I was just curious as I like to learn as much as I can about my conditions and do a lot of research using Google Scholar (https://scholar.google.com/) and a few other reliable sites for my idiopathic small fiber PN. The Erythromelalgia Association has some good information on their site if you haven't seen it before - https://erythromelalgia.org/resources/faqs/
I understand completely. I’m not saying there aren’t any info or sources that validate my list of choices. There very well may be. I’m only saying I haven’t looked for them to be able to provide. Thank you for sharing the website.
Most of the major websites I’ve looked at for answers about EM were not very helpful for me personally. I’ve tried a number of their recommendations that made little to no difference. The list of things I wrote are the only things that have made a noticeable difference for me personally.
I have gone from almost being wheelchair bound to now being able to garden outside in the summer heat. I understand EM is very personal and what works for one, will not work for another. Folks can take what they want and leave the rest.
Hello- I’m new hear. I had EM for 2 years and it has now been dormant for 8 years. Hopefully forever! I received the J&J vaccine after much debate as I don’t want anything to bring the EM back. Anyway, it’s time for a booster and by the looks of it J&J is not a very effective vaccine. I’d like to get Pfizer but am nervous as I’ve recently read about some cases of acute EM (it went away) after getting moderna and Pfizer. Again, I want to be protected but don’t want to risk the EM returning. Coming here for real world experiences with the vaccines and EM. Thanks!
I am as curious if anyone has been diagnosed with Erythromelalgia. What treatments may have worked for them, I am currently on gabapentin and Effexor and it helps, but still having flares, happy I found this group!
Hello- I’m new hear. I had EM for 2 years and it has now been dormant for 8 years. Hopefully forever! I received the J&J vaccine after much debate as I don’t want anything to bring the EM back. Anyway, it’s time for a booster and by the looks of it J&J is not a very effective vaccine. I’d like to get Pfizer but am nervous as I’ve recently read about some cases of acute EM (it went away) after getting moderna and Pfizer. Again, I want to be protected but don’t want to risk the EM returning. Coming here for real world experiences with the vaccines and EM. Thanks!
Hello @jeichmann21, Welcome to Connect. It is really good news to hear that your EM went into remission and it has been over 8 years. Until we hear from other members with Erythromelalgia who can share their experience with you, I found some information that may be helpful.
"Reports indicate that nearly 10% of patients may achieve spontaneous remission of their symptoms, never to be affected again. The principles of treatment in erythromelalgia are aimed at correcting the underlying cause." -- Erythromelalgia - American Osteopathic College of Dermatology: https://www.aocd.org/page/Erythromelalgia
I am as curious if anyone has been diagnosed with Erythromelalgia. What treatments may have worked for them, I am currently on gabapentin and Effexor and it helps, but still having flares, happy I found this group!
Hi @recthrpy, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about erythromelalgia. I did this so you can more easily connect with fellow members like @crazyface5000@jeichmann21@dipperlip1@capsaicin and others. I encourage you to read through the past posts.
How long have you had erythromelalgia? How long have you been on gabapentin and Effexor? What do you do to soothe the pain during a flare?
I have a history of mild PN but also recently diagnosed with EM in my feet (burning and redness). I am taking 2400 mg of Gabapentin and 30 mg of duloxotine (Cymbalta) every night and it has helped a lot with burning feet at night. I can sleep without having to get up and put on "cold socks" every couple of hours.
I have a history of mild PN but also recently diagnosed with EM in my feet (burning and redness). I am taking 2400 mg of Gabapentin and 30 mg of duloxotine (Cymbalta) every night and it has helped a lot with burning feet at night. I can sleep without having to get up and put on "cold socks" every couple of hours.
I have secondary EM and idiopathic peripheral neuropathy. I have found several things that improved my EM and nerve pain. Many people do not believe or understand what it is like living with EM, and therefore think the suffering is only in the mind. I am not here to argue the reason why these things seem to have helped or make recommendations, only to share information that you can take or leave.
In no particular order:
1) Removed all root canals and metal fillings. Marked reduction in numbness after healing from dental surgery.
2) Warm (not hot) baths and keeping my foot temp as stable as possible with warm socks. Yes, it hurts at first, but soaking full body from the neck down helps reduce flares tremendously.
3) Avoiding vasodilators like epsom salt, certain meds, magnesium supplements, and for the most part chocolate. Important for managing recurrent flares.
4) Threw away my foam mattress and any cushions made of foam. Wool is expensive, but works wonders for temperature regulation.
5) Turned off the wifi to any and all electrical devices. Yes, it was annoying to switch everything to LAN cable, but it helped a great deal after an adjustment period.
6) Rarely wear shoes with foam inserts. Again the foam is terrible for temp regulation. Makes my feet start to burn within a short time of putting them on.
7) Spend time outside away from electrical devices whenever possible. This last one has taken me the longest to heal to a point to be able to do it. I was not able to do this while having huge EM flares.
I also have Erythromelagia., so far , I have nothing that controls it. I agree with some of your recommendations such as warm not hot showers or baths, but don’t understand some of the other points you have made. How does being around electrical devices or internet cause a flare?
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I understand completely. I’m not saying there aren’t any info or sources that validate my list of choices. There very well may be. I’m only saying I haven’t looked for them to be able to provide. Thank you for sharing the website.
Most of the major websites I’ve looked at for answers about EM were not very helpful for me personally. I’ve tried a number of their recommendations that made little to no difference. The list of things I wrote are the only things that have made a noticeable difference for me personally.
I have gone from almost being wheelchair bound to now being able to garden outside in the summer heat. I understand EM is very personal and what works for one, will not work for another. Folks can take what they want and leave the rest.
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Like -
Helpful -
Hug
2 ReactionsHello- I’m new hear. I had EM for 2 years and it has now been dormant for 8 years. Hopefully forever! I received the J&J vaccine after much debate as I don’t want anything to bring the EM back. Anyway, it’s time for a booster and by the looks of it J&J is not a very effective vaccine. I’d like to get Pfizer but am nervous as I’ve recently read about some cases of acute EM (it went away) after getting moderna and Pfizer. Again, I want to be protected but don’t want to risk the EM returning. Coming here for real world experiences with the vaccines and EM. Thanks!
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Like -
Helpful -
Hug
1 ReactionI am as curious if anyone has been diagnosed with Erythromelalgia. What treatments may have worked for them, I am currently on gabapentin and Effexor and it helps, but still having flares, happy I found this group!
Hello @jeichmann21, Welcome to Connect. It is really good news to hear that your EM went into remission and it has been over 8 years. Until we hear from other members with Erythromelalgia who can share their experience with you, I found some information that may be helpful.
"Reports indicate that nearly 10% of patients may achieve spontaneous remission of their symptoms, never to be affected again. The principles of treatment in erythromelalgia are aimed at correcting the underlying cause." -- Erythromelalgia - American Osteopathic College of Dermatology: https://www.aocd.org/page/Erythromelalgia
Current pain management strategies for patients with erythromelalgia: a critical review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6121769/
Are you able to share any information on your treatments before EM went into remission?
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1 ReactionHi @recthrpy, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about erythromelalgia. I did this so you can more easily connect with fellow members like @crazyface5000 @jeichmann21 @dipperlip1 @capsaicin and others. I encourage you to read through the past posts.
How long have you had erythromelalgia? How long have you been on gabapentin and Effexor? What do you do to soothe the pain during a flare?
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Like -
Helpful -
Hug
2 ReactionsI have a history of mild PN but also recently diagnosed with EM in my feet (burning and redness). I am taking 2400 mg of Gabapentin and 30 mg of duloxotine (Cymbalta) every night and it has helped a lot with burning feet at night. I can sleep without having to get up and put on "cold socks" every couple of hours.
Pkagarwal, did you see @crazyface5000 post here: https://connect.mayoclinic.org/comment/634046/
Your tip of cold socks could be added to the list. Are these special socks or do you have socks that you keep refrigerated?
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1 ReactionI buy these socks from Natracure (also avaialble on Amazon). They have two gel packs in it to keep your feet cool. I keep them in the freezer.
I also have Erythromelagia., so far , I have nothing that controls it. I agree with some of your recommendations such as warm not hot showers or baths, but don’t understand some of the other points you have made. How does being around electrical devices or internet cause a flare?
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Like -
Helpful -
Hug
1 ReactionI just got those socks too! Helps to quickly cool my feet.