Hello,
I was hospitalized for a massive infection of my salivary glands. After a day, I developed a red face and swollen eyes. My eyes were almost swollen completely shut. After 2 days of IV antiobiotics, I realized the scalp and eyes weren’t responding.I realized it was my Erythromylalgia. The burning started a 100 times worse than I have ever experienced before since my Erythromylalgia diagnosis. Usually hands, feet and ears. My rheumatologist is concerned, because she has never seen or heard of the eye swelling, nor have I. Has anyone else ever experienced this? It was horrifying and I’m looking for some direction. Thanks in advance.
It is with great sadness that i inform you that I am experiencing the same symptoms . I also have the EM in my sinuses. I use lidocaine spray for my sinuses . The only thing that has helped the facial spread is cool spring water, and maintaining a cool environment , AC , which prevents the burning sweats ! Try getting your doctor to prescribe Imipramine 40 mgs. a day , in combination with Tramadol , Amlodipine is also helpful and of course the best analgesic is ASPRIN !!! PRAY…
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That sounds awful. I’m really sorry you’re having to deal with such a dramatic worsening. I’ve never had facial erythromelalgia. However, when my symptoms first exploded I proposed to my doctor lowering my hematocrit with phlebotomies. (I joked at the time it was like I wanted to try leeches.) The idea was simply to reduce the number of red blood cells, as my HCT was slightly elevated. My hematologist decided to give it a try because it was basically akin to donating blood. For reasons unknown, it did help. The phlebotomies stopped and reversed the progression of symptoms. It wasn’t a permanent fix and didn’t remove all symptoms. However, symptoms never returned to being as bad as they were prior and it did buy time to find further treatment that worked in the ensuing months.
I don’t know if that will be of any help to you. It’s just what I did when I had explosive onset.
I have EM on my eyes and on my cheeks. I wake up with very red eyelids and face. In addition I have pain to my whole face. I have tried many and various products none with results. Sorry to hear about your experience. Here in UK I haven’t had much support from the hospital save for advice to carry on with gabapentine. Which is not helping me.
I recently got diagnosed with dermatomyositis. It can cause eye swelling and itching/burning scalp (overlap with SFN pathology). I do not have the typical clinical presentation. It took a doc in complex medical dermatology to try to look for treatable components of my symptoms (testing muscle enzymes, skin biopsy for inflammation, etc), including thorough testing of connective tissue diseases. We are doing aggressive (steroid sparing) immunotherapy.
I wish you the best!
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I have EM in my eyes and on my face. I need to cool the room down and take pain meds.