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What is wrong with me?!

Fibromyalgia | Last Active: Sep 28 12:20pm | Replies (16)

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@heatonpatti5

Hello, it is me that is being treated for Erythromelalgia right now! There is no test for this condition. It is diagnosed by symptoms, appearance (red skin), and warmth to the touch. However everybody presents differently. Right now I have no burning sensation yet but everything from my knees down are very swollen and red. I've had chronic swelling for years that comes and goes every summer and sever pain on tops of feet for a couple years.
Just thought I'd share my experience in case it rings any bells with you. oh, and it can affect Limbs (typically feet and/or hands but can affect entire limbs) and face as well I read.
Anyway I'm assuming you've been to a foot dr and have had MRI's?
Does your pain move all around your body? I have Fibro as well. Had chronic pain for 24 years. drs always blamed my spine. until JUST 2 weeks ago when I flared and the EM flared as well. I understand you frustration. There IS a blood test for Fibro. It's not covered by insurance though. You can ask your neurologist for it. I don't know if it's new or what but I was NEVER told of this test.
I hope maybe some of this helped! Good luck!

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Replies to "Hello, it is me that is being treated for Erythromelalgia right now! There is no test..."

Thanks for sharing! I knew I had read it somewhere and I thought it was in a different online support group I’m part of.

I’m sorry it’s happening to you but glad you’re on a direction to get some answers.

Wow, my first thought was, “There’s no test for fibromyalgia…” and I googled it and you’re right—it’s new! I wonder if it’s being used and/or covered by insurance 🤔. It seems to have been introduced a few years ago. But I find it odd this didn’t come up at all in a Mayo evaluation I had in 2023 in a clinic that admittedly diagnoses a lot of fibromyalgia as a co-occurring condition. Weird. Thanks for sharing!