Patient Comments: Rhabdomyolysis - Describe Your Experience

Please describe your experience with Rhabdomyolysis.

Comment from: Sten cell1, 35-44 Male (Patient) Published: May 21

I had rhabdomyolysis in my right leg. I was unconscious for 19 hours, when I awoke on my right side on concrete floor I had purple dots on my leg. I tried to walk but my leg kept collapsing. After being admitted to hospital and diagnosed with rhabdomyolysis they flushed the muscle, out of my blood stream. Years later the nerve damage and muscle weakness remains. I am looking into stem cell trials with great interest.

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Comment from: 45-54 Female (Patient) Published: March 14

I am a 47 year old female. I began to have muscle spasms in my left leg about 2 times per week, suddenly they stopped. I noticed my legs were always tired and it was hard for me to climb stairs, along with this I had swelling in my legs, ankles, feet and then my knees on a daily basis and it became a bit painful. I"ve been experiencing joint pains in my right elbow which limits my reach mobility. I was diagnosed with rhabdomyolysis in October 2013 and admitted to hospital, where my fluids were replenished. I continue to suffer from the swelling almost daily.

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Comment from: Overtrainer, 19-24 (Patient) Published: December 30

During school I get increasingly stressed. In order to feel better and cope I tend to workout harder than I should. This caused my rhabdomyolysis. It felt like a balloon filling up my inner chest. Since it was something that I have never experienced I thought it was just gas in my upper stomach/esophagus. It was a very scary experience simply because the pain was so close to my heart so I was worried something was wrong. They told me that I should just work out a normal amount and most importantly, provide time for recovery. It was surprising because I have no medications or alcoholism. One reason I could see it happening is I recently broke my leg and had surgery to repair it. I think the degradation of the leg muscle attributed to the increase of muscle fibers breaking down and not repairing.

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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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Rhabdomyolysis - Symptoms Question: What were the symptoms of your rhabdomyolysis?
Rhabdomyolysis - Diagnosis Question: What tests and exams did you have that led to a diagnosis of rhabdomyolysis?
Rhabdomyolysis - Treatment Question: What kinds of treatment did you receive for rhabdomyolysis?

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