Anyone out there with Erythromelalgia?

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

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

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 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

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.

@mjohn Your erythromyalgia sounds like a real problem. And it sounds like the medicines weren’t working for you. Have you thought about getting a second opinion? You could research medical centers of excellence in your state or look up the Mayo Clinic’s Care Network. Link: HTTPS:// mayoclinic.org/about-mayo-clinic/care-network/members. You need a good diagnosis and proper care!
Is this something you would think about?

Mayo Clinic in Minn. has a dermatologist there who deals with erythromelalgia. Pain management is all they can really do for this. Creams, antidepressants, lyrica, etc. seem to be their go-to. No cures unless you can find out what exactly is causing the SFN which in turn goes into EM. I have been tested for all diabetes which does cause neuropathy. Negative there too. They can't find the cause, so there is no way to control whatever is causing it. Thank you for your post.

Yes, my neurologist seems to ignore it. He put me on PT for balance, but I only lose my balance when my ears have pressure, otherwise my balance is good.