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!
Try Nephedepine. My erythromelalgia turned out to be chilblains as I've mentioned before. It stopped with the first dose, but I'd been living with it for 20 years. It was horrible. One of the members in my support group with erythromelalgia committed suicide because it was so bad. I sympathize with you. Maybe the drug would help erythromelalgia.
Now I'm 81 and have survived breast cancer. I'm feeling good again and was tromping around on the 22 hilly, soggy acres I live on in California. All good things are possible! Two days ago my airline flight was able to get back home to Templeton, CA from Portland, OR. Everyone applauded when we landed after the pilot's second try through the windshear and we got high fives from the many people in the waiting room as we debarked!
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.
Amlodipine, nifedipine, and diltiazem have been utilized with isolated reports of remission. Use of high-dose oral magnesium has been reported in 12 patients recruited via an informal survey through The Erythromelalgia Association. Of these patients, 61.5% reported varying degrees of improvement.Aug 30, 2018
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.
Dr. Jay Cohen (now deceased) suffered from EM for many years and did lots of research. Put his name in your browser and you will have access to many of his articles. Also the EM society publishes many articles and have a worldwide membership. I was first diagnosed by Mayo's in 2006 and had some improvement but it came back with a vengeance about 2 years ago about the same time I developed neuropathy. I also have Raynauds. I can go to bed with ice-cold, blue/purple toes and wake up 1 hr. later with hot, red and burning toes/feet. Not sure if it is EM or neuropathy. I use Aspercream with Lidocaine and get some relief. I also take 500/1000mg of Aspirin at bedtime as well as 300 mg. Alpha Lipoic Acid of which I also take 300 mg. in the morning..
Hi everyone. I was diagnosed by my dermatologist back in 2016. I went to the vascular and erythromelalgia clinics at Minnesota Mayo in 2018. They ran 4 days of various tests on me and diagnosed w me Reynauds as well. I take gabapentin. I’ve tried Cymbalta, Lyrica, and others, with no luck. Gabapentin (high dose) gives me some relief to function. Like one of the others, my feet are purple, and then turn hot and red. This has moved to my hands, ears, and face as well. Mind blowing frustrating. Life is not the same as it used to be. I read everything I can get my hands on see if there is some breakthrough.
Should also note that my dr (and Mayo) prescribed topical cream w ketamine/lidocaine/amitriptiline(sp?). I use that on my feet in am/pm when flares are bad and rhofade on hands and face/ears, which somewhat keeps those flares in check.
All the best to you all.
Kelly
Hi everyone. I was diagnosed by my dermatologist back in 2016. I went to the vascular and erythromelalgia clinics at Minnesota Mayo in 2018. They ran 4 days of various tests on me and diagnosed w me Reynauds as well. I take gabapentin. I’ve tried Cymbalta, Lyrica, and others, with no luck. Gabapentin (high dose) gives me some relief to function. Like one of the others, my feet are purple, and then turn hot and red. This has moved to my hands, ears, and face as well. Mind blowing frustrating. Life is not the same as it used to be. I read everything I can get my hands on see if there is some breakthrough.
Should also note that my dr (and Mayo) prescribed topical cream w ketamine/lidocaine/amitriptiline(sp?). I use that on my feet in am/pm when flares are bad and rhofade on hands and face/ears, which somewhat keeps those flares in check.
All the best to you all.
Kelly
I have the same issues plus neuropathy. I found that 600 mg. stabilized Alpha Lipoic Acid gives me some relief. I also use Aspercream with Lidocaine on my feet most nights, plus 1000 mg of Aspirin and 100 mg Gabapentin, which I will try to eliminate since the higher does did not help.
I went to Mayo's in 2006 and had some relief for several years until the neuropathy kicked in which was worsened by the Covid vaccination
Does anyone have flares in the face or ears? Or hands?? I see some affected by their feet, which i have, but face,ears, and hands are more often for me.
I get strong burning in my face and a pressure in ears that makes me very unsteady. I have taken to walking with a cane. I also burning over my entire body, but my face and ears are the worst. I am on 1200 mg of Gabapentin.
Keep your house as cool as you can. Winter my heat is on 62 degrees F, summer, its on 68F for AC. And lower at night. Do not drink alcohol,especially wine.that is a trigger. Avoid direct sun. I use a ceiling fan and a tiowr fan for my feet and legs at night . I only have this problem on both feet. But I also have neuropathy at the same time. I have ice socks that I keep ready in the freezer. You get these on Amazon. Use them on your hands too. Really helps to cool my feet off. Finally, look into getting y0ur dr to prescribe the cream that I have, it is made in speciality pharmacy . It contains Lidocaine,Ketamine and Amytriptoline. It’s expensive, but it does help. Good luck.
I think I have it. Try to keep short: since last June, burning hot cheeks whether or not face flushed; sometimes goes down right side neck tops of shoulders. Similar to Rosacea but waited 5 months to see dermatologist who does not know, did say maybe a bit of Rosacea.... said could try Elidel ? cream but I have been putting small cold packs on face as medication-sensitive. Over the weeks/months it has become much more painful, more often, and for longer times. Today on and off and crying and pressure in head, sometimes burning ears with it etc. But am waiting 7 months to see Neurologist I have seen before as we have none where I live. Lagely I wake up through night with it. Tonight I realized I could use my rectangular home made pad filled with rice I put in microwave, or used to, and put in bag in freezer and have it wrapped around neck as it goes under chin. Honestly, with other things I contend with and 80 in six months I can hardly stand it any more. I will check about the Lidocaine mix ointment, thanks. When it started my face could be pale, as it usually was, or flushed and across nose etc., and I realize its hard to diagnose but I don't have a Dr. but a Nurse Practitioner. 2016 got P.N. of hands and ower arms and feet and lower legs after Quinolone drug for uti, but was manageable without meds... now this on my face and started to burn from knees down. Yes have fan in bedroom almost directed to me but freezing outside so although face etc. boiling, body cold esp. right hand and right foot. Still no diagnosis but seems to fit this as doesnt seem to be food allergy etc. J.
I think I have it. Try to keep short: since last June, burning hot cheeks whether or not face flushed; sometimes goes down right side neck tops of shoulders. Similar to Rosacea but waited 5 months to see dermatologist who does not know, did say maybe a bit of Rosacea.... said could try Elidel ? cream but I have been putting small cold packs on face as medication-sensitive. Over the weeks/months it has become much more painful, more often, and for longer times. Today on and off and crying and pressure in head, sometimes burning ears with it etc. But am waiting 7 months to see Neurologist I have seen before as we have none where I live. Lagely I wake up through night with it. Tonight I realized I could use my rectangular home made pad filled with rice I put in microwave, or used to, and put in bag in freezer and have it wrapped around neck as it goes under chin. Honestly, with other things I contend with and 80 in six months I can hardly stand it any more. I will check about the Lidocaine mix ointment, thanks. When it started my face could be pale, as it usually was, or flushed and across nose etc., and I realize its hard to diagnose but I don't have a Dr. but a Nurse Practitioner. 2016 got P.N. of hands and ower arms and feet and lower legs after Quinolone drug for uti, but was manageable without meds... now this on my face and started to burn from knees down. Yes have fan in bedroom almost directed to me but freezing outside so although face etc. boiling, body cold esp. right hand and right foot. Still no diagnosis but seems to fit this as doesnt seem to be food allergy etc. J.
Fall of 2017 I became very ill with fatigue and tingling in my toes. Blood tests revealed a high ANA, so autoimmune disease was suspected. All markers for autoimmune were negative, but the tingling in toes started to move to feet and then legs from knees down. In 2020 the red, hot burning feet appeared. I diagnosed myself that very day once looking online at pictures of others with the same condition. I showed my doctor pictures of my feet and asked if he thought I had erythromelalgia. He agreed and said nothing could be done except pain management. I do not like drugs but I tried lyrica. Nothing happened. It did not help at all, so I discontinued it.
I later came to the conclusion that this was small fiber neuropathy - again after doing my online searches. I went to a neurologist and told him of my suspicion. He agreed to do a skin biopsy before he could diagnose me with SFN. The biopsy was positive. He thought that maybe ivig could help me. I received monthly infusions for six months. No improvement, so I discontinued that as well. I relate to all who have this dreadful condition.
Like others, I keep the heat low in winter and use air conditioning in summer. I love the winter since I can then walk with my dog for our 2 1/2 mile walk each day (wearing sandals of course). I cannot wear closed shoes. My feet heat up way too fast for that. I dread spring and summer. I feel like a prisoner in my home. Since I have a dog, I have to get out there and push through early morning walks and early evening walks.
Depression sets in as I realize warm weather is coming. My happiest days are cold, windy winter days when I can walk for miles.
I know others go through even worse things in life. I try to be grateful I don't have a systemic disease. Erythromelalgia is not dangerous, but it is life changing.
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Try Nephedepine. My erythromelalgia turned out to be chilblains as I've mentioned before. It stopped with the first dose, but I'd been living with it for 20 years. It was horrible. One of the members in my support group with erythromelalgia committed suicide because it was so bad. I sympathize with you. Maybe the drug would help erythromelalgia.
Now I'm 81 and have survived breast cancer. I'm feeling good again and was tromping around on the 22 hilly, soggy acres I live on in California. All good things are possible! Two days ago my airline flight was able to get back home to Templeton, CA from Portland, OR. Everyone applauded when we landed after the pilot's second try through the windshear and we got high fives from the many people in the waiting room as we debarked!
Amlodipine, nifedipine, and diltiazem have been utilized with isolated reports of remission. Use of high-dose oral magnesium has been reported in 12 patients recruited via an informal survey through The Erythromelalgia Association. Of these patients, 61.5% reported varying degrees of improvement.Aug 30, 2018
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1 ReactionDr. Jay Cohen (now deceased) suffered from EM for many years and did lots of research. Put his name in your browser and you will have access to many of his articles. Also the EM society publishes many articles and have a worldwide membership. I was first diagnosed by Mayo's in 2006 and had some improvement but it came back with a vengeance about 2 years ago about the same time I developed neuropathy. I also have Raynauds. I can go to bed with ice-cold, blue/purple toes and wake up 1 hr. later with hot, red and burning toes/feet. Not sure if it is EM or neuropathy. I use Aspercream with Lidocaine and get some relief. I also take 500/1000mg of Aspirin at bedtime as well as 300 mg. Alpha Lipoic Acid of which I also take 300 mg. in the morning..
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2 ReactionsHi everyone. I was diagnosed by my dermatologist back in 2016. I went to the vascular and erythromelalgia clinics at Minnesota Mayo in 2018. They ran 4 days of various tests on me and diagnosed w me Reynauds as well. I take gabapentin. I’ve tried Cymbalta, Lyrica, and others, with no luck. Gabapentin (high dose) gives me some relief to function. Like one of the others, my feet are purple, and then turn hot and red. This has moved to my hands, ears, and face as well. Mind blowing frustrating. Life is not the same as it used to be. I read everything I can get my hands on see if there is some breakthrough.
Should also note that my dr (and Mayo) prescribed topical cream w ketamine/lidocaine/amitriptiline(sp?). I use that on my feet in am/pm when flares are bad and rhofade on hands and face/ears, which somewhat keeps those flares in check.
All the best to you all.
Kelly
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2 ReactionsI have the same issues plus neuropathy. I found that 600 mg. stabilized Alpha Lipoic Acid gives me some relief. I also use Aspercream with Lidocaine on my feet most nights, plus 1000 mg of Aspirin and 100 mg Gabapentin, which I will try to eliminate since the higher does did not help.
I went to Mayo's in 2006 and had some relief for several years until the neuropathy kicked in which was worsened by the Covid vaccination
I get strong burning in my face and a pressure in ears that makes me very unsteady. I have taken to walking with a cane. I also burning over my entire body, but my face and ears are the worst. I am on 1200 mg of Gabapentin.
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Helpful -
Hug
3 ReactionsKeep your house as cool as you can. Winter my heat is on 62 degrees F, summer, its on 68F for AC. And lower at night. Do not drink alcohol,especially wine.that is a trigger. Avoid direct sun. I use a ceiling fan and a tiowr fan for my feet and legs at night . I only have this problem on both feet. But I also have neuropathy at the same time. I have ice socks that I keep ready in the freezer. You get these on Amazon. Use them on your hands too. Really helps to cool my feet off. Finally, look into getting y0ur dr to prescribe the cream that I have, it is made in speciality pharmacy . It contains Lidocaine,Ketamine and Amytriptoline. It’s expensive, but it does help. Good luck.
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Like -
Helpful -
Hug
5 ReactionsI think I have it. Try to keep short: since last June, burning hot cheeks whether or not face flushed; sometimes goes down right side neck tops of shoulders. Similar to Rosacea but waited 5 months to see dermatologist who does not know, did say maybe a bit of Rosacea.... said could try Elidel ? cream but I have been putting small cold packs on face as medication-sensitive. Over the weeks/months it has become much more painful, more often, and for longer times. Today on and off and crying and pressure in head, sometimes burning ears with it etc. But am waiting 7 months to see Neurologist I have seen before as we have none where I live. Lagely I wake up through night with it. Tonight I realized I could use my rectangular home made pad filled with rice I put in microwave, or used to, and put in bag in freezer and have it wrapped around neck as it goes under chin. Honestly, with other things I contend with and 80 in six months I can hardly stand it any more. I will check about the Lidocaine mix ointment, thanks. When it started my face could be pale, as it usually was, or flushed and across nose etc., and I realize its hard to diagnose but I don't have a Dr. but a Nurse Practitioner. 2016 got P.N. of hands and ower arms and feet and lower legs after Quinolone drug for uti, but was manageable without meds... now this on my face and started to burn from knees down. Yes have fan in bedroom almost directed to me but freezing outside so although face etc. boiling, body cold esp. right hand and right foot. Still no diagnosis but seems to fit this as doesnt seem to be food allergy etc. J.
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4 ReactionsI have a machine that I put ice and water in and it pumps the cold water into a pad that I put on my face. It helps a lot
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3 ReactionsFall of 2017 I became very ill with fatigue and tingling in my toes. Blood tests revealed a high ANA, so autoimmune disease was suspected. All markers for autoimmune were negative, but the tingling in toes started to move to feet and then legs from knees down. In 2020 the red, hot burning feet appeared. I diagnosed myself that very day once looking online at pictures of others with the same condition. I showed my doctor pictures of my feet and asked if he thought I had erythromelalgia. He agreed and said nothing could be done except pain management. I do not like drugs but I tried lyrica. Nothing happened. It did not help at all, so I discontinued it.
I later came to the conclusion that this was small fiber neuropathy - again after doing my online searches. I went to a neurologist and told him of my suspicion. He agreed to do a skin biopsy before he could diagnose me with SFN. The biopsy was positive. He thought that maybe ivig could help me. I received monthly infusions for six months. No improvement, so I discontinued that as well. I relate to all who have this dreadful condition.
Like others, I keep the heat low in winter and use air conditioning in summer. I love the winter since I can then walk with my dog for our 2 1/2 mile walk each day (wearing sandals of course). I cannot wear closed shoes. My feet heat up way too fast for that. I dread spring and summer. I feel like a prisoner in my home. Since I have a dog, I have to get out there and push through early morning walks and early evening walks.
Depression sets in as I realize warm weather is coming. My happiest days are cold, windy winter days when I can walk for miles.
I know others go through even worse things in life. I try to be grateful I don't have a systemic disease. Erythromelalgia is not dangerous, but it is life changing.
-
Like -
Helpful -
Hug
6 Reactions