I am new to all of this. I have only had my diagnoses for a little over a year now. I am currently seeing a dermatologist for EM. Matter of fact I go to see him on the 20th. Very few DR.s in my area know anything about EM or that it even exists. Besides finding a way to cope with EM until they find a cure/treatment my 1st question is. Can or does EM lead to other diseases or health problems.
I don’t think so? However, sometimes extreme cooling / elevation might cause its own host of problems like infections/ulcers that then need to be treated (or may worsen the EM in the long run, eg reactive flaring).
I think it’s more an issue of trying to find anything that could be causing your EM issues. If your EM is secondary to something that can be identified, then by treating the underlying cause, hopefully the EM will improve too.
good luck at your appt on the 20th, i hope your derm is helpful.
edit - Mayo writes that sometimes, the dysfunctional blood flow in EM might lead to small fiber neuropathy (in other cases SFN is a precursor for EM).
Thank you. This all just overwhelming to me. I am just trying to get as much info as possible to present to my derm at the appt. so that maybe he may do some more digging on his own and together maybe we can find something that helps. I can’t stand this not knowing what to do. Let alone the discomfort of EM and the effect it has on my day to day life.
EM can occasionally be a precursor to polycythemia vera (PV) and essential thrombocythemia (ET). Both belong to a related group of slow growing blood cancers known as myeloproliferative neoplasms (MPNs) in which cells in the bone marrow that produce blood cells develop and function abnormally. PV causes an increased production of red blood cells and ET an increased production of platelets. Polycythemia Vera is usually associated with a mutation in the protein Janus kinase 2 (JAK2). If you’ve not been tested for this mutation, you probably should be. Polycythemia vera can occur at any age, but is more common in adults older than 60. Myeloproliferative induced EM is typically responsive to aspirin therapy.
You might ask your derm to consider a try of a small amount of topical Midodrine compounded into a base of vanicream. There is info on our site about this and I have found it my “go to” for lessening pain. I know there is not one thing that helps everyone, but this is something a dermatologist can prescribe. The admins on our site can help you figure out if you have the vasodilating or constricting type of EM, as this makes a difference when trying different remedies.
Best to you at your appointment!!
Thank you I will tell him about this and see what he says. It seems that now my hands are being effected also. definite redness,swelling and heat. this is the pits. How can I talk to the admins and find out what form of EM I have.
I know that Mads, an admin on our site helped me figure it out. First by taking my temperature every day at the same time for 10 days. Give her a shout to see what type you might have. I am also using a product called PEAPURE that comes from Europe. I am in the US, and can order it from a site here in the states. It is a capasule, and I have taken it for 2 1/2 months. After about a month, my hands stopped burning, and are now normal with some redness, but no pain if I use them too much (I sculpt). I ordered it after researching it (in an article on the EM site) then by emailing the researcher that wrote the article. I have found that anyone who writes an article is generally connected with a University somewhere, so the end of their email address instead of .com, or .net, is .edu (meaning education). Because people who write about EM are interested in it, then answer my questions.
Best to you!!
Grrr, sorry for the typos. I meant my hands dont burn unless I use them too much by sculpting, and I meant the researchers do answer my questions.
In many cases the EM is secondary to something else. I started with Ankylosing Spondylitis 30+ years ago, which gave me EM, crohn’s disease, and fibrosis in my lungs (scarring). Hopefully you just have the EM to deal with.
In my case EM was one of several symptoms of chronic Lyme disease. My EM showed up a couple of years before I figured out I had Lyme. I am now seeing a Lyme literate doctor and am getting better, though it is a slow process.
I am new to the support sites and am not the most computer savy person out there. How do I get ahold of mads and what is the address for a good site for EM?
mads is a user here and a former moderator. However, despite the advice you received, she isn’t someone who can diagnose what type of erythromelalgia you may have. You’ll need professional medical help for that. But if you want to give her a shout, her profile is linked to her name above.
If you’re in need of a support group, look no further! That is what we are here for.
I would go to the site and leave your question of how to get hold of MADS under new comments or questions.
I saw my derm and he prescribed Lyrica 50 mg 3x a day. he also stated he believes that I have circulation issues and that I may have Raynauds as well as EM. Yet he did not test me for Raynauds. How do I get tested? My flare’s are the same a nightly ordeal of discomfort and broken sleep. Now I am getting blisters on my toes. 1 toe on each foot has a blister so extremely frustrating. Derm said I need to give the Lyrica at least 6 weeks to get into my system and do it’s thing.