Flare-up that won't stop

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.