“This sounds so ridiculous, but I can’t even step up on a curb. My legs won’t bend. I can move, but I can’t bend. If I do, I’ll get stuck in that position.

“I can be in serious trouble in 20 minutes. It’s very fast. The trick is don’t move. Just stop moving.

“I could be anywhere. And I know how important it is to get somewhere where I can stop moving and get something to eat. This last episode I was out shopping longer than I should have been--and I had my period and la de da de da. Before I knew it I was in trouble.

“Every time I’ve had muscle breakdown, it’s either been precipitated by the onset of menses or happened during. But there are so many factors. It could be that I’ve been too busy and didn’t sleep well the night before. Or maybe I went to bed too late or got cold.

“I don’t run to the doctor right away. Sometimes if I catch it early and eat something or rest for a couple of hours, I’m okay. When I can’t get back to a normal metabolic state by myself, I go to a family practice clinic five minutes from my house. My doctor there is just great. They give me one or two amps of intravenous D50—which is big, heavy sugar—and liters of D5W. Usually I get sick to my stomach when the CK (creatine kinase) elevates, and they’ll give me something for the nausea. Or if I’m in a lot of pain, they’ll give me pain medication. While I’m waiting, they taxi-cab my blood to the hospital and order a CK stat.

“You can’t judge your CK level by your level of discomfort. I’ve had CKs that were very mild when I’ve been in excruciating pain and I’ve had them higher when I didn’t even take pain medication. Mild for me is under 1,000. Actually, anything under 3,000 we can treat in the clinic and in a few hours I’m okay. When it gets higher than that I’m so weak afterward that I really need help. I can’t even take a shower by myself. In August my CK went to 4,000 and I ended up getting admitted. It’s not a dangerous range. The danger is that it can escalate.

“Once I had a bad virus and didn’t eat for five days. I remember lying on the bed and not being able to lift my pinky finger. That’s how heavy my whole body felt. They called that episode viral myositis. I was 35 and my CK was 36,000.

“The second major episode I was snow-shoeing in Colorado at high altitudes and hadn’t eaten much. I was two miles from nowhere with some acquaintances when my legs started cramping up. One of the girls said, ”You’re only walking! What’s your problem?” So I kept pushing myself and ended up collapsing on the ground. In the hospital they acted like I’d just pulled a muscle until they saw the tea-colored urine. Boy, did things change after that! Sure enough, my CK was 43,000.

“When I got home my doctor sent me to the Mayo Clinic. They took a sample of my skin and were able to figure out that it was CPT II deficiency from the fibroblasts.

“I’m not working now. Matter of fact, I had to give up my career. That was very difficult. I was a speech pathologist for 20 years. It’s been six months and I’m still adjusting. Actually, I have an incredibly supportive family, so they love the fact that I’m home. The people I’m close to help me more than I help myself. They plan their day around what I need.

“I try to do the things I like but I don’t do them for as long. My biggest problem now is that I’m anticipating my attacks. It’s hard not to. I get into trouble when I travel and go places and do too much and that makes me nervous.

When exercise goes awry: Exertional rhabdomyolysis
Excellent full-length article by Rod Hamer, M.D.

Pathogenesis and management of rhabdomyolysis
Thorough, well-organized site that includes causes, signs, symptoms, laboratory findings, complications, and treatments.