I haven't been to an Urgent Care Clinic because I haven't had a flareup for a while. I dropped about 10 pounds and have been plant based for about four years now and I'm finding that the EM is in retreat. Correlation or causation? Not sure. But grateful anyway. I do find that, if I take a trip to a hot locale and walk around a lot, it brings on a flare. But I haven't been anywhere hot lately due to Covid making travel less appealing.
Take pictures of your flares, and document all your symptoms. I have kept a photo-log since the beginning. It has been invaluable when discussing, or proving, what you are referring to.
Alternatively, I have made it a point to drive myself 50 miles to the closest walk-in clinic while the flares are happening. As soon as the attending physician enters the room, pull off your socks and show them. There seems to be a hesitancy these days towards “hands on” . But if they won’t look....then you have to show.
Such a good idea to take photos of medical problems if visible.... i even take them of my urine analysis sticks because they are different each time; also now many medical appointments are over telephone since Covid so I can email a photo... even last visit the nurse took photo of the patch on my scalp to show another doctor... only thing is i am having burning different parts of body but not always showing pink/red...also a rash top of chest and around neck that no one can see but i can feel with fingertips so hard to take photo... but yes good idea!
I have had erythromelalgia for 3 years and have tried a dozen different medications. Recently tried acupuncture with no relief. Nights are the worst with me using cool water, trying to go to sleep only to have another flare. I have read a couple of medical studies and shared them with my PCP. We're trying Melixitine next. Has anyone had any success with this drug?
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.
Recent probable diagnosis of Erythromilgia. EM. Have cold feet then hot tingly feet. Some mild red blotches on arms and red palms.
Hot weather bad.
Taking Pregabalin. Who has been successful with this or other meds.
Recent probable diagnosis of Erythromilgia. EM. Have cold feet then hot tingly feet. Some mild red blotches on arms and red palms.
Hot weather bad.
Taking Pregabalin. Who has been successful with this or other meds.
Hi @cherman, Welcome to Connect. While we wait for other members to share suggestions I thought I would share the following information I found that might be helpful.
"The aim of these therapies is to reduce the negative effects of stress and pain—through practicing relaxation, reframing unhealthy emotions, and training the ..."
-- The Patient's Guide to Erythromelagia from The Erythromelalgia Association: https://erythromelalgia.org/wp-content/uploads/2017/09/TEA-PatientGuideBook-1.pdf
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I haven't been to an Urgent Care Clinic because I haven't had a flareup for a while. I dropped about 10 pounds and have been plant based for about four years now and I'm finding that the EM is in retreat. Correlation or causation? Not sure. But grateful anyway. I do find that, if I take a trip to a hot locale and walk around a lot, it brings on a flare. But I haven't been anywhere hot lately due to Covid making travel less appealing.
Anyone dx with MS and breast cancer?
Is Mayo Clinic performing research on erythromelalgia?
Thanks!
Beth Coimbra
I thought I had erythromelalgia but it turned out to be chilblains and Niphedipine cured it.
Such a good idea to take photos of medical problems if visible.... i even take them of my urine analysis sticks because they are different each time; also now many medical appointments are over telephone since Covid so I can email a photo... even last visit the nurse took photo of the patch on my scalp to show another doctor... only thing is i am having burning different parts of body but not always showing pink/red...also a rash top of chest and around neck that no one can see but i can feel with fingertips so hard to take photo... but yes good idea!
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1 ReactionI have had erythromelalgia for 3 years and have tried a dozen different medications. Recently tried acupuncture with no relief. Nights are the worst with me using cool water, trying to go to sleep only to have another flare. I have read a couple of medical studies and shared them with my PCP. We're trying Melixitine next. Has anyone had any success with this drug?
How do you use the magnesium citrate?
Recent probable diagnosis of Erythromilgia. EM. Have cold feet then hot tingly feet. Some mild red blotches on arms and red palms.
Hot weather bad.
Taking Pregabalin. Who has been successful with this or other meds.
Yes. Probable diagnosis based on symptoms. Erythromelalgia
Need helpful tips and successful meds.
Hi @cherman, Welcome to Connect. While we wait for other members to share suggestions I thought I would share the following information I found that might be helpful.
"The aim of these therapies is to reduce the negative effects of stress and pain—through practicing relaxation, reframing unhealthy emotions, and training the ..."
-- The Patient's Guide to Erythromelagia from The Erythromelalgia Association:
https://erythromelalgia.org/wp-content/uploads/2017/09/TEA-PatientGuideBook-1.pdf
The site also has a list of frequently asked questions that you and others might find helpful:
https://erythromelalgia.org/resources/faqs/.
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