Patient Comments: Rhabdomyolysis - Describe Your Experience

Please describe your experience with Rhabdomyolysis.

Comment from: Noni, 55-64 Female (Patient) Published: December 17

I was a 49 year old woman who was exercising regularly. I was on Zocor 20mg for 4 months. Blood work done 2 weeks prior to being diagnosed with rhabdomyolysis came back normal. I became very ill 2 weeks after the lab work and was hospitalized for 6 1/2 weeks and was on dialysis for several months and daily for over a month. My CPK (creatine phosphokinase) level was sent to a special lab for an accurate value and the lab stopped the test when it hit one million. I had speech, physical and occupational therapy for months and then off and on for several years. I am 60 years old and still suffer with muscle weakness and pain. Swimming is the best exercise. Cold is my enemy. I lost muscle mass that did not grow back and I fatigue easy.

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Comment from: gturrentine88, 25-34 (Patient) Published: December 16

I was about 14 when I was diagnosed with rhabdomyolysis. I noticed I had significantly dark urine and immediately notified my parents. From there I went to the children's hospital and they told me I had the flu and sent me home. It wasn't until the next day when I got worse that they finally admitted me and after vigorous tests, it was confirmed I had it. My story is unique because only my maternal grandmother and great uncle have it (my uncle is deceased) and there is still no underlying factor discovered that tells me what triggers it. My CPK (creatine phosphokinase) has been as high as 200k! Doctors are flabbergasted and I still have many unanswered questions. I'm getting my daughters tested just to make sure they aren't carriers.

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Comment from: crybaby123, 45-54 Female (Patient) Published: September 16

I got mugged and was left on my living room floor for about 15 hours before I was found. I was in the same position and this (rhabdomyolysis) was my diagnosis. I do not have high cholesterol and do not take any of the medicines mentioned. I was only told of this diagnosis in an "oh by the way" type of thing upon discharge from the hospital. It has only been about five days. They did not give me any kind of medicine for this. My urine was always a normal color. Now, the left side of my body from my head to my waist is numb. The more I read, the more scared I get. I am already not very mobile due to a previous injury. I'm reading and reading, but have no idea what my prognosis is. The people in the hospital didn't seem to think it was so horrible, but I was pretty badly beaten and they actually at first thought I'd had a stroke, but now I'm really scared. I was in the process of searching for a new doctor and I don't really have one now. I have insurance and all, but not a regular physician. I'm kind of afraid to go to sleep now. While the thought of kidney failure really is horrible, the mere idea of ALS seems way worse and this is now my real fear. I keep reading and am not sure if rhabdomyolysis is related to it, or the statins that people take. I know I should be concerned about kidney failure, but transplants happen and ALS is a horrible death. Maybe I'm paranoid. I don't know.

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Comment from: Cheryl, 45-54 Female (Patient) Published: May 30

I am a 50 year old female with polycystic kidney disease, have hypothyroidism, and rheumatoid arthritis (RA). I increased my walking regime to nearly 4 miles a day on hilly terrain. After two weeks, I felt uncoordinated, couldn"t walk in time to my music, felt weak, and couldn"t use my arms as I had been. Also couldn"t sleep and had heavy, irregular heart beat and heaviness in chest. Primary doctor said it was too much thyroid medication without doing any sort of physical exam. I went to walk in clinic, was sent to the emergency room where myoglobin and CK were detected in blood work, indicating rhabdomyolysis. I will go for blood work one week later. I stopped Plaquenil and Lipitor. I still feel weak, and very thirsty.

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Comment from: pja, 65-74 Female (Caregiver) Published: March 04

My husband had been taking 20 to 40 mg of Lipitor for several years. I had noticed from time to time that he seemed dazed. One day he was driving and drifted off and ran into the curb and almost had a bad accident. Since he is diabetic, I thought his insulin level was low. Then about two months later, he had a bad seizure which put him in the hospital for three weeks. His muscle enzymes were 138,000 and he was diagnosed with rhabdomyolysis. When we returned from out of town, I took him to his personal physician who swore it was not caused by the statin. And after 2 months, he put him back on another statin - in one week he had another seizure and was removed from taking statins forever. As his wife, I am still very angry. This was several years ago. His cholesterol is now 320 and a new doctor put him on Zetia. We have been watching him closely and after two weeks, he seems ok.

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Rhabdomyolysis - Symptoms Question: What were the symptoms of your rhabdomyolysis?
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