Erythromelalgia

Posted by txbren @txbren, Aug 27, 2018

Are there any patients with erythromelalgia? Have you been successfully treated at Mayo?

@hotfooted

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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@hotfooted Im glad like you it helps I don't they are recognized as a pain killer but I do get relief from my combo glad you do also

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@kanaazpereira

Hi @txbren,

There is an Erythromelalgia Clinic in Minnesota which serves as a focal point for clinical research at Mayo Clinic. The care at the Erythromelalgia Clinic is guided by a team of doctors, including specialists in dermatology, neurology and vascular medicine. These specialists work together to offer you specialized skin testing, an accurate diagnose and a treatment plan that meets your needs. This page – https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220 – has more details, and a video in which Mayo Clinic dermatologist Mark Davis, describes erythromelalgia and treatment options.

Along with @colleenyoung, I look forward to hearing from you and getting to know you better.

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i am still trying to hear from someone that has been treated @ Mayo for erythemamultiforma major

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@babyur4me

i am still trying to hear from someone that has been treated @ Mayo for erythemamultiforma major

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@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.

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@emfm4me

@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.

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Erythromelalgia is hard enough to get through the days with even if you're a mature lady like myself.. I can't imagine how you manage it having children to look after.. I do remember my younger days, raising our boys and struggling with Fibromyalgia.. When I went to bed at night I was so tired that it hurt even more to lie down.. so I know you have a tough time of it every day.. One thing that helped me back then was massage.. and I was fortunate enough to find a lovely older lady who kept me going through those years.. plus my sweet husband was great at massaging those crazy tender points with his elbow.. Gosh, it hurt.. but felt so good when he stopped.. A friend gave me the name of a highly recommended masseuse just today and I will be making that appointment tomorrow! But, even your kids can learn to give you good back rubs, too.. and press those sore spots with a pencil maybe.. That idea came from a one day foot massage class that I took years ago… pre EM, of course!! Blessings on you, dear…

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@txbren

I amon Gabapentin and Cymbalta. Burning has moved up my intire right side. I wonder why one side?

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Hi @txbren … I think of you often, as you are a fellow Texan dealing with some of the same health issues that I am… I do so hope you are doing well now.. There is hope for you pain.. I know, because I've been trying different foot rubs, etc. and have gotten a lot of relief so far.. I hope you get in touch again soon… I would like to know more about your journey with this awful problem…

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@emfm4me

@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.

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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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@johnbishop

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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Not good. it's attacking his mouth hands, back and legs.

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@babyur4me

Not good. it's attacking his mouth hands, back and legs.

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@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/

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His mother is deceased it's just me and his maternal grandmother and she is 74

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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..

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@hotfooted

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..

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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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@hotfooted

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..

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Hi @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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