Anyone out there with Erythromelalgia?

Were they able to do anything different for you while you were in the hospital? How did they treat Your flare up? Are you taking any medicines or treatments that work? Yes, it is frustrating when other people just don’t understand. Maybe if you showed your partner some of the other peoples posts here, then your partner would understand better, because they would see that there are many other people just like you who have horrible symptoms and who deal with devastating pain.

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 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

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

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.

Has anyone been to Mayo Clinic For erythromelalgia Treatment and was successful?

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.