Very helpful info, John.... not yet diagbozed, nurse practitioner had no idea what it might be or where to send me... so having to find info. myself to print and show her. Mine over 4 months on cheeks mainly thing is burning even when not red/dark pink at beginning so hard to explain to anyone the pain with no redness! One of the web sites you mention talk about the mental health side and also spouse/other becoming caregiver which has happened to me with other illnesses. Have most days but why not all,, which makes me wonder if food related or ? Once is began to make my face, nose etc 'reddish' i took selfies to show dr... have to wait til JAN to see dermatologist. Goes down neck and over shoulders but never feet... so have more research to do, thanks.
I thought I had erythromelalgia for 20 years, but it turned out to be Chilblains. They stopped the minute I was put on Nifedipine. I have peripheral neuropathy now from my chemo treatments. But, I've been doing better with the peripheral neuropathy once I got back on the magnesium I stopped taking because it gives me diarrhea.
I thought I had erythromelalgia for 20 years, but it turned out to be Chilblains. They stopped the minute I was put on Nifedipine. I have peripheral neuropathy now from my chemo treatments. But, I've been doing better with the peripheral neuropathy once I got back on the magnesium I stopped taking because it gives me diarrhea.
I was diagnosed 5 months ago. I have started on pentoxifylline 600mg 3x daily Nacetyllcysteine 600mg 2x daily,gabapen 600mg at hs, oxycodone for pain, and it helps my fibromyalgia also, voltaren gel cream 4 grams up to 4x daily.
To add to my recent comment. I have flaring I'm my feet, hands, ears and burning like hot lava and it feels like pens and needles or being cut with a sharp object.
I haven't been diagnosed with it yet, but the way my limbs and especially my feet burn, I'm pretty sure I do. Lyrica helps a little, I did read something about taking a combination of gabapentin, lyrica and naproxen actually are more effective for pain but have not tried it. I do use ice to calm my nerves, on the feet under the knee and on my hip on my bad burning side when it gets unbearable. Bonus it calms my tremors as well.
I seem to be at the end of a flare up in one hand. It lasted several months (winter and cold temps). When my body warmed up in bed at night my would become so itchy and hot I could not sleep. Hand was always swollen and often itchy even in the day with blistered skin on fingers. I have been on all suggested meds, including hydrochloroquine; nothing works Swelling is now down but I have cuts and sores between the knuckle and fingernail and raw cuticles. I have not read about this and wonder if is part of the symptoms.
I seem to be at the end of a flare up in one hand. It lasted several months (winter and cold temps). When my body warmed up in bed at night my would become so itchy and hot I could not sleep. Hand was always swollen and often itchy even in the day with blistered skin on fingers. I have been on all suggested meds, including hydrochloroquine; nothing works Swelling is now down but I have cuts and sores between the knuckle and fingernail and raw cuticles. I have not read about this and wonder if is part of the symptoms.
Yes it is usually winter, though sometimes it happens with summer air conditioning. Other than temperature I can’t identify triggers. When my back d’y gets warm I start to get red, hot and itchy. Can be during exercise, but especially bad about an hour after I fall asleep
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Very helpful info, John.... not yet diagbozed, nurse practitioner had no idea what it might be or where to send me... so having to find info. myself to print and show her. Mine over 4 months on cheeks mainly thing is burning even when not red/dark pink at beginning so hard to explain to anyone the pain with no redness! One of the web sites you mention talk about the mental health side and also spouse/other becoming caregiver which has happened to me with other illnesses. Have most days but why not all,, which makes me wonder if food related or ? Once is began to make my face, nose etc 'reddish' i took selfies to show dr... have to wait til JAN to see dermatologist. Goes down neck and over shoulders but never feet... so have more research to do, thanks.
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1 ReactionI thought I had erythromelalgia for 20 years, but it turned out to be Chilblains. They stopped the minute I was put on Nifedipine. I have peripheral neuropathy now from my chemo treatments. But, I've been doing better with the peripheral neuropathy once I got back on the magnesium I stopped taking because it gives me diarrhea.
What level og magnesium supplementation
I take one 2000mg magnesium l-threonate once a day. More gives me diarrhea.
I was diagnosed 5 months ago. I have started on pentoxifylline 600mg 3x daily Nacetyllcysteine 600mg 2x daily,gabapen 600mg at hs, oxycodone for pain, and it helps my fibromyalgia also, voltaren gel cream 4 grams up to 4x daily.
To add to my recent comment. I have flaring I'm my feet, hands, ears and burning like hot lava and it feels like pens and needles or being cut with a sharp object.
I haven't been diagnosed with it yet, but the way my limbs and especially my feet burn, I'm pretty sure I do. Lyrica helps a little, I did read something about taking a combination of gabapentin, lyrica and naproxen actually are more effective for pain but have not tried it. I do use ice to calm my nerves, on the feet under the knee and on my hip on my bad burning side when it gets unbearable. Bonus it calms my tremors as well.
I seem to be at the end of a flare up in one hand. It lasted several months (winter and cold temps). When my body warmed up in bed at night my would become so itchy and hot I could not sleep. Hand was always swollen and often itchy even in the day with blistered skin on fingers. I have been on all suggested meds, including hydrochloroquine; nothing works Swelling is now down but I have cuts and sores between the knuckle and fingernail and raw cuticles. I have not read about this and wonder if is part of the symptoms.
Welcome @linda19. Oh, your hand does look uncomfortable. I'm tagging fellow members @cherman @raebaby @ellen50 @jt67 @susanop @bcoimbra @lacy2 @emishell2022 @wiedd @drolker @susanop @txbren @hotfooted who also have experience with erythromelalgia and can share their tips for dealing with flares.
I'm encouraged to hear that the swelling has gone down. Are your flares often associated with winter and colder temperatures? What are your triggers?
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1 ReactionYes it is usually winter, though sometimes it happens with summer air conditioning. Other than temperature I can’t identify triggers. When my back d’y gets warm I start to get red, hot and itchy. Can be during exercise, but especially bad about an hour after I fall asleep