Erythromelalgia

Posted by txbren @txbren, Aug 27, 2018

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

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
https://connect.mayoclinic.org/discussion/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!
https://connect.mayoclinic.org/discussion/search-it-can-help-you/

John

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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..

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@hotfooted

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..

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@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.

Liked by hotfooted

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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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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..

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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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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

Liked by hotfooted

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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

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?

Liked by hotfooted

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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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