John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 6355
Joined: Mar 22, 2016
Erythromelalgia is a rare disorder and it's difficult to get a diagnosis.. My feet turn bright red, feel very hot to the touch, and are so very painful when they take off with a flare.. Sometimes though, they are so cold to the touch and I can't get them warm.. It seems that I have a double whammy with Erythromelalgia and Raynaud's, which makes it especially tricky to deal with.. My regimen for the hot burning flareup is to cool by spraying with cool water for a few minutes, then lie down for a while, maybe read or watch tv.. just to get my mind off my pain until it settles down.. Then stay off my feet by sitting with them up.. Also, I use Frankincense and Myrrh rubbing oil on them and that helps ease the pain a lot.. But when they turn all cold, I just need to get them warmed up some but not too warm!! Then I spray with warm water for a few minutes and put on warm wool socks.. Always must keep off my feet as much as possible and keep them up off the floor, either lying down or in a chair with a footstool or recliner.. These are tricks that I've learned over the years and they make my life bearable.. Many folks have EM so much worse than I do…. I'm one of the lucky ones…
I would like to hear from anyone else who is living with Erythromelalgia… Exchange of information and things to try is especially important since this is such a rare health issue..
Hi @hotfooted, I think more members might see your post if it were in the following active discussion on Erythromelalgia. Like you say it is a rare disorder and it is especially helpful when members can share what helps them. Thank you for sharing what helps you.
> Groups > Autoimmune Diseases > Erythromelalgia
— https://connect.mayoclinic.org/discussion/erythromelalgia/
Liked by hotfooted
hotfooted
@hotfooted
@hotfooted
Posts: 115
Joined: Feb 28, 2019
Erythromelalgia is a rare disorder and it's difficult to get a diagnosis.. My feet turn bright red, feel very hot to the touch, and are so very painful when they take off with a flare.. Sometimes though, they are so cold to the touch and I can't get them warm.. It seems that I have a double whammy with Erythromelalgia and Raynaud's, which makes it especially tricky to deal with.. My regimen for the hot burning flareup is to cool by spraying with cool water for a few minutes, then lie down for a while, maybe read or watch tv.. just to get my mind off my pain until it settles down.. Then stay off my feet by sitting with them up.. Also, I use Frankincense and Myrrh rubbing oil on them and that helps ease the pain a lot.. But when they turn all cold, I just need to get them warmed up some but not too warm!! Then I spray with warm water for a few minutes and put on warm wool socks.. Always must keep off my feet as much as possible and keep them up off the floor, either lying down or in a chair with a footstool or recliner.. These are tricks that I've learned over the years and they make my life bearable.. Many folks have EM so much worse than I do…. I'm one of the lucky ones…
I would like to hear from anyone else who is living with Erythromelalgia… Exchange of information and things to try is especially important since this is such a rare health issue..
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 9409
Joined: Jul 23, 2014
Erythromelalgia is a rare disorder and it's difficult to get a diagnosis.. My feet turn bright red, feel very hot to the touch, and are so very painful when they take off with a flare.. Sometimes though, they are so cold to the touch and I can't get them warm.. It seems that I have a double whammy with Erythromelalgia and Raynaud's, which makes it especially tricky to deal with.. My regimen for the hot burning flareup is to cool by spraying with cool water for a few minutes, then lie down for a while, maybe read or watch tv.. just to get my mind off my pain until it settles down.. Then stay off my feet by sitting with them up.. Also, I use Frankincense and Myrrh rubbing oil on them and that helps ease the pain a lot.. But when they turn all cold, I just need to get them warmed up some but not too warm!! Then I spray with warm water for a few minutes and put on warm wool socks.. Always must keep off my feet as much as possible and keep them up off the floor, either lying down or in a chair with a footstool or recliner.. These are tricks that I've learned over the years and they make my life bearable.. Many folks have EM so much worse than I do…. I'm one of the lucky ones…
I would like to hear from anyone else who is living with Erythromelalgia… Exchange of information and things to try is especially important since this is such a rare health issue..
Hi @hotfooted, as @johnbishop suggested above, I moved your message to this existing discussion so that you can meet other members talking about Erythromelalgia.
Liked by John, Volunteer Mentor
Erythromelalgia is a rare disorder and it's difficult to get a diagnosis.. My feet turn bright red, feel very hot to the touch, and are so very painful when they take off with a flare.. Sometimes though, they are so cold to the touch and I can't get them warm.. It seems that I have a double whammy with Erythromelalgia and Raynaud's, which makes it especially tricky to deal with.. My regimen for the hot burning flareup is to cool by spraying with cool water for a few minutes, then lie down for a while, maybe read or watch tv.. just to get my mind off my pain until it settles down.. Then stay off my feet by sitting with them up.. Also, I use Frankincense and Myrrh rubbing oil on them and that helps ease the pain a lot.. But when they turn all cold, I just need to get them warmed up some but not too warm!! Then I spray with warm water for a few minutes and put on warm wool socks.. Always must keep off my feet as much as possible and keep them up off the floor, either lying down or in a chair with a footstool or recliner.. These are tricks that I've learned over the years and they make my life bearable.. Many folks have EM so much worse than I do…. I'm one of the lucky ones…
I would like to hear from anyone else who is living with Erythromelalgia… Exchange of information and things to try is especially important since this is such a rare health issue..
Hello hotfooted, how are you doing with your symptoms? I wanted to let you and the others with Erythromelalgia know that I recently have had success treating my symptoms with Mexiletine. This medication is actually a heart medicine. However, it acts on the sodium channels which are associated with Erythromelalgia also. I am able to live a more normal life with it.
I do have to take it multiple times a day and have blood levels monitored because it has a therapeutic range. I also had an EKG to make sure my heart rhythms were normal before starting the medication. It’s not perfect but it has stopped the flares which cause my feet to turn purple and swell very uncomfortably. Honestly it has been so helpful. Anyway, perhaps it can help someone else with this condition….worth checking out.
Liked by Becky, Volunteer Mentor, lorirenee1
maryv449
@maryv449
@maryv449
Posts: 57
Joined: Dec 29, 2018
I hope that you have found the answer for your condition. It would be so great to finally get some relief for you. Good Luck and Good Wishes.
Liked by Becky, Volunteer Mentor
januaryjane
@januaryjane
@januaryjane
Posts: 175
Joined: Jun 25, 2019
I get hot cheeks, ears, hands and at times feet. I havent been diagnosed. What is the procedure for this? Ive been to drs, basically blaming these "rashes" on a virus. They look no further into it. I feel quite ill getting these flares and cant do much. Im not sure if Erythromelalgia is what i have, but id like to get to the bottom of this. Not lupus. I do have signs of peripheral neuropathy and raynauds, also in the family.
Liked by Becky, Volunteer Mentor
Becky, Volunteer Mentor
@becsbuddy
@becsbuddy
Posts: 1416
Joined: Nov 09, 2018
I get hot cheeks, ears, hands and at times feet. I havent been diagnosed. What is the procedure for this? Ive been to drs, basically blaming these "rashes" on a virus. They look no further into it. I feel quite ill getting these flares and cant do much. Im not sure if Erythromelalgia is what i have, but id like to get to the bottom of this. Not lupus. I do have signs of peripheral neuropathy and raynauds, also in the family.
@januaryjane Hello,
I’m sorry you’ve been having problems and can’t seem to find help. Have you talked with your doctor specifically about the rash and neuropathy? Make a list, related to those two things, of what’s bothering you and the specific questions you have. Then, make an appointment. Have you read through all the past posts on this discussion? They could be quite helpful to you. Can you call and get an appointment?
januaryjane
@januaryjane
@januaryjane
Posts: 175
Joined: Jun 25, 2019
@januaryjane Hello,
I’m sorry you’ve been having problems and can’t seem to find help. Have you talked with your doctor specifically about the rash and neuropathy? Make a list, related to those two things, of what’s bothering you and the specific questions you have. Then, make an appointment. Have you read through all the past posts on this discussion? They could be quite helpful to you. Can you call and get an appointment?
I just saw my derm and she thinks its a rheumatic issue. Yes, Im putting together ?s for my appt with a rheum in march.
Liked by Becky, Volunteer Mentor
Becky, Volunteer Mentor
@becsbuddy
@becsbuddy
Posts: 1416
Joined: Nov 09, 2018
I just saw my derm and she thinks its a rheumatic issue. Yes, Im putting together ?s for my appt with a rheum in march.
@januaryjane I’m so glad you’ve got an appointment and that you’re thinking of questions! You want to be an advocate for yourself! Maybe take your spouse or a friend to the appointment. Two sets of ears are always better than one. Will you let me know what you find out, please?
Liked by Dee
januaryjane
@januaryjane
@januaryjane
Posts: 175
Joined: Jun 25, 2019
Does anyone have flares in the face or ears? Or hands?? I see some affected by their feet, which i have, but face,ears, and hands are more often for me.
Liked by Becky, Volunteer Mentor
rwinney
@rwinney
@rwinney
Posts: 1246
Joined: Apr 28, 2019
Hands yes. Face used to get sharp stabbing pains in brows and temples. Now ever so often since being on Lyrica.
Liked by Becky, Volunteer Mentor
Becky, Volunteer Mentor
@becsbuddy
@becsbuddy
Posts: 1416
Joined: Nov 09, 2018
Hands yes. Face used to get sharp stabbing pains in brows and temples. Now ever so often since being on Lyrica.
@rwinney I’m so glad to hear that Lyrica (Gabapentin) has helped you! Do you have any side effects that bother you?
Liked by Teresa, Volunteer Mentor
rwinney
@rwinney
@rwinney
Posts: 1246
Joined: Apr 28, 2019
@rwinney I’m so glad to hear that Lyrica (Gabapentin) has helped you! Do you have any side effects that bother you?
Hi Becky
I felt tired at most but, acclimated. My exhaustion came with neuropathy prior to Lyrica anyhow.
Rachel
Liked by Becky, Volunteer Mentor
Does anyone have flares in the face or ears? Or hands?? I see some affected by their feet, which i have, but face,ears, and hands are more often for me.
Hello januaryjane, I do have flare in my hands, face, and ears from time to time. Usually they are in my feet. My symptoms have improved since I began taking Mexiletine. But I have found that certain foods, conditions, and stress/illness can still trigger flares.
@babyur4me
His mother is deceased it's just me and his maternal grandmother and she is 74