Alpha LIPOIC ACID might help. Go on the Internet and look for 'Dr. Jay Cohen'. He was diagnosed with EM in 1995 when hardly any one heard of it. He did extensive research and tried many natural products. What works for one might not work for another. It is a matter of trying. I was diagnosed with EM in 2005 and been to Mayo's twice but unfortunately there is no cure. I also have raynauds and neuropathy.
In order to manage EM, I have been taking Alpha Lipoic Acid and still do. It was definitely helpful when I first started on it but then it seems to have lost its efficacy. The pharmaceutical path for EM and PN is the same to my lay knowledge - there are no separate Rx's for EM. My neuro muscular doc upped my dosage of Gabapentin to 2400 mg along with 30 mg of Duloxetine in the evening. This has helped me considerably in sleeping at night with lesser reliance on cold socks. I have PN and EM.
Alpha LIPOIC ACID might help. Go on the Internet and look for 'Dr. Jay Cohen'. He was diagnosed with EM in 1995 when hardly any one heard of it. He did extensive research and tried many natural products. What works for one might not work for another. It is a matter of trying. I was diagnosed with EM in 2005 and been to Mayo's twice but unfortunately there is no cure. I also have raynauds and neuropathy.
I also have Erythromelagia., so far , I have nothing that controls it. I agree with some of your recommendations such as warm not hot showers or baths, but don’t understand some of the other points you have made. How does being around electrical devices or internet cause a flare?
A pain management dr once said, “All pain is electrical.” The nervous system is electrical, and the human body has the ability to receive radiating energy in its many forms like an antenna. In my case of EM being secondary to peripheral neuropathy, the nerves (or wiring if you will) is damaged. Putting my body in a position to receive less radiating energy (including extreme heat and cold) means there is less stress on the damaged nerves. Less unnecessary nerve signaling caused by environmental factors has resulted in less pain. This is the reason for the other things I have said help me personally.
Hi Amanda, yes....I have been suffering now for about 6 years. EM and Reynauds. After many, many doctor and specialist visits they suspect that the EM may have been brought on by Lyme.
Hi Amanda, yes....I have been suffering now for about 6 years. EM and Reynauds. After many, many doctor and specialist visits they suspect that the EM may have been brought on by Lyme.
Hello @wiedd, Welcome to Connect. I know it has to be frustrating when you are trying to get answers after seeing many doctors and specialists. Since you mentioned you also have Reynaud's there is another discussion you might find helpful -- Raynaud's Syndrome: https://connect.mayoclinic.org/discussion/raynauds-syndrome/
Recently my rheumatologist prescribed a cream for my feet for treatment of Erythromelagia. The cream is made at a Compounding Pharmacy. It is not covered by any insurance. The cream contains Amytriptoline, Ketamine and Lidocaine.
I’ve used the cream about 6 weeks , it took a while but it is helping . At least the severe swelling has gone down and I can wear some coffee my shoes again.
Hello @wiedd, Welcome to Connect. I know it has to be frustrating when you are trying to get answers after seeing many doctors and specialists. Since you mentioned you also have Reynaud's there is another discussion you might find helpful -- Raynaud's Syndrome: https://connect.mayoclinic.org/discussion/raynauds-syndrome/
Thank you for the link to the site. In brief, I have not really found anything like a “silver bullet” that is effective. With both EM and Reynauds it is tough because treating one condition (overdilation) exacerbates the other (overconstriction). And I can’t use pain killers.
My “recovery” period seems to be overnight, so if I can get sleep then there is a bit of relief by the morning. This I can attain with the help of Medical Cannabis. I recognize thatthis is not an option for everyone, but does help my insomnia, which seems to be another Hallmark of this disease. I have also found that any supplementation that proclaims to help with blood circulation (even fish oils, magnesium etc) makes the flares worse.
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Alpha LIPOIC ACID might help. Go on the Internet and look for 'Dr. Jay Cohen'. He was diagnosed with EM in 1995 when hardly any one heard of it. He did extensive research and tried many natural products. What works for one might not work for another. It is a matter of trying. I was diagnosed with EM in 2005 and been to Mayo's twice but unfortunately there is no cure. I also have raynauds and neuropathy.
In order to manage EM, I have been taking Alpha Lipoic Acid and still do. It was definitely helpful when I first started on it but then it seems to have lost its efficacy. The pharmaceutical path for EM and PN is the same to my lay knowledge - there are no separate Rx's for EM. My neuro muscular doc upped my dosage of Gabapentin to 2400 mg along with 30 mg of Duloxetine in the evening. This has helped me considerably in sleeping at night with lesser reliance on cold socks. I have PN and EM.
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1 ReactionI have those sick too !! Really helps cool my feet down fast!
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1 ReactionI have Erythromelagia, neuropathy,Raynauds and Sjogrens., I’ll look up Dr Jay Cohen . Thanks.
A pain management dr once said, “All pain is electrical.” The nervous system is electrical, and the human body has the ability to receive radiating energy in its many forms like an antenna. In my case of EM being secondary to peripheral neuropathy, the nerves (or wiring if you will) is damaged. Putting my body in a position to receive less radiating energy (including extreme heat and cold) means there is less stress on the damaged nerves. Less unnecessary nerve signaling caused by environmental factors has resulted in less pain. This is the reason for the other things I have said help me personally.
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1 ReactionThat makes complete sense. I do avoid wearing tight clothing and using my neck ID lanyard at work. Thank you for sharing!
Hi Amanda, yes....I have been suffering now for about 6 years. EM and Reynauds. After many, many doctor and specialist visits they suspect that the EM may have been brought on by Lyme.
Hello @wiedd, Welcome to Connect. I know it has to be frustrating when you are trying to get answers after seeing many doctors and specialists. Since you mentioned you also have Reynaud's there is another discussion you might find helpful -- Raynaud's Syndrome: https://connect.mayoclinic.org/discussion/raynauds-syndrome/
Have you found any treatment that helps you?
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1 ReactionRecently my rheumatologist prescribed a cream for my feet for treatment of Erythromelagia. The cream is made at a Compounding Pharmacy. It is not covered by any insurance. The cream contains Amytriptoline, Ketamine and Lidocaine.
I’ve used the cream about 6 weeks , it took a while but it is helping . At least the severe swelling has gone down and I can wear some coffee my shoes again.
-
Like -
Helpful -
Hug
1 ReactionThank you for the link to the site. In brief, I have not really found anything like a “silver bullet” that is effective. With both EM and Reynauds it is tough because treating one condition (overdilation) exacerbates the other (overconstriction). And I can’t use pain killers.
My “recovery” period seems to be overnight, so if I can get sleep then there is a bit of relief by the morning. This I can attain with the help of Medical Cannabis. I recognize thatthis is not an option for everyone, but does help my insomnia, which seems to be another Hallmark of this disease. I have also found that any supplementation that proclaims to help with blood circulation (even fish oils, magnesium etc) makes the flares worse.
-
Like -
Helpful -
Hug
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