Hi David,

I too have a metabolic myopathy and am extremely prone to rhabo. It s a tough thing to deal with. I get my care at The Mayo Clinic and as of this time there is no real medication that can help with pain. I ask all the time. Muscle relaxers work ok sometimes but not enough in my experience. Through trial and error and research I have learned some lifestyle changes that do seem to help.

First, avoid extreme cold and heat. The cold in particular is rough on us. I live in MN and haven't been outside for a week due to -35 temps. It sucks but the second I step into the cold my muscles seize and burn. And they don't stop for a while. Dress very warm if you have to go out but staying in helps me tremendously.

Second, take 500 mg of Riboflavin in the morning once a day. It is the #1 thing that makes me hurt less. It's a vitamin my Mayo doctor recommended. I noticed a huge improvement in my pain and a decrease in muscle fatigue and weakness. If I accidentally miss a dose I really feel it later. I am also on CoQ10 2x a day. 1000 mg each time.

Third, get in the sun. We are very prone to being severely vitamin D sufficent which can make cramping and pain worse. My doctors told me 20 mins in the sun a day with my arms outstretched and palms up is what to do. Don't wear sunscreen or sleeves. It is much more effective for us to get our Vitamin D from the sun. I asked about cancer and the doctor said I had bigger problems the rising skin cancer. It helps tremendously with pain. I take a vitamin because its so gray here. No sun. And it is not the same.

Finally, some massage can give temporary relief but not last very long. stay very hydrated because RHABDOMYOLYSIS is more likely to occur if your dehydrated. Also, make sure you're never "fasting." Meaning eat regularly at small intervals all day. Fasting is the #1 guarantee that rhabdo will "turn on" and cause pain.

Hope this helps!