My symptoms really started to become more and more often and last longer and longer no matter what I tried. Today they are basically continuous. I can soak my feet in cold water and get some relief, but as soon as that come out the inflamation, burning and temperature elevation in my feet returns within a few minutes. Does anyone have continuous symptoms? Does anyone have suggustions on how to break this vicious cycle? Will I lose me feet if they stay this way due to hypoxia? Any help is desperately appreciated. Thanks, John Lavoie
Hello John I am very sorry to hear of your struggles. Unfortunately I too have continuous EM but also Raynaud’s overlap. So I am trying to battle both at the same time. I have tried numerous prescribed medication but nothing helps me. I do use vicks on my feet or similar cooling foot creams. But it only gives me very temporary results. Please keep well. You are not alone.
Thanks for your reply. I was wondering, do you use a cold water bath at all. Also wondered how you get any sleep. Finally, what has been the long term inpact on your feet Thanks again, John
I’m very sorry for your pain. The first few years for me were bad, including a trip to Mayo that was not fruitful. But I found a doctor about 250 miles from me who works with me. After a few misfires, we settled on Pregabalin and Amitriptyline. But there is a trade off with the side effects - shaking and poor cognition. So I am now looking at reducing (not ending) my drugs and will experiment with Spinal Cord Stimulation. I am now working with Pain Management.
I do have Reynauds but no pain with it.
My message is don’t give up, don’t be afraid to try new things and/or combinations of things. Good luck and hang in there.
I also have continuous EM pain and burning. Are you seeing a doctor? After trying various meds a combination of tylenol, ibuprofen and lyrica helps. I also use prescription lidocaine topically and take oxycodone for intense flair ups. I’ve never heard of someone losing their feet.
Hi John,
I’m sorry, this is such a miserable disease.
I have occasional flares that go non-stop but only for 3-4 days and then I return to intermittent flares (always worse at night). And in between I have Raynaud’s. I’ve tried to stop using cold water, I think the swings between very hot and very cold are damaging and the water increases susceptibility to skin breakdown and ulceration. I do use a fan at the foot of my bed (on low) for severe night flares. Have you tried the OTC antihistamine, Cetirizine (brand name Zyrtec?) I think I’ve tried everything out there, prescription meds, topical OTC and compounded creams and the Zyrtec is the only med that seems to have a consistent impact in terms of lessening severity and frequency. I wish you some relief and a solid night’s sleep!
Jo
I have had EM for 24 years now. It gradually kept getting worse & worse until I was burning 24/7. About 8 yrs ago I was reading on this site about how this antidepressant drug was helping some people. I tried it and it has helped me by at least 50%. It’s called Effexor XR. You have to start off at a low dose & then keep upping the dose until you get relief or until the doctor knows it’s not going to work for you. I am taking 225 mgs. While in my home I have no burning at all. And if it doesn’t work for you it is hard to get off of it but it can be done. You have to wean off very slowly. I will never go off of it because it has basically changed my life for the better. I wish you well.
I keep my house at 72°. I also use a fan. I’ve had EM for about 30+ years, asking doctors everywhere. What the heck is wrong with my feet. They put me on gabapentin which caused me to shake and didn’t help. Lo and behold, My friend took me to this little shack on the side of the road called Mrs. Mango and company. I walked in and said I have Erythromialgia
. Instead of them saying what in the world is that, these two people that ran this herb shop knew exactly what I had. They said here try these two products. They pack their own pills with fresh herbs and can mail them out. I have been taking them for 3 months now.
I also use these jelly/wiggly black boot type socks bought from Amazon that you cool in the refrigerator freezer. I wear them for about eight minutes and take them off. You don’t want to freeze/cause nerve damage/frostbite. A cool fan directed at my feet really helps. But the pills that I got from this herb place are amazing. I go to a neurologist and always take pictures and my last visit was for him to say he didn’t need to see me anymore because my feet looked great due to the herbs. They went from red to healthy pink feet. I rarely wear closed toe shoes because the heat can cause them to get red again. Living in Florida is another problem With hot weather.
Above is the internet address to the herb company Near Cocoa, Florida. They are so helpful. They love getting emails or you can call them. The price per bag was around $15 for 50 pills. I take two sometimes a day and if I feel a flareup coming on, I take another and the heat is gone. They help so much. I also take 4 Pycnoginal
pills which is Pinebark from French pine trees. They help to rejuvenate cells and I won’t stop taking those and have no side effects on any of these pills.
The picture shows the neuropathy blend as well as the Frankensence, ginger, turmeric blend I get from Mrsmangosndcompany.
Maybe this will help.
Pati
Has anyone develped necrosis secondary to their EM? The plantar side of my toes have purple / black spots that are speading. It looks like necrosis by photos that I found on the web!
Thanks for any information that you may provide.
John
Yes, My EM is continuous. I have had constant burning, never ceasing, for 5 years now. I can never wear footwear, cannot work, cannot sleep through the night, and cannot be out of the flow of a strong fan for more than a few minutes. I cannot rest my feet on carpeting, and cannot have my feet covered by even a sheet during the night. I have fans in every room, including facing me when I’m in the shower (sitting, of course), and portable ones in the car. There’s concurrent Raynauds as well.
Mexiletine, gabapentin and venlafaxine help keep some sort of equilibrium, keeping tissue damage to a minimum.
Brief paddling in water in the bath is essential several times per day, but mostly a few seconds is all that’s needed. The drying effect of the medications is quite significant. The dry skin also gets very thick, and I need to use sheets of 80-grit sandpaper every few days to keep it normal.
At night, I use both a moisturiser and aloe vera. The moisturiser keeps the cracking reduced, but it also retains heat if applied too thickly. Moisturiser where needed, and aloe vera over all the toes, to keep a cooling effect. Most nights, I have a few iterations of this procedure before getting to sleep - which include a rinse in the bath to wash off earlier layers.
Sugar and carbs - any carbs - make things worse. But it also seems that any food - as if, any nutrients in the bloodstream - are problematic. I notice that foods that are bad for gout, are bad for EM. (before diagnosis, I thought I was developing gout).
