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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: 21 hours ago | Replies (290)

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@cinnamon215

Hello, I noticed that you mentioned itching. Some of your symptoms sound like what I went through for the last 4 years. It turns out that my severe and ongoing itching was caused by my liver and I was diagnosed with Primary Biliary Cholangitis with Autoimmune Hepatitis overlap. Have you had your liver enzymes and liver function tested? It wouldn't hurt to rule out that problem with a simple blood test. Also, I wanted to ask you about your ocular migraines!!!!! I couldn't believe my eyes when I read that you were diagnosed with that. I was too!!! But the ophthalmologist that told me just said that's what it was and that was it! Were you prescribed anything for it? Did the doctor tell you that it was autoimmune as well? I have been so worried about this. Thank you for sharing.

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@cinnamon215
Thank you for the suggestion. My regular blood tests all come back surprisingly normal. I agree with the diagnosis of EM for me though. I have textbook symptoms such as the flares (redness, swelling, heat) caused by increased activity, salty or sugary foods, exhaustion, sitting too long, high heat or humidity, etc. I forgot to mention in my original post that I also use a pain cream with imipramine, cyclobenzaprine, and lidocaine applied directly to flares. It helps, but does not much reduce the occurrence of flares.

The Fibromyalgia, Migraines, and my Multiple Chemical Sensitivities actually all fall under the Central Sensitization umbrella. Other disorders such as Restless Leg Syndrome, Chronic Fatigue Syndrome, etc. are in this same category. I was told that once a person develops one such issue, then they are at risk for developing other disorders falling under this umbrella. Try googling it for more details, but researchers point to minute damage to the pain receptors in the spinal nerves, as causation.

Anyway, the pain of Ocular Migraines is certainly taxing and worrying. The first time it happened, I thought one of my retinas was detaching due to the showers of white sparks I kept seeing! Luckily I still have my eyesight... I hope you can find some relief from the Migraines.