@babyur4me I am being treated at the Jacksonville Mayo Clinic for Erythromelalgia. At Mayo, I was quickly and accurately diagnosed. I am happy with the care I am receiving from my Rheumatologist. They do not have a magic bullet for this disease, though. Treatment focuses on symptoms, and may vary by individual.
Hello @babyur4me, thank you for the private message. @emfm4me responded to your last post with her experience of being treated at the Jacksonville Mayo Clinic for Erythromelalgia. If you click the View & Reply button in the email notification you receive, it will take you to this post in the discussion where you last posted. You mentioned your grandson's symptoms are more like Stevens-Johnson syndrome. Mayo Clinic has some information here:
Hello @babyur4me, thank you for the private message. @emfm4me responded to your last post with her experience of being treated at the Jacksonville Mayo Clinic for Erythromelalgia. If you click the View & Reply button in the email notification you receive, it will take you to this post in the discussion where you last posted. You mentioned your grandson's symptoms are more like Stevens-Johnson syndrome. Mayo Clinic has some information here:
@babyur4me you mentioned in an earlier post that your grandson is 29 and that you are getting ready for a lung cancer operation at age 80. This must be terribly stressful for you trying to help him get seen at Mayo Clinic Rochester while dealing with your own health condition. Are your grandson's parents able to help him navigate the system to seek help from Mayo Clinic?
Here are some Mayo Clinic links that may be helpful.
If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
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..
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.
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.
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.
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.
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Hello @babyur4me, thank you for the private message. @emfm4me responded to your last post with her experience of being treated at the Jacksonville Mayo Clinic for Erythromelalgia. If you click the View & Reply button in the email notification you receive, it will take you to this post in the discussion where you last posted. You mentioned your grandson's symptoms are more like Stevens-Johnson syndrome. Mayo Clinic has some information here:
Stevens-Johnson syndrome
-- https://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/diagnosis-treatment/drc-20355942
@babyur4me how is your grandson doing now?
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1 ReactionNot good. it's attacking his mouth hands, back and legs.
@babyur4me you mentioned in an earlier post that your grandson is 29 and that you are getting ready for a lung cancer operation at age 80. This must be terribly stressful for you trying to help him get seen at Mayo Clinic Rochester while dealing with your own health condition. Are your grandson's parents able to help him navigate the system to seek help from Mayo Clinic?
Here are some Mayo Clinic links that may be helpful.
If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
You can find out more about billing and insurance at Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare
Charitable Care and Financial Assistance at Mayo Clinic
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
Rochester, MN Charitable Lodging
-- https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/
His mother is deceased it's just me and his maternal grandmother and she is 74
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/
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1 ReactionHi @hotfooted, as @johnbishop suggested above, I moved your message to this existing discussion so that you can meet other members talking about Erythromelalgia.
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1 ReactionHello 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.
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2 ReactionsI 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.
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1 ReactionI 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.
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