Dean,

I,m sorry you are hurting. Yes, we MCs do understand. I would like to encourage you to get your Vitamin D level drawn or just simply start taking Vitamin D. This has helped me with fatigue and pain. Take your weight and times it by 25 and start with that. Several people in their 70's have started taking it and has reported to me that they have more energy. There are numerous articles on the internet about it.

My pain has been in every part of my body. It likes to attack - squeeze an area for months then move to another area (this is when I am at rest) A memory form mattress has helped alot. Heating blanket and heating mattress is good. I have recently experienced less pain by taking Lycria. Remember, we have been told ( I have been told by the Mayo Clinic and my neurologist) that our pain is secondary to MC. So start looking at other options. I believe our pain is triggered by MC and we need to look into medicines and treatment for Mylgias (muscle pain) Fibromyalgia and more. Lycria is calcium channel blocker and it is helping. Dilantin is a sodium channel blocker that helps stiffness and some of my pain. Magnesium helps stiffness. Going to a heated pool helps. Some of us have Myofasical pain. Physical therapists have a special massage for this. Usually, you will have a knot and your skin will immediately turn red when rubbed against.

I just had an entire cardiac workup because of Left sided chest pains. One episode of intense pain lasted 5 minutes (Usually pain comes and goes within 15 seconds but last for hours). No heart problem was detected. I was told this had to be due to my MC. Possible chest wall being attacked,-- maybe.

The Muscular Dystrophy Association states MC does not progress. The National Institue of Neurological Disorders and Stroke states that MC can be a static or a progressive disorder.

We KNOW our own bodies and what is happening. It made my neuorologist mad when I saw a Physiatist but it was the Physiatist that recommended Lycria.

sorry so long

Judy,

I wonder if we have a tendency to be low in Vitamin D with MC or if it's just a coincidence. I had my levels checked for the first time a few months ago and they were very low even though I have great bones and no signs of any osteopenia or osteoporosis.

Then my mom's doctor checked her and the D levels were also very low so they're giving her therapy to help. She also has good bones.

I don't do too well with the D supplements but I am getting more sunlight this year to try to help. The kind of kidney cancer I have is related to low vitamin D levels and since I've been getting 15 minutes of sun a day the tumor hasn't grown and in fact they think it is smaller.

The trick for me is not getting too much sun because of a genetic disorder called porphyria. Any more than 15 or 20 minutes starts causing reactions for me. My friends with lupus also have to be very careful, but I think they're finding that avoiding the sun altogether also has serious consequences. We have to find our own tolerance levels.

I'm glad you're doing better. I think the constant pull of our muscles on our bones keeps them strong and probably calcium is given priority to go to the skeleton for that reason. But that may take away from the calcium needed for our muscles and nerves and cause more pain as a result.

One of my daughers says that Effexor really helps with both her fibromyalgia pain and the myotonia. I wonder if it works like Lyrica?

Jan

PS - I also wholeheartedly endorse heated mattress pads for MC! There's an online store at www.comforthouse.com that often has them on sale. They convert to DC current with a transformer so you don't have to worry about electromagnetic fields.