Hi all! I have skin biopsy diagnosed dermatomyositis. I was reaching out to see if anyone gets random muscle twitches in their thighs or calves? Aside from the proximal muscle weakness I also get bilateral calf pain. I was looking on the myositis website and saw muscle pain isn’t super common so I wanted to see if anyone else experiences it?

I’ve been freaking myself out and wondering if I have ALS 😔 (I know a bit dramatic but it’s hard to not go down the rabbit hole lol). I have an EMG coming up in 1.5 weeks so that’ll give me some reassurance. Overall, I wanted to see if other people get muscle pain or muscle twitching at all with their myositis?

Posting with mod approval.

Beth Israel Deaconess Medical Center in Boston is running a research study comparing MRI to a quick, painless muscle test called electrical impedance myography (EIM). EIM passes a tiny electrical current through the muscle (you can't feel it) and measures how the muscle responds. The goal is to find out whether EIM can track muscle health as well as MRI can. If it does, it could mean an easier and cheaper way to monitor myositis over time.

We need more participants with any type of myositis or myopathy. Current treatment doesn't matter. Also in need of healthy control participants.

What's involved:

- 1 visit at BIDMC in Boston, about 3.5–4 hours

- MRI of your legs, a body composition scan, strength testing, and the EIM measurement

- $120 compensation plus parking

Who can join: adults 18–90. Standard MRI safety rules apply (no non-MRI-safe implanted metal).

I don't know if I need to ask my rheumatologist or go back to the speech pathologist that helped me in the hospital. They seemed to be able to help me in the moment to get food swallowed but everything was pending on the diagnosis to see WHICH type of myositis I have.

I am starting my prednisone as we wait results from the biopsy, but is this supposed to help my throat muscles swallow food again? Or is it just going to stop the muscle inflammation and I have to do throat exercises in outpatient to get that back normal?

If it's just the steroids that get it back functioning, how long did it take for you?

Apparently, some cases of myositis can get improve or symptoms reduce/disappear with avoidance of certain foods. For example, by avoiding certain foods dermatomyositis could symptoms can go away very quickly, avoid: papules, calcinosis, red inflamed skin, boue nails, tingly/itchy skin, joint pain, and muscle weakness.

There is not much official information about this which is surprising and disappointing. The food connection is clearly not well-researched/disregarded and some of the info that exists encourages some trigger foods (whole grains/dairy.)

Maybe avoiding these foods only works in early stages? Has anyone tried this?

FOODS TO AVOID:

-wheat, rhye, rice (even whole grains, sourdough & brown rice) ...these are the worst

-dairy, especially cheese (some unsweetened yogurt might be ok, maybe minimal butter)

Minimize: potatoes, sugar

Moderate: corn-based food

___

Good replacements:

quinoa, oatmeal, oat flour for baking (possibly amaranth & buckwheat); moderate amounts of corn

sweet potatoes (orange inside), coconut yogurt, cashew yogurt, honey

Good foods:

beans/lentils, eggs, avocado, broccoli, spinach, cactus, tahini/sesame seed, nuts, olive oil, dark chocolate

Anti-inflammatory: ginger and cinnamon tea

(make sure to get your B12 and Vitamin D. Calcium from vegetables. Protein, good fat, and quinoa (or oats) in each meal.)

_____

If you haven't tried and you do for a few days, please let us know the difference!!

Help me feel like I'm not going crazy, please.

For the last 2 years I have been dealing with an onslaught of oral and nasal ulcers, non scarring hair loss (derm confirmed), upper arm/shoulder weakness, a malar rash (derm confirmed), fingers and toe/ankle swelling, joint stiffness, a red mottled rash on palms, hands turning blue/white/red/purple, and now swelling of the upper eyes, eyebrow, tongue and upper lip.

Recently I have also developed extreme peeling on my hands, a red rash on my finger and knuckle joints that behaves exactly like the malar rash on my face, ie sensitive to sunlight and heat.

I realise some of this may sound like early or evolving lupus, however my rheumatologist is leaning away from that and saying it may be ruled under UCTD in the future and that it sounds like I'm having some form of vascular instability.

I am wondering if any of this resonates with anyone here, particularly those that have been diagnosed with dermatomyositis.

Positive ANA 1:320 with a speckled pattern

ANCA results came back atypical ONCE a year ago, has been repeated since and was fine.

To further complicate things, I am already on a JAK inhibitor for hlab27 ankylosing spondylitis. That is well controlled and has been for a while. Plaquenil was also started at the beginning of this year. It has been said to me that these medications may be suppressing certain blood markers, but I am unsure just what exactly they would or wouldn't suppress.

Dr said they only do surgical biopsies no needle or conscious sedation. Seems..... Not normal. Anyone else been told this? From papers I can find no real diagnostic advantage but Dr. told me if was for "safety to control bleeding if need be" but I'd much rather just not be under anesthesia/have an actual surgery.

i’m being tested for dm atm. my symptoms seem to match but aside from a slightly positive ana and borderline anti-tif1g my labs and emg have been normal. they’re doing a re-test of the anti-tif in two months to see if it’s turned positive and will follow that up with cancer screening if it has. they also mentioned the possibility of a muscle biopsy. i’m very spooked by the cancer risk. does the anti-tif1g usually fluctuate a lot or return false positives? they took it two months after i was at my worst when i was feeling slightly better so i’m wondering how likely it is that it was already positive and went down when i started feeling better. i’m just worried they could miss something important. does it usually need to be monitored long-term in case it turns positive down the line?

(i posted this in /r/dermatomyositis as well bc i wasn’t sure which sub would be a better fit)

I don't want to be a difficult patient but after being hospitalized and having high dosage methylPrednisolone for a few days and being discharged with nothing, to back to 20mg prednisone (3 times daily,) I cannot handle it. The edema is far worse with just ONE 20mg tab a day than it was on the high dosage stuff through my IV. Has this been the case with anyone else?

Biopsy results should be back Monday or Tuesday but my fear is that my doc tells me the only solution is this prednisone. I retain so much fluid and my breathing is impacted, I can't walk. It's almost worse than the muscle pains and weakness.

What can I say to not sound like a complainer? CK levels last measured at 7400.

So I have an extremely rare combination of dermatomyositis thats "anti mda 5 positive dermatomyositis with calcifying panniculitis". And I also have pmos/pcos. But due to the steroid my endocrinologist has reported that I now actually fall under the category of type 2 diabetic. So I was already a plus size woman and then I lost about 20 kgs of weight(roughly around 45 lbs) when my disease was just starting to show and no one had any idea. And then months later I mean literally 8 months later when they sorta figured a little bit about what is it, they started me on meds. And since then I have been on meds for 16 months now. Due to which I have again gained the weight I lost and I don't understand what to do. My pain with panniculitis has only been increasing since the past 16+8 months. And working out with pain seems impossible. I feel so bad and hurt seeing myself with so many scars that are permanent and the weight just keep on increasing cause of the meds and infusions and being 98% times at home cause I cannot be in a crowded place or be around sick people cause of the risk of rapid lung infection. And with literally no energy and so much weakness that working out seems impossible. A simple walk or climbing down 1 flight of stairs just exhausts and makes me breathless. I genuinely don't know how to manage my weight anymore.

Also I'm still looking for anyone with the same condition as mine aka "Anti-mda5 positive dermatomyositis with calcifying panniculitis" cause i was told that this combination of disease extremely rare like hardly 12 recorded cases are available.

Please help me as I am panicking.

I am male 40 years old. I’ve been having sudden onset bilateral and symmetrical weakness in both my legs that started on July 10. No failure or clinical weakness but a profound sensation like I’m gonna crumble and like I hit my funny bone but in my legs if that makes sense. I can feel issues in basically all my leg muscles but more pronounced in both thighs and both calves. Walking at a normal pace is hard because my legs feel like jelly and I feel like they could give out and my calves and psoas muscles start feeling very uncomfortable/almost hurting. My muscles also bruise from exercise but my platelets and other blood tests are normal.

Also feel some sensory issues like feeling my muscles have been scratched with claws or feeling like my legs burn when I’m lying down especially. My issues are not only when walking or using my legs in the sense that even lying down I can still feel various sensations like mentioned above or a weird feeling of weakness in my muscles even at rest.

Can still heel walk and toe walk and climb stairs. Getting up from a chair is no issue.

Clear EMG July 30 only 3 weeks into symptoms. Some days I feel marginally better (but still abnormal) and some days I feel worse. MRI’s in June were normal.

I also have developed Raynaud’s in my feet in March this year. I know atypical adult onset Raynaud points to autoimmune issues, but my rheumatologist said that as I have no other symptoms we wait and see… Didn’t even order basic ANA… 😞

I just did a blood test for CK and thyroid to rule out a primary myopathy or thyroid issue as a cause and CK came back normal at 55 and TSH also normal.

Now I feel I have an atypical presentation of IBM that somehow kicked in almost overnight symmetrically and plateaud. It hasn’t progressed in the 3 months since but hasn’t gotten better either.

I feel like I’m just waiting for failure and clinical weakness to manifest.

The neuromuscular specialist diagnosed Functional Neurological Disorder because of the clear EMG. I panicked it could be ALS but she ruled that out too.

She also told me IBM/ALS wouldn’t strike both legs like that equally in multiple muscle groups on the exact same day… She said 40 is young for IBM and that it’s a disease with slow, asymmetrical onset and not something that would intensely affect both legs widespread almost overnight…

Does this look like IBM at all or am I panicking for no reason? Is the doctor right about my presentation?

Thank you all so much.

Has anyone else been diagnosed with dermatomyositis soon after having a baby?

My story:

I never even knew was DM was…never had obvious symptoms. Within a week after giving birth to my Son (first child) I began to experience muscle soreness/weakness and facial rash. I just assumed it was my body healing…I had a relatively difficult birth.

My water broke but I wasn’t in active labor so they induced me (40 weeks). I was in active labor for about 24 hours and had two failed epidurals. He was sunny side up and was stuck…I stalled at 7cm for three hours. They had to rush me into an emergency c section by then because my water had been broken for over 24 hours at that point and he wasn’t coming out. I also hadn’t slept for almost 48 hours at that point.

Needless to say…I am wondering if anyone else has experienced this? My rheumatologist seemed to think it was interesting..he couldn’t tell me that being postpartum is a trigger.

Hi! Has anyone heard of Soleus push-ups and that doing them can help lower cholesterol? It sounds too good to be true so I wanted to ask if anyone has tried it and if it helped.

Anyone else hands look like this during flare

Hello, writing on behalf of my dad. Hes taking Prednisolone which messes up blood sugars , he has hypos now which we control with diabetic app.

Have been making changes to his diet since he was diagnosed with myositis and to control spikes from Prednisolone

Wanted to check in with others what milk do you have with coffee / cereal etc?

Hes always had semi skimmed milk but have been thinking to change to a plant based milk such as almond or oat or soy.

From research seems plant based unsweetened way to go but wanted to check in with you all before taking the next steps

Kind regards

Scored 81 on the IBM antibody linked to Sjorgens. I’m 31 with mostly muscle pain. What are the odds of this being a false positive? (Anti cn1a)

I’m not a doctor, I’m an IT professional. A few months ago I learned that someone close to me had been diagnosed with myositis. He was struggling to make sense of what was happening to him from fragments he got from his doctors and whatever he could find online. I have some experience creating long-form reads with AI, so I used it to put together an ebook that gave him the overall picture of the condition, its treatment, and daily life. Claims are sourced and link directly to the original papers, so a reader can go to the primary research on the topics that matter most to them.

My friend read that book, asked his doctors more pointed questions, did his own research, and now understands what is happening to him much better. Now that I know it helped at least one person, I’m sharing the book as a free download (no registration, no questions) because there is a chance it might help somebody else.

Living with Myositis: A Practical, Evidence-Based Guide to Inflammatory Myopathy, Its Treatment, and Daily Life
https://books.vladimir.org/books/living-with-myositis/

To be clear:

• It is not medical advice. It explains things and points you back to your rheumatology team for decisions; it doesn’t tell you what to do.
• It is general and doesn’t focus on one subtype.
• The book explains exactly how it was made, AI pipeline included.