Cramp Fasciculation Syndrome and Exercise anyone?

brandygburke

Just wondering if anyone else out there has been diagnosed with Cramp Fasciculation Syndrome or Issacs on this site that has managed to find exercises that they can do? The exercise intolerance, stiffness and full blown hour long cramps make it very difficult for me to even walk some days - I know it's a long shot that anyone out there has this and is on these forums, but if you are, I'd love to buddy up and find some tips!

Brandy

kelhun1

I do not have CFS, but I have very similar symptoms. I have been diagnosed with Mitochondrial Myopathy. I have exercise intolerance, but unfortunately I do not realize I'm doing damage until it's too late. I get awful "pinging" in my glutes and hamstrings for hours, like someone is stabbing me with a little knife. If I overdo it, my creatine kinase levels soar and I'm out of commission for at least a week. It feels like I've run a marathon even if it's only an hour long yoga class. Basically, I can burn glucose but not fat...so my body gets the energy by breaking down my muscle. I'm being treated by a MDA clinic and my although there are no medications to treat my disease, I have found some supplements that help. I'm not sure if they would be appropriate for you, but if you're interested, I can send you a list and you could run them by your neurologist to see what they think.

Although I don't have the same syndrome, I feel your pain and frustration. It's hard finding anyone with my disorder either (that's what we get for being so "special"), but I would be happy to lend support if you need it and let you know what is (or isn't) working for me. Who knows, it may work for you too.

johnL1949

I have had CFS sence 1974 and their is no cure for it. Mine has worsen over the years. I have complete muscle contractions throughout my body at one time until the muscles will tear them selves. Luckly it does not happen to often. I was finly diagnosed in 2005 after 29 years. This dissorder can also be caused by serten toxins found in lawn and garden sprays, I got mine from Shell Oil Herder, which is not used anymore because of its toxicosis to mamals like people and it depends on the person. Some people have no problems with it but some do. so if you have CFS you need to stay away from all spray poisons and heavy metals, dont eat fish that come from lakes and salt water because the toxins are stored in there fat, expressly tuna fish. They even had my old silver murcury teeth fillings replased, because the murcury can leach from them. It will worsen your CFS.. I take three 300 MG Tabs, of Oxcarbazepine per day, It has realy helped. I also have deep muscle therapy twice a week because my muscles in my leggs and arms contract and become round and very painful. the therapy is quite painful but the results are worth it. I also use acupuncture which is done on the muscles that have contracted it helps release the muscles and controlls a lot of your pain. As to the person that your doctors are calling it mitochondrial myopathy, this is just a through out name when the doctor does not know what you have, this is what thay said I had from 1974 untel 2005 when I whent to Emery Unaversity in 2005.in Atlanta, Ga. They came up with an Pulse EMG. that can break down your nero pathway in minuts, before this the only way to dignose CFS was to keep running an EMG over and over again for over a hour. johnL1949. The clinic at Emery is also a MDA clinic. I was in on the trials there, what a brake it was for me. The droctors wrote a paper on it in 2007 I believe, Sence I was found to have CFS my local MDA clinic Droctor has found three more cases in northeast tennessee.

Nebraskaguy1959

Greetings. I was diagnosed last week at the mayo clinic with cramp fasciculatipn syndrome as well. I am startingbmyvsearch as well for the right exercises that I can do. I hate not being active. So if you find anything that works please pass it on