Hi all! So I have been dealing with Primary EM and have it on my hands. Certain things like using the computer at work causes the most flare ups. Even when my hands are ‘ok’, they are ALWAYS red. I really don’t get pain, but have to deal with the red hands mainly. I have been trying to research on ways to reduce the redness. Has anyone tried products to whiten their skin? Would it be worth making an appointment with a hand doctor? I know a lot of people on here seek medication for pain, mine is to seek treatment to make my hands not red. Has anyone tried medications to improve circulation? Would love to hear peoples thoughts.
Hello Josh12,
Sorry to hear you are also a sufferer from this strange ailment. I live in Australia and have recently been diagnosed with EM after 10 years of suffering swollen and bright red soles to my feet. I have had considerable success with a product called “Deep Heat” which is mainly Menthol based to stop burning pain, redness and swelling at night (which is when it is worst for me). “Deep Heat” does not make my feet burn at all but for some inexplicable reason has the opposite effect, it seems to cool them after a short time. I have also tried a cream with local anaesthetic - but had to wash it off immediately as it made the burning much worse. I think this is probably trial and error for each individual, but it is worth a try for you - just buy the smallest tube you can (about $6.50 AUD). Good luck!
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I doubt bleaching the skin would make a substantial difference, as Erythromelalgia isn’t associated with skin pigmentation. The erythema (redness) is mediated by hyperemia in the blood vessels beneath the skin.
You should ask a doctor about a vasoconstrictor, something that would reduce blood flow. The one instance in which I saw an immediate, dramatic reduction in Erythromelalgia related redness was when my blood pressure crashed following a phlebotomy. The affected skin went from red to completely white within seconds. When blood pressure was restored the redness and discoloration returned. That would seem to indicate hypotension and its concomitant reduction in blood flow is a mitigating factor for Erythromelalgia induced redness. Thus, I’d ask a doctor about a vasoconstrictor if you are concerned about the appearance of your hands.
Though now that I think it over, perhaps that wouldn’t work. It seems like a catch-22. Vasoconstrictors reduce blood flow, but have the side effect of raising blood pressure. Conversely, vasodilators increase flow, but decrease pressure. Increasing blood flow would seem to be contraindicated in this instance because the erythema is caused by hyperemia in the first place. Yet, the one instance where I saw an immediate elimination of Erythromelalgia induced redness was during hypotension following a crash— reduced blood pressure and reduced flow.
What can reduce pressure and flow absent a blood pressure crash? I’m not sure it’s possible.
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Hello again Josh12,
Please understand that I was only talking about very temporary and topical relief when I suggested Deep Heat. It does not work for me all the time, but sometimes it does. It seems to help with the burning and swelling as well as the redness. I do not think bleaching would be a good idea, as it could damage the skin, which is the last thing you want. My medication at present includes Lyrica and Amytryptaline as well as vitamin and mineral supplements and I am about to start on a fairly radical diet to see if any of that helps.
The other thing I am at present trialling is a circulation booster, also available in this country called “Revitive” and it gives mild electric impulses to the nerves and muscles through the feet and “massages” very like a Tens Electrode Pad. This is at the suggestion of my doctor, a Professor of Neurology who trained in London, and who is very empathetic with my condition and is willing to trial anything which may help the pain, swelling and other physical problems. So many MD’s have no experience of the condition and research seems to be thin on the ground. As my feet are the affected part and walking is difficult on feet that have swollen soles, the stimulation of nerves and muscles seems to be beneficial. The “Revitive” Circulation Booster is only for use on the feet, so would probably not be of help to you, but other readers of these posts might like to talk it over with their MD.
I think from reading many of the posts from other sufferers, that EM seems to come in many different forms with different levels of pain, burning, itching, redness and many other manifestations of discomfort, so what works for some may not for others. Knowing that there are others out there with EM has restored some balance to my life, I felt very alone when no one could tell me what was wrong with my feet (for so many years and after trying every doctor, podiatrist, physiotherapist, alternate medicine practitioner etc etc!) or why I had such trouble walking, sleeping and generally getting on with my life. This forum is really great to connect with people from all over the world with similar problems, as it seems many of us have fought on without help for a long time.
I agree with you, elogagi01. The sharing of experience, treatment, meds, doctors, etc by others who have been there and done that is invaluable. I certainly appreciate everyone who so freely writes and explains in detail what they’ve been through. While I wish none of us had to go through any of this it is nice to know you’re not alone. Great supportive people here!