Medication suggestions that have worked?

I am new to the discussion forums but I am feeling like I am the only one who has erythromelalgia. I was diagnosed by a rheumatologist in 2012 finally. I remember as a teenager my hands turning purple or bluish, especially in the cold. About 3 years ago I began to have extreme pain, burning and redness in my hands, now its in my feet and my calves. I started swelling about 6 months ago. My attacks have gone from lasting minutes and now lasting for days. I feel like I am crazy. I am an RN and I feel helpless about the treatment. I am taking neurotin 1200mg and naproxen as needed. I was doing ok with and just having minor flare ups. For the last 3 days I have had extreme pain, burning, and redness. I want to know what other medications have people tried?? I am tired of guessing what works and what doesn't and trying this and trying that. Any suggestions?

Hello Brenda.

I am sorry to be the barer of bad news but it seems to be trial and error is the only way to go. What seems to work for one doesn't always work for another and sometimes can even make it worse. I hope you find what works for you sooner than later. I know some people get help from aspirin while others gabapentin or Lyrica. Then some have found help with antihistamines. I myself have tried all of those with no relief but I am going to start Lidocaine infusions and mexeltine pills soon. I have high hopes for this treatment but I know it can be difficult to get approved.

I am sure others will respond soon and they may have other suggestion's. I hope you find the right answer soon.

Take care


Dearest Brenda,

Just to quickly welcome you and say you are not alone.

We have a loving supportive community here - all of us have EM - several also have Raynaulds (they can co exist). EM is frightening at the best of times- especially when acute with progressive spreading. We have all been or are at the 'crazy' stage bless you.

Have attached file on treatment options for you

There are also many management tactics you can use to minimise flare ups.

Having a bad day today myself - but i will get back to you ASAP. My profile has list in meantime.

God bless