Magnesium citrate is my best friend. Helps so much with the burning. I soak my hands and feet in mildly cold epson salt water for 10 minutes and pain subsides. Also I am taking lots of vitamins and drinking only water.
The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening... and I would like to hear from others with this malady of Erythromelalgia.
@kanaazpereira posted the following information above.
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.
Are there any exercises that you can do that you find helpful?
The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening... and I would like to hear from others with this malady of Erythromelalgia.
The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening... and I would like to hear from others with this malady of Erythromelalgia.
Thank you for moving my post to autoimmune issues.. As for diagnosis of Erythromelalgia, I had talked with my doctor about the problem, but until I had an actual big red flare in his office I don't think it was taken seriously.. Now he has a picture of my feet in a file and it's listed as another of my health issues. As for treatment, I was already on Cymbalta for depression and have been on antidepressants for years and was also taking Magnesium for constipation. Then we added Gabapentin and it seemed to help my burning feet in the beginning. But a couple of months ago I started itching all over so badly, so I did what I normally do and went on a search for the cause of that. Finally discovered that itching was sometimes a side effect of taking Gabapentin and Magnesium together. So I stopped both. I have lost weight, almost 10 lbs now and am unable to eat more than a few bites of food every few hours, altho when hunger hits me I MUST eat something fast. Just feel that urgent need and start to feel shaky. I am tired and weak and in neuropathic pain up through my thighs now. My husband would like to have his wife back and I don't blame him..
The erythromelalgia started April 24,2018. It is absolutely stopping everything I am able to do, even walking inside, because of the burning heat & pain. I am searching for new medicine, on Gabapentin now and it does nothing, and researching for a successful treatment!
@txbren It seems you and I have been trying the same treatments and searching for answers. Yes, this has definitely changed our lives, hasn't it! I carefully calculate how long I'll have to stand up before starting anything and expect you do the same. And I'm very careful about what I eat.. leaving out almost all sugar except for some fruit. Mangos seem to satisfy my sweet tooth best.
No, I haven't seen a specialist.. but have discussed my problems with my osteopath. He prescribed gabapentin for me, but I developed bad itching and had to stop that med. Now I'm only taking Cymbalta and Lisinopril. Cool my feet by spraying with cool water in shower mostly. For some reason I have been losing weight over the past couple of months and that may have helped some, too. The neuropathy has moved up my legs, past my knees and up to my groin. I am depressed more, and frightened..
No, I haven't seen a specialist.. but have discussed my problems with my osteopath. He prescribed gabapentin for me, but I developed bad itching and had to stop that med. Now I'm only taking Cymbalta and Lisinopril. Cool my feet by spraying with cool water in shower mostly. For some reason I have been losing weight over the past couple of months and that may have helped some, too. The neuropathy has moved up my legs, past my knees and up to my groin. I am depressed more, and frightened..
@hotfooted Hae you sen a specialist yet?I think its in you best ibtrest to see a sugestion of a endocinologist or neurologist Let us know how your doing ter seing. Dr
No, I haven't seen a specialist.. but have discussed my problems with my osteopath. He prescribed gabapentin for me, but I developed bad itching and had to stop that med. Now I'm only taking Cymbalta and Lisinopril. Cool my feet by spraying with cool water in shower mostly. For some reason I have been losing weight over the past couple of months and that may have helped some, too. The neuropathy has moved up my legs, past my knees and up to my groin. I am depressed more, and frightened..
In response to the OP, I was diagnosed with Erythromelalgia (EM) one year ago at Mayo Clinic - Jacksonville. It was a relief because my Rheumatologist in Chicago had misdiagnosed me. Since then, I relocated to Jacksonville area and continue to follow up with my Rheumatologist at Mayo. I’ve also been diagnosed with Fibromyalgia (FM) and Ocular Migraines subsequently. The past year has been full of emotions and chronic pain. EM and FM have been tough, especially trying to figure out personal triggers, and losing the ability to have the very active/athletic life I once had. My kids are still young, so I miss running around with them. Sometimes the flares are so bad I’m unable to walk properly. Currently I take aspirin, gabapentin, and CBD oil. They all help slightly, but I’m still searching for a better medicine. To anyone newly diagnosed: You are not alone. I wish for you a clearer path to health.
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Magnesium citrate is my best friend. Helps so much with the burning. I soak my hands and feet in mildly cold epson salt water for 10 minutes and pain subsides. Also I am taking lots of vitamins and drinking only water.
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2 ReactionsHello @hotfooted, welcome to Mayo Clinic Connect.
@kanaazpereira posted the following information above.
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.
Are there any exercises that you can do that you find helpful?
The pain is much worse if I stand for very long.. I have to keep my feet raised, because if they hang down to the floor they turn bright red and the burning gets awful. My feet feel different temperatures .. hot hot toes and ball of foot, but cold cold heels when flaring. The flares begin with either standing too long or them getting too hot. I avoid sugar now because it seems to make it worse. I distract myself as much as I can by playing games, watching entertaining or educational videos, following my dollhouse miniatures hobby and buying and selling online. I stay in touch with my family in other states by phone and that means a lot to me. My dear husband is wonderful to do the shopping and cooking, altho I still do kitchen detail and some laundry. I'm fortunate that we have a house cleaning team that come once a month.Other than the burning feet and SFN I am healthy, but lack of exercise is taking a toll on that, I'm sure! Thanks for listening... and I would like to hear from others with this malady of Erythromelalgia.
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1 ReactionHi @hotfooted, I add my welcome. As @johnbishop recommended, I have moved your message to this existing discussion about Erythromelalgia in the Autoimmune Diseases group so that you can meet others like @katelynntiff @summershaddow @txbren @jcmoffatt.
You may also be interested in this discussion
– Burning Feet syndrome https://connect.mayoclinic.org/discussion/burning-feet-syndrome/
Hotfooted, have you had any treatment or seen a specialist?
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2 ReactionsThank you for moving my post to autoimmune issues.. As for diagnosis of Erythromelalgia, I had talked with my doctor about the problem, but until I had an actual big red flare in his office I don't think it was taken seriously.. Now he has a picture of my feet in a file and it's listed as another of my health issues. As for treatment, I was already on Cymbalta for depression and have been on antidepressants for years and was also taking Magnesium for constipation. Then we added Gabapentin and it seemed to help my burning feet in the beginning. But a couple of months ago I started itching all over so badly, so I did what I normally do and went on a search for the cause of that. Finally discovered that itching was sometimes a side effect of taking Gabapentin and Magnesium together. So I stopped both. I have lost weight, almost 10 lbs now and am unable to eat more than a few bites of food every few hours, altho when hunger hits me I MUST eat something fast. Just feel that urgent need and start to feel shaky. I am tired and weak and in neuropathic pain up through my thighs now. My husband would like to have his wife back and I don't blame him..
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Helpful -
Hug
3 Reactions@txbren It seems you and I have been trying the same treatments and searching for answers. Yes, this has definitely changed our lives, hasn't it! I carefully calculate how long I'll have to stand up before starting anything and expect you do the same. And I'm very careful about what I eat.. leaving out almost all sugar except for some fruit. Mangos seem to satisfy my sweet tooth best.
-
Like -
Helpful -
Hug
1 ReactionNo, I haven't seen a specialist.. but have discussed my problems with my osteopath. He prescribed gabapentin for me, but I developed bad itching and had to stop that med. Now I'm only taking Cymbalta and Lisinopril. Cool my feet by spraying with cool water in shower mostly. For some reason I have been losing weight over the past couple of months and that may have helped some, too. The neuropathy has moved up my legs, past my knees and up to my groin. I am depressed more, and frightened..
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Helpful -
Hug
1 Reaction@hotfooted Hae you sen a specialist yet?I think its in you best ibtrest to see a sugestion of a endocinologist or neurologist Let us know how your doing ter seing. Dr
Hi @hotfooted, I'm not sure if it's an option for you but Mayo Clinic Rochester has an Erythromelalgia Clinic that may be able help you.
Erythromelalgia Clinic in Minnesota
-- https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220
In response to the OP, I was diagnosed with Erythromelalgia (EM) one year ago at Mayo Clinic - Jacksonville. It was a relief because my Rheumatologist in Chicago had misdiagnosed me. Since then, I relocated to Jacksonville area and continue to follow up with my Rheumatologist at Mayo. I’ve also been diagnosed with Fibromyalgia (FM) and Ocular Migraines subsequently. The past year has been full of emotions and chronic pain. EM and FM have been tough, especially trying to figure out personal triggers, and losing the ability to have the very active/athletic life I once had. My kids are still young, so I miss running around with them. Sometimes the flares are so bad I’m unable to walk properly. Currently I take aspirin, gabapentin, and CBD oil. They all help slightly, but I’m still searching for a better medicine. To anyone newly diagnosed: You are not alone. I wish for you a clearer path to health.
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Like -
Helpful -
Hug
2 Reactions