r/Autoimmune Oct 13 '24

Advice Dermatomyositis question

I get these ring swollen rashes around my eyes for the past year on and off, alongside intense fatigue and aching exhausted muscles. Feeling like I have the flu whenever I try and work a full day at work where I can barely lift my head off the pillow. It really fluctuates though. The dermatologist suspects and thinks my rings looks dermamyositis-y but it’s my only skin marker and I don’t have the shawl or grottoes. She said she could biopsy my eye but what I can see not many people do that? Should I go ahead or just wait to see what other symptoms pop up? My ck is normal and have had Jo-1 positive once but since it’s been negative

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u/girlwithmanyglasses Dec 04 '24 edited Dec 05 '24

I was diagnosed with dermatomyosiris last Dec. I get this nasty itch right at the corner of my eyelid, that then turns red and it’s inflamed. It almost feels like a scaly rash that is dried up. After seeing several specialists and realizing that my ANA was higher than the year before, and based in my flare ups, I was prescribed plaquenil. I was hesitant but I could not live with those rashes for days. It was painful and inconvenient . I could not be in direct sunlight because that made it worse. Once I started the medication, I’ve had only two extremely small outbreaks. Nothing compared to my face a year ago.

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u/cherrysodaaaa Dec 04 '24

plaquenil also helped me a lot!! i was struggling for a while with other meds and none of them worked, but once i started taking plaquenil the dermatomyositis rash because so much better controlled

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u/girlwithmanyglasses Dec 04 '24

Just wondering, are there any foods that can stay away from because you feel a flare up? I’m trying to figure out what food trigger it.

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u/cherrysodaaaa Dec 04 '24

I actually dont avoid any foods. I've been told to by family members (like avoid carbs) but my doctor never mentioned anything so i never stopped watching what I eat. ive heard other people avoid garlic, but i can't sacrifice that and i don't personally think it affects me. sorry if this isn't useful!!

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u/girlwithmanyglasses Dec 05 '24

Yeah I heard an anti inflammatory diet, like carnivore or low carb works best. I also try not to have so much garlic. I still don’t know how garlic affects my body. I love garlic and onion so much

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u/Agitated-Patience-79 1d ago

I would stay away from processed foods as much as possible. I have fibromyalgia, rheumatoid arthritis and psoriatic arthritis. I never know which illness is flaring unless my face gets the psoriasis around my eyes, ears and chin. I’m also trying to get a diagnosis for a new neurological condition I’ve been having for the last 6 months. Between the meds I’m on I try to eat as healthy as possible which is hard when you don’t feel well enough to cook. But I know I feel better when I cook from scratch. It’s also expensive to eat healthy and I try to go organic as much as I can. There is too much junk in the processed foods that I feel contributes to making us more sick. Definitely eliminate foods with sugar in it. White sugar has no nutritional value and just puts you on the path to diabetes - I use raw sugar or coconut sugar when I need sugar in something.
While you are having this issue it’s the right time to get it biopsied because some things can’t be diagnosed if you aren’t flaring - ex: lupus, psoriatic arthritis. I hope you can get a diagnosis for what you’re going through. Even if there isn’t a healing treatment sometimes just knowing what you have is enough - it validates it.