Hello, I’m new to this Erythromelalgia group and I hope that someone out there has experienced my condition and hopefully has found something that has resolved it.
Briefly, I can tell you that I’ve been suffering with RSS, also known as genital erythromelalgia, for over 15 months, and I’ve read all the available case reports of this syndrome. The case reports are from Korea, Mexico, Germany, US and Lebanon and I’ve tried all the suggested treatments. My medications has been gabapentin (for the pain) and Amitriptyline, Doxycycline, Carvedilol, along with topical Pimecrolimus and Tacrolimus. I tried each medication(s) over two months then switched to a different one, but to no avail, I’m only on Gaba now for the neurological pain. The case reports aren’t vetted so it’s difficult to know if they are genuine or some doctor’s desperate need to publish. My symptoms are burning sensation, heat, irritation, and hyperalgesia of the scrotum area. To say that I’m going out of my mind is an understatement, the pain is constant and I only get a reprieve when I’m asleep. I have seen two dermatologists and had to educated them on RSS and I’ve have not found one that understands this condition in my geographical area. I’ve read all available information, case reports and literature on RSS and don’t know where else to turn. So I’m now reaching out to support groups to hopefully find another person who has experienced RSS and perhaps we can share our stories and ideas. Maybe someone has found some relief and brought back their QoL. Please reply.
Hello all: I posted this inquiry 13 days ago and it has been viewed by 26 people. I have not received any replies and I’m a bit disappointed. I realize that RSS is not that common of a Erythromelalgia case. Certainly, there are more hands and feet cases. However I thought that there might at least one guy or women (RVS) that might have experienced Erythromelalgia in the perineum, scrotum, inner thigh area. I’ll continue to monitor this site with the hopes that one brave soul will reach out.
Later
That’s a shame that no one was able to help you out yet. That sounds simply miserable what you’re dealing with. Have you tried going the university hospital route or found any experts in the field?
Sharon from Modsupport
Hello Sharon from Modsupport,
Thank you for replying. I’m hopeful that as more people join this group, eventually there will be some other person with RSS. As I mentioned before the case reports extend around the world and although there are few people that come down with RSS, our pain is shared with people with other kinds of Erythromelalgia.
I tried looking for a dermatologist at a University hospital, but it seems that 8 of 10 are in cosmetic dermatology and few are really focused on medicinal dermatology and certainly not RSS. I have another drug to try even though I really don’t think it will work. I’ve read two papers that indicated that some saw improvements with Indomethacin. Its a NSAID and as such has vasoconstriction effects. I will need to be on this drug for at least 2- 3 months if I want to rule this out as a solution. At this point I have nothing to lose and everything to gain if it works.
What’s troublesome is the location of this disease, right between the thighs and any repetitive movement creates friction and heighten hyperalgesia . I used to hike and ride my bicycle all the time, unfortunately, that is out of the question and this bring me great sadness and despair, mostly because I don’t think I will ever find a cure. Although I try not to think like that. I’m lucky I guess, since there are other people with worse aliments, it just kind of sucks at time. Anyway thanks again for asking. Take care,
I used indomethacin for a hot minute for pericarditis. For some people, me included, it can be associated with headache so just keep an eye out on it. I ultimately found a med that worked well for the pericarditis without side effects. Sometimes that’s the big challenge.
That’s interesting about most dermatologists being focused on cosmetics. That probably shouldn’t come as a surprise. That’s where the real money probably is.
Sharon