Severe Erythromelalgia in lower legs and feet

Over 10 years trying every medicine including an intrathecal pump and nothing even touched the pain. I am researching amputation of my lower leg and how phantom pain would manifest itself. Has anyone had, or heard of anyone with Erythromelalgia get a limb amputated? Please help me find someone. My doctors are unwilling to amputate without any previous knowledge of how phantom pain would react.

i am afraid ive got no idea however i am wondering what erythromelalgia is? i do have severe pain its widespread and probably related to mitochondrial disease so pain i understand!

Hello Mike - I understand how much severe pain can be a bummer, but with your condition I have no knowledge [but i do suffer from severe pain]. With the thought of becoming an amputee take it into great consideration as i have just a few months ago had to have my left leg amputated due to a severe bone infection and i never in my wildest dream thought how bad a part of your body you don't have can cause so much pain, they call it phantom, the docs. told me they can last any where from 3 to 5 years. i wish there was an easier way to put it to you.

your friend bill

I’m sorry I haven’t been to this site for a while. There is another site in which I was directed - Living with EM and I forgot about this post.

What renders me basically useless are the muscle spasms that go through my toes, feet and lower legs. My feet all the while are swollen, black/purple and red with the constant burning EM pain. It’s the pain that originates in my feet from the spasms rather than in my brain that I’d like to eliminate. I’m prepared to have the phantom pain, and I’d replace the nasty lower leg with a brand spankin’ new magic leg. I figure my pain level would be about 40% less without the constant spasms.

The muscle spasms are a condition of Multiple Sclerosis (d. 1992). I’m also blessed with Raynaud’s, so there are times one foot is burning hot and the other is freezing cold - but the pain is the same.

I don’t mean to scare anyone with this discussion. This is real for me and I’m doing my diligence. I try real hard to enjoy each day. The pain began around 2000 and has gotten progressively worse. Medications of all kinds, a spinal cord stimulator, Intrathecal pump trial and enough mind bending sessions to know I’m trying my best. Nothing at all has ever touched the pain. I live a healthy lifestyle with a happy family. There isn’t defeat in my, just the need for some
relief. Mike

We have a brand new community just for EM.