Quote:
Originally Posted by Zayne
I was never officially diagnosed with this but I am sure this is what was happening to my feet and hands long before my idiopathic peripheral neuropathy was diagnosed. Hands would get so hot and unbearable. My neuropathy has my upper front thighs burning like this at times especially at night. Not as painful as hands that are almost as dead as my feet now.
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I have been trying to figure out how to make a new thread here but for some reason I am particularly dense tonight. So........i am putting my tip/thought/question/remark here in the hopes that those of you with EM (erythromelalgia) will see it.
I suffer pain and intense burning and swelling in my feet with my EM. All it take is standing too long (15 minutes is too long it seems) or walking 20 minutes. There are many other triggers as most of you who have this already know. (I also have PN and Raynaud's)
My latest prescription from my doctor was for amtriptiline/ketamine cream which I can massage in up to 4 times a day. Jury is still out as whether this helps or not, I'm still experimenting with it but what I just tried the other day was Benedryl gel which I rubbed on my flaming hot burning feet and the relief was almost immediate.
The simplest of things seem to help me. I do take antihistamines which have been a blessing from God and since Benedryl IS an antihistamine I guess the direct approach to the affected area seems to work.
I have tried aspirin and that did not help at all. I have tried clonidine which also did not make any difference. I am also taking neurotin and have tapered down the dosage from 1800mg to 1200mg/daily. I don't seem to notice that this has made my symptoms any worse (thankfully) so my goal is to go off completely and maintain. I hate the side effects but do have to admit I would rather suffer those than give up daily living because of the pain.
I take claritin (am) and hydroxizine hcl 25mg (pm) and now the benedryl. I think this combination has given me the most help. I now go through days without flare-ups instead of just hoping for a few hours of relief.
I have tried so many things that people have so graciously told us about through this wonderful forum and have been grateful for all the input. So I am now inputting back and praying that this might work for someone else.
Thank you all who have helped me through so many very dark, painful and depressed days. I do not know what I would do without you.