The Erythromelalgia Association

Neurologist

So since my last post I was referred to NHNN and they ordered mri of brain and spine and some electrocution type tests. Today the neurologists says the results are all normal and there is no small fibre neuropathy and therefore there is nothing else they can do!!! That resulted in tears from me because I am 4 years in pain with no diagnosis. Eventually he agreed to refer me internally to a professor who might have a better understanding of what is wrong. He also said he would write to my gp about trying some different medications such as pregabalin or amitriptyline. Has anyone had any experience of these and do they make and difference to the burning pain which is getting worse as the years go on?? Thanks

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What sort of burning pain are you experiencing? Burning like a sunburn or more of a burning/tingling? If it is the latter, gabapentin and pregabilin both worked for me. I am currently on gabapentin. Amitriptylene did not help me but we are all different. As far as the burning that comes with erythromelalgia, nothing has helped other than just trying to avoid the triggers and then applying cold packs when needed.

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It's just the burning pain that comes with Erythromelalgia. I've been on Gabapentin since last September and it's no better. In fact, it feels worse. My EM is progressing - I used to just get red burning palms but now it is spreading to the back of my hands. I'm fed up of being dismissed by every doctor I see. I am in pain and I am really fed up of it now.

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I also suffer with this condition, misdiagnosed for years as plantar fasciitis, I insisted on a referral to a podiatrist, who knew something about my symptoms & suggested a referral to the pain clinic, this is where I was advised to try Amytriptylene, gabapentin, pregabalin etc, however it was was my rheumatologist who suggested I try Duloxetine, which has worked pretty well (all other drugs left me sedated) for the last few years. Might be worth a try. Good luck.

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