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Are there any patients with erythromelalgia? Have you been successfully treated at Mayo?
Recently I tried using frozen packs to cool my burning feet.. It helps and is easier than soaking in cold water or sitting in the shower spraying them in the middle of the night.. Hope this helps you…
@hotfooted, Do you mean you are applying frozen gel/ice packs directly to skin? Please be aware that using ice or anything frozen on hot, flaring skin, can cause nerve damage over time. This is due to blood vessels dilating during a flare, which leaves nerves vulnerable to intense cold. Try using an unfrozen gel pack. If you must use ice/ice pack, wrap it in a cloth, and apply for only a short time. It’s less convenient, but worth it in the long run.
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I tried the frozen gel packs & what relief but then the podiatrist said eventually it could damage my skin. I'm now using water bottles filled with water & keep in the refrigerator to stay cold, they really help when I have flare ups which is almost daily, its the ones like people use on the heads for a headache. Sometimes I put ice cubes in the bags to help them to stay colder longer.
Thank you all for warning me about keeping the cold packs on my feet too long.. I am aware of the danger, but only use them for a very very short time.. say 5 minutes or so.. It does help me get back to sleep sooner.. I promise that I'll be careful! Also, I have given up sugar in everything that it's possible and that has made a huge difference in the flareups.. I slept through the entire night last night and it's been years since that's happened..
Hi hotfoot, I too have erythromelelagia it has changed my life actually turned it upside down no standing for over 20 minutes, no hot showers, no swimming I. warm pools, I spend most of my days with my feet propped up fans going day and night and sometimes run cold water in the tub and soak my feet until the burning stops. I take gabapentin, cymbalta and propananol 3x daily, if I miss one does of propranolol I'm up in the middle of the night soaking my feet. Horrible disease.
Hi aluck.. Recently I was finally diagnosed with Diabetes type 2.. I hope you will refer to my most recent posts because I had a wonderful experience while visiting the Nutritionist for the first time.. My feet were purple and flaring dreadfully.. When she saw them like that, she immediately said there is something that many folks swear by an easily available herbal treatment.. It's available from Walmart, Amazon, even on Ebay.. "Frankincense and Myrrh NEUROPATHY"… It comes in a liquid "drops" form and you add a few drops to some hand or face cream, then spread it wherever your pain is.. She used 6 drops mixed with a tablespoon of hand lotion for me… The effect was instant! The flare began to fade and the pain began subsiding.. I ordered some from Amazon Prime and it arrives tomorrow.. I will be posting about how it affects me from now on… Hoping for more of the miraculous relief that I experienced that day! Be aware tho, some folks have responded that it did not work for the particular type of neuropathy/pain… Blessings..
Thank u, I recently started using CBD oil, 3 drops under my tongue 3x's daily it has not relieved all pain but has reduced flare ups, but I will definitely try this oil. Thanks
Hello @hotfooted — Thanks for the private message. Your question "why is there no specific Group Category for Erythromelalgia? I know Mayo Clinic has doctors and treatments for this condition, so I am puzzled" is similar to questions others might have been thinking so I wanted to address it here.
There is discussion on Connect for Erythromelalgia that I think you are familiar with which is the discussion that I am posting your question in here:
> Groups > Autoimmune Diseases > Erythromelalgia
I'm tagging Colleen @colleenyoung our director in case she wants to add any thoughts or corrections. New groups are added to Connect based on activity and need. Since I joined in 2016 Connect has made a lot of significant improvements and added groups and discussions as the need arises.
As you mentioned in your question, Mayo Clinic has doctors and treatments for the condition. Our moderator @kanaazpereira shared a good description that talks about what Mayo Clinic offers earlier in this discussion. Here is a link to Kanaaz's post: https://connect.mayoclinic.org/discussion/erythromelalgia/?pg=1#comment-122070
I would also like to mention a feature on Connect that most members probably are not familiar with – the search function. There is a good discussion on how to use search to find conditions, discussions and more here:
> Groups > Just Want to Talk > Search – It can help you!
Thank John, for your reply.. I will watch for further developments, as I know this is not a very common malady.. Those of us who deal with it on a daily basis have many questions and are searching for ways to relieve our pain..
@hotfooted Thank you for the tip regarding frankincense and myrrh for neuropathy. I was wondering if you have an update regarding how this oil is working for your Erythromelalgia? Currently, I use a prescription pain cream which contains imipramine, lidocaine, flexiril. It does help somewhat with pain, but it will not stop a full flare. So, I am always searching for something that might be more effective. I also started taking CBD gummies (no THC) in March. They help with pain from this condition and also my Fibromyalgia. But, I don’t think the CBD I take reduces flares. I’ve had Erythromelalgia for a little over a year, and it is slowly getting worse. It worries me, but I have appreciated the recommendations and support from this message board.
I'm glad you asked.. as I have been posting almost daily about my "experiment" with the Frankincense and Myrrh NEUROPATHY rubbing oil.. Now I can't find where I've posted, but I'm an older lady and haven't really learned my way around here yet.. You might try asking John, a Moderator where to find it.. I would like to post again today if I can locate the place.. Erythromelalgia conversations are listed under Groups, Neuropathy and there are 34 presently..
Nevertheless, I can tell you today that my pain has drastically improved since I began using this oil.. but now my feet have changed to much milder flares of red hot burning, AND most of the time they are so cold that I've started wearing my husband's baggy (on me) wool socks.. If a flare begins, I remove the sock on whichever foot it's on, rub on some oil and wait for it to simmer down.. this can take a while.. I can tell you that I can walk from one room to another mostly without pain.. but still sit and keep my feet raised most of the time.. My doctor told me that it's essential for me to get some exercise, so I ride an exercycle for a mile every day.. Ours has a fan that is run by the wheel turning and that is really good for me.. I will increase the exercise distance gradually.. and I wear only my Merrell Treviso slides when I pedal.. These shoes don't have seams or hard places that could rub my sensitive feet and I buy them on Ebay from time to time.. I will never wear a pair out, I know! Recently I bought a pair there for only $11 plus $11 shipping, just for a different color.. these are grey.. they were listed as used, but actually show no signs of wear.. Like many of us, these were bought some time ago but sat in the closet mostly.. The Merrell shoes from a few years back are great for foot problems, but when they began having them made in China the quality went down drastically.. I won't purchase the newer ones.. the soles are thinner, etc… whereas the older shoes have a wonderful footbed that is smooth, supportive, and softer.. You can tell that I'm sold on them, I guess.. The only meds that I take are Cymbalta, Lisinopril, Mefformin, and Piglosgtena??…. My doctor recently gave me the name of another topical cream that I might try if I need to.. It's available online from a site in Colorado at present, as it has a derivative from marijuana in it, altho doesn't include the part that makes a person "high".. Also another that is habit forming, and carefully watched by the powers that be.. I can get those names and add them if you request them from me.. I've had Erythromelalgia for years, but it has only impacted my life so much over the past 2 or 3.. Thankfully, I am retired and can keep off my feet most of the time.. Please let me know how you get along, keep in touch… Blessings..
emfm4me I enjoyed hearing that frankensense and myrr helped you I also do essential oils I mix arnica cream add 10drops Peppermint,10drops each of lavender, frankensense@eucolyptus really helps with pain I use it on back,knee and legs hope this helps too
Hello lioness.. I'm glad that you found a combination of oils to help you, too! Until I discovered F&M rubbing oil from the Diabetes nutritionist, I had never considered using anything like this.. For the past year about, I couldn't even use any lotions on my feet without setting them off burning, etc.. This combination of oils w/lotion (actually my face cream) helps reduce the flares and pain.. I am grateful!
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