Saw neurologist about Erythromelalgia - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Saw neurologist about Erythromelalgia


I was able to see my neurologist on Tuesday and he agrees that I have Erythromelalgia. He feels it's just another piece of the puzzle in my non-specific autoimmune disease. He was more concerned that my myositis is reactivated, my nerve pain has worsened and my fatigue increased. So sadly I had to increase my prednisone and he's switching me back from Lyrica to Gabapentin. He says it works better with the Tramadol. The next three weeks should be pretty miserable as my body adjusts, but hopefully after that, things will start to look better. He did give me a referral to see a dermatologist for the Erythromelalgia though. So now I need to follow on that. Anyone else found better relief with Gabapentin & Tramadol as opposed to Lyrica? I took Gabapentin before and it was very helpful, but we kept having to up the dosage. Now though I realize that I probably was just developing new autoimmune issues that were aggravating my neuropathy.

5 Replies

Thanks for the update! Am glad the EM diagnosis has been confirmed by neurology. Hope you'll let us know what the dermatologist thinks about the EM.

Sorry about the myosotis & nerve pain, but these adjustments to your treatment plan sound hopeful. I like the way you're thinking about all this

Take care

🍀🍀🍀🍀 coco

Goldyukr in reply to Barnclown

Thank you for your encouragement. Was in terrible pain the last two days, but today it's lifted and started to feel a bit better. Hopefully each day will improve. Yes, I will let you know what happens with the dermatologist once I get an appointment.

Barnclown in reply to Goldyukr




I take Tramadol and Gabapentin also and too be totally honest it doesn't do much for me. Even with 8,000 mg of Paracetamol as well,I am still in pain . I guess we are all different and it's just a question of getting prescribed the right medication for you, by trial and error.

Good luck 😉 x

Goldyukr in reply to Hidden

I am so sorry that you deal with that much pain. When I have a couple of bad days, it seems it won't end, but then it usually lifts for a little bit. I hope you can find better pain management. You're right. We are all so different. It took a long time for me to find anything to help. Amitriptylene did nothing. Zoloft and Cymbalta made everything a 1000 times worse. Gabapentin was the first relief I got and now the Tramadol has been helping too.

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