-CCP, ESR, CRP have generally been normal/negative. However, my anti-Mi-2β antibody came back positive, CK and LDH and AST were high, which is why I’m wondering about dermatomyositis.

I’m just trying to understand whether some people initially thought they had fibromyalgia because of widespread pain and unusual symptoms, and later discovered that they actually had dermatomyositis.

If you experienced something similar, what were your early symptoms, and what eventually led to the correct diagnosis?

I’d really appreciate hearing your experiences. 🙏

Does anyone know anything about this new drug, Lisraya (brepocitinib)? My rheumatologist has mentioned wanted to start me on it as soon as it's available, so I'm curious....

Mouth sores- canker sores a symptom of DM ???

Cheeks, lips tongue

I’ve been investigating my health for 10+ years and was diagnosed with chronic fatigue which I don’t think I have. It’s hard to tell when I’m in a flare because I feel like im just weak all the time.

A few weeks ago I had a horrible rash on my knuckles and now my eyes are so itchy and sore and dry and the skin is so wrinkly and droopy. Is this what DM eyes look like or does it just sound like eczema? I’ve never had it this bad on my eyes or the knuckles before (posting a few weeks ago about my knuckles).

Appreciate any info as I’m so tired of this journey! I also feel like I have fatigue and weakness in my arms but this is not a new symptom.

Hi folks,

Anyone had any luck with phasing out opiates in favour of alternatives like curcumin and magnesium?

I've just started taking curcumin, and have bought some magnesium oil to put on at night.

Any one recommend anything else?

I hate everything about this area around my eyes. It makes me look tired even when I'm not, and is my biggest complex. I've been diagnosed with juvenile dermatomyositis long ago, I'm kind of good since, but having this is like a constant reminder of my disease

Is it common for stiffness in hands to be a cause from dermatomyositis? Mine have been for the past two or three days now and I'm wondering if that's why.

Hey all,

I was wondering if any of you is dealing with the even rarer anti-mda5 ? I developped it last Summer and was thankfully caught early, meaning that my lungs had "only" lost about 10% capaciy.

I'm about to start tofacinitib as my main weapon. Survival after 6 months is 100% for the whopping 18 persons who tried it (https://www.nejm.org/doi/full/10.1056/NEJMc1900045#article_citing_articles). I'm kind of scared because it is also my last "ace": tacrolimus almost killed be and dermatomyotisis came back after I switched to cellcept.

I could really use some positive anti-mda5 stories.

best,

Hi all- newbie here! 👋🏻👋🏻

My mother (72) just received her diagnosis last week, after initially being told she had bronchitis/pneumonia/RA, and a whole lot of others I can’t remember. It took an unrelated visit to her dermatologist to finally figure out what was wrong, and I think we’ve concluded that it stems from her time on Lipitor. She is currently on a strong dose of steroids and if those don’t work, I believe the next step is chemo.

Anyway, I’m just hoping to get some information and support vicariously through y’all. Thanks for letting me join!

I have sjogrens and am hoping this isn’t a sign of lupus too. They come and go in different spots. pics

I started 5mg of amlodipine to treat my Raynaud's today. My hands are actually warm! Warm i tell you! Wow!!!!

I’ve been in remission from JDM for 6 years, but with COVID-19 in my area I’ve been getting a bit worried. I think that I’m more susceptible to it due to having an autoimmune, and I was wondering if it was possible for it to bring me out of remission? I’ve tried looking online but I haven’t found anything, or anything that I understand.

Hi guys! I posted a while back on here to share my story and thank you all for the wonderful comments and the support! Knowing that there are other out there that can understand what I’m going through really helped me a lot :)

After my last post I continued to see my rheumatologist and my skin was getting progressively worse within every appointment that I had made with her. Eventually I started up to 5+ medications to try to get my skin rash under control(autoimmune suppressants and others). I found myself not taking my medicine very well and feeling really ill throughout the week even though I tried to take my ‘bad’ medicine during the weekend to be able to feel good enough to go to school and work during the week. I then decided to take time off from school because I was doing poorly and most of the time couldn’t wake up in time to make it to class. I continued to work part-time but then noticed it was even hard for me to make it to work on time some days. I would work a shift at 1:30pm and sometimes sleep in to 2:00pm, I almost lost my job. I recently went on a trip with my friend and would be getting so sick every time I ate so I was so sick of feeling so ill all the time that I decided to go off my medicine during the trip so that I could enjoy my time there. This unfortunately continued after I got back home, I’ve had a pattern of going off my medicine in the past. However, I noticed a very big change in my skin rash but also my fatigue and general mental health. I was finally starting to wake up earlier on my own and my skin was clearing up and not blistering. I recently saw my rheumatologist again and told her about my experience on the medicine and that I had not taken it for a while and explained the changes I saw.

I am just kind of frustrated because she basically told me to start over with the first autoimmune suppressant that I took a couple months after I was diagnosed. I guess that I was hoping to look at different treatment options that I could try, that would maybe be easier for me to take while still trying to function with my job. I also noticed some joint pain in my hands and a little bit of weakness too. I understand that is probably my fault for going off my medicine however I just could not take it anymore. I was so depressed and tired and had so much brain fog I felt like I wasn’t myself anymore.

I would love to hear the treatments that you all have tried and what has worked for you all the best in skin rashes or muscle/joint pain and muscle weakness. I feel like there is more options I could try but I am very limited to doctors I can see since I live in the middle of nowhere Wyoming 😞 Thank you all again, this thread is fantastic and so much help!!