I was hospitalized due to swelling and severe pain. We thought it could have been a recurrence of cellulitis I had last summer (due to a skin biopsy gone very wrong). Was treated with antibiotics, but we all now doubt that there was any infection present. All the attending doctors confirmed what I already knew. Erythromelalgia. They told me to up the Gabapentin and take one aspirin a day! If that doesn't work after 30 days, try Cymbalta. That's it.
Oh, thank you! Unfortunately, I had bad reactions to Cymbalta and gabapentin, so I cannot take those, there was nothing I could take, I tried them all and they did not work or I had really bad side effects. But I have something that may help you. I cannot stand socks and shoes, so I wear huge shoes or very soft stretchy cloth ones From sketchers, but as far as socks go I was asking my sister for her old socks to wear that were loose, but they did not last long before they were holes in them because they were old. But I found socks online! I can’t even tell that I have them on I am so happy. They are so soft but they also stay up! And they do not slip down. One time I got them on Amazon and one time I got them on walmart.com “Hugh Ugoli Bamboo loose fit diabetic crew socks, soft, wide, and stretchy with seamless toe and non-binding top”. They are wonderful! I have no marks on my legs from them. And they do not hurt
Thank you so much for helping me, but I clicked on that link, and all I got was a big warning, And it would not let me go there. I could not get around it, I could not get to the Jacksonville link. This is what it says: is there another way you can send me that link?
This Connection Is Not Private
This website may be impersonating
"mayoclinic.in" to steal your personal or financial information. You should go back to the previous page.
Go Back
Safari warns you when a website has a certificate that is not
I’m so sorry @nancyc777 I had two letters that shouldn’t have been there! Probably from autocorrect. Here is the correct one: https://mayocl.in/1mtmR63
I live in Florida too. When I read your post, I cried. I just got out of a 4 day hospital stay due to a horrible flare and my partner of 22 years said "maybe you need to go outside and get some sunshine & vitamin D". I was stunned and heartbroken by his cluelessness. He evidently thinks I'm just lazy. No one understands this. I have neuropathy as well.
Ive had to explain to several doctors, the funny thing about paralysis is that it can be parylyzing 😭. Telling someone to do exercise because that works for a well person may be like telling someone without the right levels of insulin to eat sugar anyways....
There are so many important substances made in the dendrites, and if for some reason they get damaged, these neurotransmitters may not get made through other pathways. GABA for instance. People exercise to increase gaba, but if the body has reduced gaba production then excercise might cause complications....
In fact it often makes my body tense up, until I take gaba orally. Stretching can worsen the problem, unless I take the gaba. Gaba releases the muscle spasm. Please seek medical attention before self treating, just giving an example of known necessary neurotransmitter made in dendrites but not usually adressed by medical treatments. Would be like denying a diabetic insulin and feeding the sugar. Or like knowing there's a thyroid issue but not replacing the thyroid hormones....
It's a malfunction in production. There's many more examples, and they need to be treated.
I have been diagnosed with MS. But have gamut of autoimmune issues.
Good luck, and blessings
I have erythromelalgia. I have tried almost all of the meds. and they either did not work or had intolerable side effects. I have not been to a Mayo clinic. I live in Florida. There is a Mayo clinic in Jacksonville Florida, but I do not want to go to one more doctor only to find out once again that there is no help for me. I have had every test there is for burning electrified pain. I can barely walk around the house. I can do so very little as I spend most of my day on the couch icing and elevating. I had been going to church on Sunday mornings, but now I cannot even do that. Just about everything has been taken from me because of this pain. My list to do keeps growing, and I cannot get much done. People go shopping for me, and bring me meals. I cannot stand long enough to cook. I don't have money to go to assisted living. The pain started in 2017 late in the day and pretty mild at the time. But now it is unbelievable! It used to be that I had relief by being in bed all nite but now it even is burning electrified pain at nite, robbing me of sleep. I would go to Mayo clinic if I knew there was help for me, but I cannot stand to go see one more Doctor only to find no help for me. I have watched all of the Dr. Mark Davis videos and I cannot see anything that would help. I have not tried Plaquenil. Perhaps I should look into that. I would have to get motivated to try one more. If there is ever a break-thru for this Erythromelalgia I would love to know.
How are you doing? I have erythromelalgia and I spend most of my day on the couch elevating and icing. I feel like my life has been taken away from me. I have had no success with any medication. I was wondering if you had found anything that works for you or have you been to the mayo clinic? I pray for all of us out there, this is such a debilitating disease, and no one can see the pain but we can for sure feel it.
nancyc777 | @nancyc777 | 1 second ago
How are you doing? I have erythromelalgia and I spend most of my day on the couch elevating and icing. I feel like my life has been taken away from me. I have had no success with any medication. I was wondering if you had found anything that works for you or have you been to the mayo clinic? I pray for all of us out there, this is such a debilitating disease, and no one can see the pain but we can for sure feel it.
How are you doing? I have erythromelalgia and I spend most of my day on the couch elevating and icing. I feel like my life has been taken away from me. I have had no success with any medication. I was wondering if you had found anything that works for you or have you been to the mayo clinic? I pray for all of us out there, this is such a debilitating disease, and no one can see the pain but we can for sure feel it.
I have been to Mayo's in Rochester twice in 2006. They ran all kinds of tests and confirmed I have EM. Not much they can do other then prescribe Gabapentin and pain cream. It eventually got better but two years ago came back with a vengeance. My feet und up to my legs get very hot at night and I use Asper cream with Lidocaine. It give me some relief for a couple of hours. Wearing shoes during the warm weather is a torture. There is a lot of research by Mayo's, Yale, the VA and overseas as well but mostly for inherited EM. My is secondary wish an unknown cause. Have your read the articles published by Dr. Jay Cohen. He was a dermatologist who suffered from EM and did a lot of research and piblished some of it. There is also the Erythromelalgia Association on the web and a list of members who all suffer from EM. I e-mailed several of them and none of them is having much luck with a cure.
Good luck to you.
I have been to Mayo's in Rochester twice in 2006. They ran all kinds of tests and confirmed I have EM. Not much they can do other then prescribe Gabapentin and pain cream. It eventually got better but two years ago came back with a vengeance. My feet und up to my legs get very hot at night and I use Asper cream with Lidocaine. It give me some relief for a couple of hours. Wearing shoes during the warm weather is a torture. There is a lot of research by Mayo's, Yale, the VA and overseas as well but mostly for inherited EM. My is secondary wish an unknown cause. Have your read the articles published by Dr. Jay Cohen. He was a dermatologist who suffered from EM and did a lot of research and piblished some of it. There is also the Erythromelalgia Association on the web and a list of members who all suffer from EM. I e-mailed several of them and none of them is having much luck with a cure.
Good luck to you.
Thank you so very much for your reply and your time. I had been wondering if there was a treatment or a medication that I was overlooking . I guess there is not. I feel bad for you at night time, night time is the worst time when we can’t get sleep. I totally understand the torture of shoes and socks. Dr. Jay Cohen Sounds familiar, I will look him back up. And I will look into the Erythromelalgia association And find other members with EM. Thank you for telling me that you have contacted others and you have found no help also. I did come across this week a med. called pentoxiphylline. It helps a few people by helping with the viscosity of the red blood cells that could possibly get congested in the small arteries that get dilated because of the dysfunction of nerves and blood vessels. It also states it has many anti-inflammatory effects. My pharmacy had to order it so I have not started on it yet. I asked my primary doctor if I could try it after I read about it and she will start out with a very low-dose to see if I have any bad reaction to it. in another article, it states that it really does not do much. I had bad reactions to so many of the medication for the pain. My leg swelled up When I tried gabapentin. If the medicines did not give me a bad reaction, and I was able to take it, they did not help at all. The pentoxifylline Helps the blood flow by making the blood cells more slippery. I pray you are able to find some relief, and that you can get things done on your overgrowing list of things to do. God bless you.
Dr. Cohen tried and researched many natural products. Some helped, some made it worse. But what works for one might worsen the EM in another. We are all programmed different. Besides the EM I also have Raynauds and Neuropathy. So it's a catch 22 for me. If I take something for the EM it worsens the Raynauds and vise versa. I try to exercise as much as I can and stay positive. I wish you all the best.
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Oh, thank you! Unfortunately, I had bad reactions to Cymbalta and gabapentin, so I cannot take those, there was nothing I could take, I tried them all and they did not work or I had really bad side effects. But I have something that may help you. I cannot stand socks and shoes, so I wear huge shoes or very soft stretchy cloth ones From sketchers, but as far as socks go I was asking my sister for her old socks to wear that were loose, but they did not last long before they were holes in them because they were old. But I found socks online! I can’t even tell that I have them on I am so happy. They are so soft but they also stay up! And they do not slip down. One time I got them on Amazon and one time I got them on walmart.com “Hugh Ugoli Bamboo loose fit diabetic crew socks, soft, wide, and stretchy with seamless toe and non-binding top”. They are wonderful! I have no marks on my legs from them. And they do not hurt
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2 ReactionsI’m so sorry @nancyc777 I had two letters that shouldn’t have been there! Probably from autocorrect. Here is the correct one: https://mayocl.in/1mtmR63
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Hug
1 ReactionIve had to explain to several doctors, the funny thing about paralysis is that it can be parylyzing 😭. Telling someone to do exercise because that works for a well person may be like telling someone without the right levels of insulin to eat sugar anyways....
There are so many important substances made in the dendrites, and if for some reason they get damaged, these neurotransmitters may not get made through other pathways. GABA for instance. People exercise to increase gaba, but if the body has reduced gaba production then excercise might cause complications....
In fact it often makes my body tense up, until I take gaba orally. Stretching can worsen the problem, unless I take the gaba. Gaba releases the muscle spasm. Please seek medical attention before self treating, just giving an example of known necessary neurotransmitter made in dendrites but not usually adressed by medical treatments. Would be like denying a diabetic insulin and feeding the sugar. Or like knowing there's a thyroid issue but not replacing the thyroid hormones....
It's a malfunction in production. There's many more examples, and they need to be treated.
I have been diagnosed with MS. But have gamut of autoimmune issues.
Good luck, and blessings
-
Like -
Helpful -
Hug
1 ReactionI have erythromelalgia. I have tried almost all of the meds. and they either did not work or had intolerable side effects. I have not been to a Mayo clinic. I live in Florida. There is a Mayo clinic in Jacksonville Florida, but I do not want to go to one more doctor only to find out once again that there is no help for me. I have had every test there is for burning electrified pain. I can barely walk around the house. I can do so very little as I spend most of my day on the couch icing and elevating. I had been going to church on Sunday mornings, but now I cannot even do that. Just about everything has been taken from me because of this pain. My list to do keeps growing, and I cannot get much done. People go shopping for me, and bring me meals. I cannot stand long enough to cook. I don't have money to go to assisted living. The pain started in 2017 late in the day and pretty mild at the time. But now it is unbelievable! It used to be that I had relief by being in bed all nite but now it even is burning electrified pain at nite, robbing me of sleep. I would go to Mayo clinic if I knew there was help for me, but I cannot stand to go see one more Doctor only to find no help for me. I have watched all of the Dr. Mark Davis videos and I cannot see anything that would help. I have not tried Plaquenil. Perhaps I should look into that. I would have to get motivated to try one more. If there is ever a break-thru for this Erythromelalgia I would love to know.
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1 ReactionHas anyone been to Mayo Clinic For erythromelalgia Treatment and was successful?
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1 ReactionHow are you doing? I have erythromelalgia and I spend most of my day on the couch elevating and icing. I feel like my life has been taken away from me. I have had no success with any medication. I was wondering if you had found anything that works for you or have you been to the mayo clinic? I pray for all of us out there, this is such a debilitating disease, and no one can see the pain but we can for sure feel it.
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Helpful -
Hug
1 Reactionnancyc777 | @nancyc777 | 1 second ago
How are you doing? I have erythromelalgia and I spend most of my day on the couch elevating and icing. I feel like my life has been taken away from me. I have had no success with any medication. I was wondering if you had found anything that works for you or have you been to the mayo clinic? I pray for all of us out there, this is such a debilitating disease, and no one can see the pain but we can for sure feel it.
-
Like -
Helpful -
Hug
1 ReactionI have been to Mayo's in Rochester twice in 2006. They ran all kinds of tests and confirmed I have EM. Not much they can do other then prescribe Gabapentin and pain cream. It eventually got better but two years ago came back with a vengeance. My feet und up to my legs get very hot at night and I use Asper cream with Lidocaine. It give me some relief for a couple of hours. Wearing shoes during the warm weather is a torture. There is a lot of research by Mayo's, Yale, the VA and overseas as well but mostly for inherited EM. My is secondary wish an unknown cause. Have your read the articles published by Dr. Jay Cohen. He was a dermatologist who suffered from EM and did a lot of research and piblished some of it. There is also the Erythromelalgia Association on the web and a list of members who all suffer from EM. I e-mailed several of them and none of them is having much luck with a cure.
Good luck to you.
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Like -
Helpful -
Hug
1 ReactionThank you so very much for your reply and your time. I had been wondering if there was a treatment or a medication that I was overlooking . I guess there is not. I feel bad for you at night time, night time is the worst time when we can’t get sleep. I totally understand the torture of shoes and socks. Dr. Jay Cohen Sounds familiar, I will look him back up. And I will look into the Erythromelalgia association And find other members with EM. Thank you for telling me that you have contacted others and you have found no help also. I did come across this week a med. called pentoxiphylline. It helps a few people by helping with the viscosity of the red blood cells that could possibly get congested in the small arteries that get dilated because of the dysfunction of nerves and blood vessels. It also states it has many anti-inflammatory effects. My pharmacy had to order it so I have not started on it yet. I asked my primary doctor if I could try it after I read about it and she will start out with a very low-dose to see if I have any bad reaction to it. in another article, it states that it really does not do much. I had bad reactions to so many of the medication for the pain. My leg swelled up When I tried gabapentin. If the medicines did not give me a bad reaction, and I was able to take it, they did not help at all. The pentoxifylline Helps the blood flow by making the blood cells more slippery. I pray you are able to find some relief, and that you can get things done on your overgrowing list of things to do. God bless you.
-
Like -
Helpful -
Hug
2 ReactionsDr. Cohen tried and researched many natural products. Some helped, some made it worse. But what works for one might worsen the EM in another. We are all programmed different. Besides the EM I also have Raynauds and Neuropathy. So it's a catch 22 for me. If I take something for the EM it worsens the Raynauds and vise versa. I try to exercise as much as I can and stay positive. I wish you all the best.
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Like -
Helpful -
Hug
1 Reaction