Erythromelalgia

Posted by txbren @txbren, Aug 27, 2018

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

@alangrd

Thank you @johnbishop! I actually have already spoken with Dr. Ratchford. She recommended seeing the other specialists first as she is an adult provider and my daughter is only 16. I do plan to follow back up with her (via email) as she suggested. She was incredibly kind to assist me since my daughter was not a patient of hers. I appreciate your response!

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@alangrd, that is really good to hear! Can you give us an update when you are able to follow up with Dr. Ratchford?

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@alangrd

Hello, I am hoping there is someone here that can help me. I have a 16 year old daughter who is currently being seen by numerous specialists to determine if she in fact has erythromelalgia. Her primary problem is in her hands which swell, become very red and then subsequently severely painful after activity. She has some mild feet involvement which is generally just color change. She has been seen by orthopedics, rheumatology, neurology and today was cardiology. The majority of her providers are at Johns Hopkins. All rheumatology studies were negative. The neurologist is the provider which suggested erythromelalgia and we are looking into possible genetic testing. The neurologist recommended starting with supplemental magnesium for a month and then return to clinic for possible start on gabapentin. The Cardiologist found nothing abnormal and did not believe there was a cardiac component. The frustrating part is no one has really heard of the condition or seen a patient with it so we are sort of spinning in circles. My insurance does not cover Mayo Clinic, but there must be other providers (especially with Johns Hopkins in our backyard) who have some sort of knowledge to let us know if this is, or is not the condition. Does anyone have any suggestions or recommendations of what to do next so that we can find out if she does in fact have this and if not….move on to the next step. Thank you in advance!!

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Hello @alangrd, I have had Erythromelalgia for about two and a half years now. Sorry to hear your daughter is having these issues. I was initially misdiagnosed, but went to Mayo Clinic in Jacksonville, FL and was quickly diagnosed. It does not sound like that is an option for you. What I can add with regard to genetic testing is that it may or may not give definitive answers. Because it will give positive results for about 80% of Erythromelalgia gene carriers, one can still have the condition and test negative. The test only checks on one particular gene (I believe it’s SN-9). That’s what happened to me. But my doctors still believe that a full X chromosome work up would have yielded positive results.

For your daughter, I can only suggest a log of anytime the symptoms occur. It occurs with exercise for her, but are there any other triggers? Too much salt, spicy food, sugary food, heat/humidity, stress, cardio/exercise, etc. can all trigger flares. Try and take pictures of the flares to show doctors. Also, what time of day is it worse? Erythromelalgia is almost always worse in the evening/night time. Of course, everyone is a bit different but I hope this may help you a bit. Good luck to your daughter on finding relief for her condition.

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@emfm4me

Hello @alangrd, I have had Erythromelalgia for about two and a half years now. Sorry to hear your daughter is having these issues. I was initially misdiagnosed, but went to Mayo Clinic in Jacksonville, FL and was quickly diagnosed. It does not sound like that is an option for you. What I can add with regard to genetic testing is that it may or may not give definitive answers. Because it will give positive results for about 80% of Erythromelalgia gene carriers, one can still have the condition and test negative. The test only checks on one particular gene (I believe it’s SN-9). That’s what happened to me. But my doctors still believe that a full X chromosome work up would have yielded positive results.

For your daughter, I can only suggest a log of anytime the symptoms occur. It occurs with exercise for her, but are there any other triggers? Too much salt, spicy food, sugary food, heat/humidity, stress, cardio/exercise, etc. can all trigger flares. Try and take pictures of the flares to show doctors. Also, what time of day is it worse? Erythromelalgia is almost always worse in the evening/night time. Of course, everyone is a bit different but I hope this may help you a bit. Good luck to your daughter on finding relief for her condition.

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@emfm4me What is Erythromelalgia? to @alangrd I hope you find out what is wrong with you and your daughter. Mayo is a good place to go. I had a 9 hour back fuse surgery there. My daughter has all kinds of problems too, over weight, sinus infections, migraines, you name it she will have it. Her doctor took her off work because of the Covid-19 Her skin is also very sensitiive.

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Thank you very much. She will follow up with her neurologist at the end of this week. The genetic testing will be a panel of many genes. We finally got our quote from the company and will not owe as much as I expected so we are just waiting to get the kit in the mail. We have kept a log for the last few years. That is really good advice because the photos helped the doctors immensely. Her triggers are definitely heat and exercise. I just want her to feel better. I very much appreciate everyone's help.

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@runwthme

Hello,
I’m at a loss as to where this should be posted, so I decided here in chronic pain. I have Erythromelalgia and I can’t find anyone here in the Houston medical center to help. I’ve tried neurology, dermatologists, pain specialist, vascular/ cardiologist And last but not least my rheumatologist who is treating me for several other conditions. I know it is extremely rare so I’m trying to find a rare disease specialist. Any comments or If this can be forwarded to the correct discussion group would be much appreciated!

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@runwthme Hi, I do know that this illness is discussed within the Neuropathy group on Mayo Connect. Go to that group and scroll the different topics, and you might find it there. I know I have discussed your illness with others within the Neuropathy group, as I have Neuropathy, and people who have it often have the severe burning that I assume you are experiencing. However, unfortunately, I have not read much about anything that helps it. I do have a product that I use that is not approved by the FDA, but it works wonders for burning, stabbing, aching, etc. of Neuropathy. Because this product is not approved by the FDA, the moderators on Connect would rather I private message about this product. Reach me privately at LoriRenee1 for a private message, if you are interested in learning more. My best to you, Lori

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Hello,
I’m at a loss as to where this should be posted, so I decided here in chronic pain. I have Erythromelalgia and I can’t find anyone here in the Houston medical center to help. I’ve tried neurology, dermatologists, pain specialist, vascular/ cardiologist And last but not least my rheumatologist who is treating me for several other conditions. I know it is extremely rare so I’m trying to find a rare disease specialist. Any comments or If this can be forwarded to the correct discussion group would be much appreciated!

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@runwthme

Hello,
I’m at a loss as to where this should be posted, so I decided here in chronic pain. I have Erythromelalgia and I can’t find anyone here in the Houston medical center to help. I’ve tried neurology, dermatologists, pain specialist, vascular/ cardiologist And last but not least my rheumatologist who is treating me for several other conditions. I know it is extremely rare so I’m trying to find a rare disease specialist. Any comments or If this can be forwarded to the correct discussion group would be much appreciated!

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Hi @runwthme and welcome to Mayo Clinic Connect. I have moved your message to this existing discussion about Erythromelalgia in the Autoimmune Diseases and Neuropathy groups. Here you can connect with other members talking about Erythromelalgia like @txbren @jcmoffatt @summershaddow @hotfooted @emfm4me and others. If you click VIEW & REPLY in the email notification, it will bring you to the discussion and you can scroll through past posts.

Runwthme, what symptoms does erythromelalgia cause you? How do you manage them now?

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@runwthme

Hello,
I’m at a loss as to where this should be posted, so I decided here in chronic pain. I have Erythromelalgia and I can’t find anyone here in the Houston medical center to help. I’ve tried neurology, dermatologists, pain specialist, vascular/ cardiologist And last but not least my rheumatologist who is treating me for several other conditions. I know it is extremely rare so I’m trying to find a rare disease specialist. Any comments or If this can be forwarded to the correct discussion group would be much appreciated!

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@runwthme
You can put Erythromelalgia into the search window at the top of this page (click the little hourglass symbol) and you will find a few places on Connect where this is mentioned. Other people have mentioned having this illness, perhaps one of their comments might be helpful to you. Just reading a very cursory sample of info it sounds like it has similarities to peripheral neuropathy, especially in hands and feet. Although I suppose that could be misleading without knowing more. Best, Hank

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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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It's been a while since I've been on here and I thought I'd let you and folks know another recent trick I've discovered to keep my feet cool while I sleep.. The weather has turned a bit cooler here in Oregon lately and I've been needing my heating mattress pad on, but then I have the problem of my feet getting too hot and flaring during the night.. Not good!! That's been keeping me awake a few hours every night.. Well, I went to the fabric store and bought 1 yard of thermal barrier quilted fabric like used on ironing boards.. Now that protects my feet from the heat and I can sleep all night.. I do have to sleep in socks and that keeps me comfortable.. On really cool nights I wear my husbands Wigwam wool socks to bed.. His socks are big and loose and that feels better too.. I hope this tip helps someone else get a good night's sleep, too…

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@hotfooted

It's been a while since I've been on here and I thought I'd let you and folks know another recent trick I've discovered to keep my feet cool while I sleep.. The weather has turned a bit cooler here in Oregon lately and I've been needing my heating mattress pad on, but then I have the problem of my feet getting too hot and flaring during the night.. Not good!! That's been keeping me awake a few hours every night.. Well, I went to the fabric store and bought 1 yard of thermal barrier quilted fabric like used on ironing boards.. Now that protects my feet from the heat and I can sleep all night.. I do have to sleep in socks and that keeps me comfortable.. On really cool nights I wear my husbands Wigwam wool socks to bed.. His socks are big and loose and that feels better too.. I hope this tip helps someone else get a good night's sleep, too…

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Hi @hotfooted , that is a very apropos Connect name! My wife has incredibly hot feet as well. She actually sleeps with her feet uncovered and sticking out the end of the bed. And it's so strange because when we were married she hated cold feet and was always putting them right against my legs all night to keep them warm. I usually didn't mind as I was always too hot anyway. But what a difference a little neuropathy makes! She now has a fan blowing on them 24/7. I'm sure your idea of the thermal fabric will sound useful to someone else though. Glad to have you back, since you say you have been off Connect for a while. Nice to hear from you. Best, Hank

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@colleenyoung

Hi @runwthme and welcome to Mayo Clinic Connect. I have moved your message to this existing discussion about Erythromelalgia in the Autoimmune Diseases and Neuropathy groups. Here you can connect with other members talking about Erythromelalgia like @txbren @jcmoffatt @summershaddow @hotfooted @emfm4me and others. If you click VIEW & REPLY in the email notification, it will bring you to the discussion and you can scroll through past posts.

Runwthme, what symptoms does erythromelalgia cause you? How do you manage them now?

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Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉

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@runwthme

Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉

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@runwthme
I am not familiar with your ailments or conditions. However, my heart goes out to you for all you are enduring. I think you should not wait, but rather be on the hunt now for a GOOD health practitioner, a medical doctor if possible, certainly. But if you can't find anyone in the medical field who can help and understand your situation (and it sounds as if that is the case at the moment), don't automatically rule out alternative health practitioners such as naturopathic, chiropractic, chinese medicine practitioners, or whatever. Be open to what comes you way, but do put your mind toward finding the person who is right for YOU. That is the best way to eventually connect with the right help that you personally need. This forum was a great place for you to come, there are a ton of networking possibilities here.

Others will likely have some more specific ideas for you which might address your conditions. This is just my own feeling as to what you should be doing for yourself, i.e. start now (or I guess more accurately, don't stop) to seek help for yourself. Hope this helps.

Best, Hank

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