Karalee,

I have been going through the same thing for several years. I have lost half my weight in muscles along with the most unbelievable pain head to toe from 2009-2012. I don't believe it is untreatable and there are a lot of studies being done but mostly in Spain. The symptoms can be managed as well as the pain but it takes a heck of a lot of work. I have completely lost so much muscle you can feel the joints in my shoulders, hips and knees. I have accomplished some amazing things and have not been on any pain meds for a year now in addition to riding the bike over 1,500 mikes and walking over 500 miles in the past year. This was from being in a motorized wheelchair and on methadone.

It took about 6-7 hours a day doing various exercises for many weeks and then down to 2-3 hrs 3-4 times a week. I will be blunt, it takes a huge commitment and a lot of work plus repetitive blood tests and nutrition management.

I cannot guarantee your husband will get the same results but I'm willing to help in any way as the end result is death. I don't believe I have changed that prognosis but I think I have extended the inevitable.

Im willing to do anything possible to help but I want to know how much your husband wants help. What I was told only allowed things to escalate faster. I had almost a dozen doctors trying to help me but most of what they told me was later determined by me to be false and not aggressive enough.

Ed