new to the group and looking for info. Have had severe burning and pain in my feet since Mar 2011 and nobody can tell me what it is. It is worse when I put my shoes on alone and especially when I walk. I found out about this issue when I was reading about Polythemia Vera which i do have.I presently take Cymbalta 60 for the burning and Methadone 15mg for the regular pain. Both can be level 10, especially the burning. I went to my primary doctor who had to idea what erythromelagia was so looking for some info as what type of specialist can help me. I read that Nifedipine which i take since 2005 for high blood pressure can cause this and have since changed high blood pressure meds. It has only be 3 days since i learned of this ailment and the problems i have meet erythromelalgia to a T. Some symptoms mentioned I do not have i.e. the swollen, red feet. I tend to have flare up with the burning pain as of late and am trying to see if anyone can tell me what I might can apply to my feet to relieve the burning and is safe. Looking for any info or help on what I believe has been causing my extreme burning and pain in my feet. Thank you for any help one can probide
Hi Tom,
Sorry to hear you aren’t have much luck of a diagnosis or any doctors help. With Erythromelalgia though not everyone gets swelling but you do get the red feet, do you not get that? As that’s a defient for EM. There are other conditions that’s symptoms are burning pain I don’t know what they are personally though sorry.
Gabapentin if EM, is one most people get started on first on 100mg then increase the dose if necessary. I see a neurologist who diagnosed my EM. Creams if EM for me and others can really react badly to the skin and make it worse rather than better. A thing might be to try lidocaine patches? E made me worse personally but could be something worth trying.
Good luck!!
Since it can be secondary to Polycythemia Vera the doctor who diagnosed your PV may be able to help. I assume it was a hematologist. Have you tried the aspirin therapy yet, since it is often helpful when EM is secondary to PV? Dosage recommendations can probably be found on the web if you're good at search terms. I think it's a pretty small dose so it's within reason to try it unless you aren't supposed to have aspirin due to allergy or GI problems or something.
Another option is to travel to see Dr. L. Afrin at MUSC since he is a hematologist and is also an expert on MCAS, which seems to be a cause or trigger of my EM, and it's so difficult to find docs knowledgeable on that. I know he's seen patients who were diagnosed (or maybe misdiagnosed) with Polycythemia Vera. There was mention of it in his 2011 lecture that is available on the Canadian mastocytosis Society website.
There is someone in my yahoo EM group who has PV and may have suggestions. I don't know if she's also in this group. You may want to read old posts to get some ideas for treatment. Good luck to you in finding answers.
Erythema (red skin) is part of the name, and so is necessary for a diagnosis of erythromelalgia, at least to my limited understanding. Here is a link to an article which discusses erythromelalgia plus other conditions that can cause some similar symptoms. For instance, they mention Fabry disease, which causes the burning but not the redness. There are other possibilities too. http://www.ccjm.org/content/79/5/356.full
Good luck with your diagnosis!
JoAnn
Lauren mentioned Gabapenin...I'll tell you what, I had the horrible burning in my feet for a long time. I Couldn't wear socks or shoes, and even walking around outside in sandals was unbearable, especially when the sun shone on my feet. Then I started Gabapentin. I am currently on the max dose (3600mg a day), but ever since I started it, I can sleep with my feet under the covers, wear shoes, and live my life again (at least the foot part, don't get me started on my hands). It's not perfect, but give Gabapentin a try. That's just my experience...worth a shot if you can tolerate it.
Yeah that’s a good example of how trial and error Em meds can be what works for some doesn’t or increases pain for others. Gabapentin, the highest dose or the other doses does nothing for me, doesn’t even touch the edge! And the highest dose made me gain about 5 stone and that isn’t any exaggeration!. Gabapentin is one of the main ones doctors will start you on though and some find relief mixing it with other meds too I’ve seen. So it’s really a tricky road of finding the right balance or pairing in meds I guess.
and I have been on Neurontin but now on Cymbalta for the burning pain....what threw me off is the video on the left where the young lady had red red feet.....but the link that clarrajo provided me is more like what my palms and bottom of my feet look like....so not sure just how red they have to be as there is a major difference between the video and the web link.....I see an Oncologist for the PV because it can ultimately result in lukemia, so hopefully when I see him in 2 months he is familiar with this disorder as PV is rare in itself....but you folks sure have been helpful with your responses in just being on the group for the 2nd day.....
Chalx said:
Lauren mentioned Gabapenin...I'll tell you what, I had the horrible burning in my feet for a long time. I Couldn't wear socks or shoes, and even walking around outside in sandals was unbearable, especially when the sun shone on my feet. Then I started Gabapentin. I am currently on the max dose (3600mg a day), but ever since I started it, I can sleep with my feet under the covers, wear shoes, and live my life again (at least the foot part, don't get me started on my hands). It's not perfect, but give Gabapentin a try. That's just my experience...worth a shot if you can tolerate it.
and i got seriously confused, but when i looked at the photo albums Lauren has severely red feet but my feet and hands look redder than LeeLee28, Liz, Shenaigans....so going by Laurens pic I assumed no way, but if the others have it then my hands and feet look worse that that so I am still left hanging not knowing how red your hands and feet have to be....
Lauren said:
Yeah that's a good example of how trial and error Em meds can be what works for some doesn't or increases pain for others. Gabapentin, the highest dose or the other doses does nothing for me, doesn't even touch the edge! And the highest dose made me gain about 5 stone and that isn't any exaggeration!. Gabapentin is one of the main ones doctors will start you on though and some find relief mixing it with other meds too I've seen. So it's really a tricky road of finding the right balance or pairing in meds I guess.
You likely do then if your red. Going by mines is a bad example because I seem to have it at an unknown more constant extreme level than a lot lol! So if you are redder than others… You likely do!
Tom said:
and i got seriously confused, but when i looked at the photo albums Lauren has severely red feet but my feet and hands look redder than LeeLee28, Liz, Shenaigans…so going by Laurens pic I assumed no way, but if the others have it then my hands and feet look worse that that so I am still left hanging not knowing how red your hands and feet have to be…
Lauren said:Yeah that’s a good example of how trial and error Em meds can be what works for some doesn’t or increases pain for others. Gabapentin, the highest dose or the other doses does nothing for me, doesn’t even touch the edge! And the highest dose made me gain about 5 stone and that isn’t any exaggeration!. Gabapentin is one of the main ones doctors will start you on though and some find relief mixing it with other meds too I’ve seen. So it’s really a tricky road of finding the right balance or pairing in meds I guess.
Plus, some people can have mild slight redness, doesn’t mean they don’t have EM so don’t worry about that! Def something to look into 