I am currently waiting (very long wait) for an appointment with rheumatology for a diagnosis of erythromelalgia. Four years of pain and two operations for carpal tunnel has not relieved pain. My hands, feet and ears seem to have the same symptoms. Any advice on medications that have worked to relieve pain, or treatments would be amazing.
Many thanks
Louise
👍My Erythromelalgia (EM) has been a 24/7/12 nightmare for many years (simultaneous with Raynauds (RP) in my case). So am always on the lookout for info on this. Sadly, there seems to be no straightforward treatment pathway…seemingly because each case of EM (especially secondary EM) tends to be very idiosyncratic. So finding the best pain relief & pharma treatments for you is very much a trial & error thing…& can involve several offering clinicians, eg I get advice from my rheumatologist +dermatologist + specialist podiatrist.
My EM is secondary to infant onset systemic lupus + the usual secondaries: Sjogrens, small vessel vasculitis, sural axonal peripheral neuropathy, raynauds etc. Am 68. It’s crucial your clinicians do their best to figure out the whether there can be several causes underlying your EM. for instance, although my EM is secondary to lupus, over the years I’ve noticed it permanently increased in severity after surgeries with general anaesthetic + after trialling the vasodilator nifedipine.
Anyway, by now am v experienced at using the lifestyle management tricks that have proven to help me even a little bit. The greatest self help technique I’ve come up with recently are these…I’ve got 3 diff versions & they are saving my sanity - my clinicians have given these the ok cause they don’t go in the freezer + am using them carefully so as to avoid aggravating my Raynaud’s - juggling the RP/EM balance is so hard 🤦🏼♀️
amazon.co.uk/gp/product/B08...
So, having been following the science on EM for 10+ years now, FINALLY there is better info being published officially! So, here are a few links to-up-to date sources of official info on EM treatments + pain relief that are helping me figure do my best how to cope now…but maybe you know these sources already…Anyway, here these are…I hope something in them can help
💞💞💞💞 Coco
erythromelalgia.org/wp-cont...
erythromelalgia.org/wp-cont...
dovepress.com/current-pain-...
Hi Louise, sorry to hear that you have this miserable complaint. Barnclown has already given you so much useful information. I find that managing the triggers that cause flares (if and when possible) is generally more helpful than medication. Yes, it's a long wait at the moment to get seen on the NHS. If you feel that it is too much to wait you may consider a private consultation. The Erythromelagia Warriors face book group can provide you with a list of knowlegable doctors - not all medics are familiar with EM and its treatment. They also have a huge amount of info and personal experience that you can tap into. Very kind and helpful folk. Good luck!
Early signs of skin involvement?
Kenalog and Hydroxychloroquine. 
