Primary Erythromelalgia

Had an appt with a pain specialist Monday. Had never heard of the disease but had done a little research before I got there. I really liked him, but he, like all of the other doctors I have seen, has no clue how to treart me. He is going to research more, I am going to research more, and we have a meeting on the 10th. Said I may end up having to take opiats on the really bad days. Told me to research if anyone has had luck with any natural supplements or herbal remedies. Today I had an appt. with a Hematologist. My primary sent me to him for one final confirmation that there was no underlying cause for my erythromelalgia.

Tests came back fine so they are telling me it is definitely primary.

I am looking for some advice from any of you that have the primary version of this. I am currently in 100mg of nortiptyline and 20mg of Paxil. We recently bumped up the nortriptyline because it wasnt working as well.

I welcome any and all ideas and advice for what has worked for you. Supplements, herbs, meds.

Thank you so much in advance.

Betsy

I don’t know if I have Primary or Secondary EM. Because I have had Raynauds for 50 years it is presumed that EM is secondary even though EM only developed 4 years ago. Personally I don’t see why it is labelled secondary for no other reason than than the coincidence of having both.
Anyway I take aspirin, cetirizine and clonazepam. Losartan made me feel I was going loopy and I probably didn’t give Lyrica long enough for the side effects to calm down. Pregabalin made no difference.
Good luck with your research Betsy.

Hi Betsy,

Just to check- did you have genetic test for genetic mutation (saliva test)? Are you primary genetic familial or primary sporadic non familial. Confusing right lol!

We had a great post on supplements/herbs - heres link :-)

http://www.livingwitherythromelalgia.org/forum/topics/foods-and-food-additives-that-cause-flares-in-em

Link on polyherbacy

http://www.livingwitherythromelalgia.org/forum/topics/polyherbacy-a-common-challenge-in-pain-patients

So glad to hear you are having some luck with proaware Dr's and treatment options!

God bless

mads

I don't have my answer yet as to mine being primary or secondary. We don't have a cause for my EM but like you mine started later in life and they just don't feel comfortable labeling it yet as the culprit condition can show up strangely enough a few years after EM symptoms present. I do have an Autoimmune condition ( They think...Inconclusive) But that has been treated with decent success but it hasn't made any difference in m y EM so it doesn't leave them confident it is the cause.

I just wanted to say how happy I am that you have found a decent doctor. He actually researched it a bit before seeing you and has assured you he will continue to do so! That is amazing and wonderful. I have such a doctor but it took me years to fin him. You are in good hands :)

I haven't had much success with treatment yet. The most helpful but not helpful enough is Lidocaine infusions with mexiletine pills. These have been the first thing I have found that have made any difference just not enough to be half normal. They have taken an edge off from the pain that is still here after making all lifestyle adjustments.

I hope you find the right thing for you soon.

Take care,

Alina

Good luck with your medication attempts! Most people find some relief with a variety of meds and combinations. I have no advice for you..I have primary EM but it hasn't responded to any meds that I have been able to try and I have severe reactions to a lot of meds.