[katieHaylor (OP)]

Dawn says:

I’m an avid listener of your 702 Talk Radio talks!

However, my enquiry is about the latest information on treatment of erythromelalgia  (EM) which I have suffered from for at least 6-7 years in its more severe form.

I have done exhaustive research on my little known condition so do have a pretty good understanding now. The local medical profession are not too clued up and seem to be stuck on prescribing amitriptyline and related drugs. I prefer not to pursue these as the adverse affects and consequent withdrawal are pretty much intolerable for my system.

My enquiry is twofold:
A). do you or your colleagues have any knowledge of new treatments or relevant pain management in progress? I have read of topical compounds eg ketamine/lidocaine/gabapentin being of some help.
B). I shall be visiting the UK later this year. Could you direct me to someone in London SW environs who might help with methods other than the antidepressants/anticonvulsant style pain management? Or compound specialists?
 
ANY information on treatment would be most helpful. I am becoming housebound due to the difficulty in walking nowadays (it is 90% in my feet!) and any exertion results in flaring. I also have lots of food triggers. It is getting me down now.


What do you think?

For information, the 702 talk show Dawn's referring to is also published as a podcast called Ask! The Naked Scientists, and all episodes can be accessed at https://www.thenakedscientists.com/podcasts/ask-naked-scientists

[yor_on]

This is what I found at a fast search.
http://www.drpribut.com/sports/erythromelalgia.htm
( drpribut.com/sports/erythromelalgia.htm)

[exothermic]

I would highly suggest looking into misoprostol, aspirin and gabapentin.

~

[exothermic]

Misoprostol Effective in Management of Erythromelalgia:
http://www.jwatch.org/jd200405250000005/2004/05/25/misoprostol-effective-management-erythromelalgia

[exothermic]

The prostaglandin E1 analog misoprostol reduces symptoms and microvascular arteriovenous shunting in erythromelalgia-a double-blind, crossover, placebo-compared study.: https://www.ncbi.nlm.nih.gov/pubmed/15086539

[exothermic]

ANY information on treatment would be most helpful.

What is the point of posting comments by people who are suffering and in need of help.... if the responses are not relayed to them?

What information was ultimately given to "Dawn"?

Why should anyone on this forum bother providing an answer if the person asking the questions.... doesn't even see the thread.

I came to this forum to help.

Waste of time.

~

[exothermic]

What information was ultimately given to "Dawn"?

Why should anyone on this forum bother providing an answer if the person asking the questions.... doesn't even see the thread.

So is "Dawn" a fictional character.... Or was Dawn already given a legitimate reply prior to posting this thread?

~

[mrsmith2211]

Might as well try turmeric, I have friends with various inflammatory conditions that find it helpful.

[exothermic]

What information was ultimately given to "Dawn"?