Rhabdomyolysis

Question:

Please describe your experience with Rhabdomyolysis. Submit Your Comment

Comment from: Rachel, 19-24 Female (Patient) Published: November 10

Due to my own stupidity (drinking a lot of alcohol) I woke up with the worst pain I’ve ever felt in my life. Every time I moved my legs it was excruciating and one leg was completely numb because of the rhabdomyolysis. I went to the hospital got no medication or checkup when I left the hospital. To this day I have no answers for the slight muscle pain/cramps I still get in my leg. I even had to leave my job because of the pain I had at that time and sadly no explanation to give them, since all my “bloodwork was fine now.”

Comment from: Barbara , 65-74 Female (Patient) Published: November 05

My experience over the years with rhabdomyolysis led to the discovery after genetic testing that I suffer from VLCAD. It has only taken 40 years! I am 67 years of age now and female. I have some sort of myopathy from it now and it is painful on a daily basis. Something worth getting tested for if you suffer from rhabdomyolysis often.

Comment from: Jodi, 25-34 Female (Patient) Published: September 29

My whole left leg and hip was swollen when I was at the hospital with rhabdomyolysis. I urinated dark urine for two days and was put on IVs. My urine cleared up but I think the fluids made the swelling go to my pelvis and abdomen. I asked the doctor to take me off fluids after 5 days and the swelling has slowly been going down but I’m very swollen still. I was in the hospital for one week. My creatine kinase (CK) levels were 129,000 then I think 8,000 when they let me leave. I was on morphine every 4 hours in the hospital, been out 1 day.

Comment from: littlebit2402, 19-24 Female (Patient) Published: July 29

I was diagnosed with rhabdomyolysis about a year ago. I've always been an athletic person. Right before my senior year of college I decided to try a Lyra class which was a lot harder than I expected. The next day I decided to go to the gym for the first time in weeks and assumed I could start at the same weight I use to lift. I always have soreness after a workout but the pain was so bad I collapsed getting out bed and couldn’t straighten my arm. I went to the emergency room and was admitted.

Comment from: Geechie , 25-34 Male (Patient) Published: April 27

By far the worst pain I’ve ever encountered. After a chest workout after being out the gym for a year, I ended up in the hospital for 2 weeks with rhabdomyolysis. This happened during May of 2019 and I still experience chest muscle aches every so often, such as today. Am I the only one! I haven’t been in the gym ever since and my chest muscles are so weak that it hurts to do 3 push-ups. That’s devastating to an army veteran and someone that was benching 300 lb.

Comment from: Holly D, 19-24 Female (Patient) Published: January 28

I hurt my legs back in August of 2019. After leg day workout, being stiff, weak and jelly-legged during my session, the next day I turned the wrong way and felt a tear and burn up my thigh. After a few days of thinking it was DOMS (delayed onset muscle soreness) I went to Accident and Emergency and was kept in for 5 days being diagnosed with rhabdomyolysis. My CK level was at 50,000. I have had so many pains since, feeling like I have a lump in the throat, stomach issues, and pain in my arm and leg. Nothing helps with the pain and I don’t know what is wrong.

Comment from: Margo, 55-64 Female (Patient) Published: December 10

I had rhabdomyolysis 2 years ago last June. I still haven't fully recovered. I have done research but still need help. Every now and then my right leg will spasm and cramp trying to make joints in the middle of my bone. It hurts worse than labor. My rhabdomyolysis was caused by statins.

Comment from: Luis c, 25-34 Male (Patient) Published: November 05

I was diagnosed with rhabdomyolysis and compartment syndrome. I was hospitalized almost two weeks and had surgeries on my calf area. Three months have since passed and I cannot move my foot. I can tip the foot very little down and very little up. I walk with crutches and when I do put weight on the affected leg the ankle and foot area swell. I can't feel my foot or move my toes. I don't know what to do. I'm afraid my foot won't function anymore.

Comment from: Desperate, 45-54 (Patient) Published: September 20

I'm suffering from rhabdomyolysis. Right now I can’t move much, my arms and legs. I cry every night. I want to get better, but my doctors don’t have any answers for me. I've been searching the internet for answers. No luck. I'm lost! They say my kidneys are fine, but I don’t know why my muscles are so weak.

Comment from: Chase, 19-24 Male (Patient) Published: September 19

Senior year of college I was super into weight lifting and taking the “normal supplements.” One day I focused my leg day routine with an emphasis on my calves... bad idea. Two days later I had rhabdomyolysis; literally had the hardest time walking yet alone standing on them. I went to the emergency room and my CPK (creatine phosphokinase) level was just over 56K. I got hooked up with the IV and 4 days later I was released. Long story short be very careful when taking supplements! Doctors said the supplement I was taking, Creatine, played a major role.

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Comment from: Jlblair1442, 19-24 (Caregiver) Published: August 21

Three of my 4 kids have mitochondrial myopathy. They get rhabdomyolysis several times a year and their CPK (creatine phosphokinase) levels go unreadable (normal is over 3000), much higher than most people and they have to be hospitalized until they can get their levels down or their kidneys will shut down! The last time my daughter had an episode that caused heart complications too. The first time was when my daughter was 20 months old and had a 'stroke-like' episode and she went in the hospital. I went to stand her up, she was limp and fell to the floor, couldn't even hold her head up anymore and lost all muscle control. She was in therapy for years.

Comment from: StuckWingingIt, 19-24 Female (Patient) Published: August 13

Ten years ago, after a month long meth binge and a night out drinking and dancing I noticed tightening of my muscles and unquenchable thirst. Assuming it was a panic attack I lay down trying to talk myself down but after a few minutes I felt muscle tearing across my chest, then along my ribs, and lower back. Every part of my body swelled and I couldn't urinate at the emergency room. I was diagnosed with rhabdomyolysis with renal failure. I had 24 hours of IV, then released, and no follow up (no insurance). I still have pain and muscle weakness today.

Comment from: B, 25-34 Female (Patient) Published: June 11

I did the CrossFit Murphy on Memorial Day and was sore, but also became physically ill with my arms swelling to 3 times their normal size 72 hours later. I went to an urgent care and was diagnosed with rhabdomyolysis. The general physician (GP) there told me to go home, put compression sleeves on my arms, and see my GP if I still felt bad after three days. I Googled rhabdomyolysis and went straight to the emergency room, where my CK levels were 66k and I was admitted for 6 days. They told me I'd have been dead if I had listened to the GP at urgent care.

Comment from: Jacqueline , 35-44 Female (Patient) Published: May 14

I did a Murph workout last week, this consisted of a 1 mile run, 100 pull-ups, 200 push-ups, 300 squats and another 1 mile run. I then did an extreme fitness class the next day. After feeling dehydrated for 3 days and suffering from severe pain and swelling in my arms I began to feel very unwell. On the third day my urine was the color of cola. I went to the emergency room and found it was rhabdomyolysis. My creatinine levels were 75000. I was put on an IV for 2 days. I wonder what the recovery time is and when I can go back to gym.

Comment from: Luna, 55-64 Female (Patient) Published: January 29

I have an autoimmune disease called dermatomyositis. During a flare my illness will attack my muscles, skin and nerves causing rhabdomyolysis. My CPK test result is around 26,000 and sedimentation rate goes up. My main concern is to stop my flare with high steroids or IVIG treatment and at the same time treat the rhabdomyolysis. Sadly I understand that the dermatomyositis flares and rhabdomyolysis come together. So my goal is to control my dermatomyositis.

Comment from: Jon graber, 35-44 Male (Patient) Published: October 25

I went to the emergency room for accidentally swallowing a wooden toothpick. Long story but they decided to scope my upper gastrointestinal tract and put me under with succinylcholine. I woke up with bad pain in calves, they ran blood tests, and found my creatinine, creatine kinase, etc., were all elevated. I was diagnosed with rhabdomyolysis. I spent 5 days in hospital connected to IV bags, and was released with all kidney functions back to normal. Forty three days later, I’m still not normal. List of issues too long to type out. How long will it take to recover!

Comment from: #1 Grandpa , 75 or over Male (Caregiver) Published: May 03

My grandpa had an accident 3 months ago, fell on the floor and was down for 3 days before he was found. He had cervical surgery to relieve a bulging disc in his neck. He was diagnosed with rhabdomyolysis, and he hasn’t been able to use his hands or arms at all in 3 months. He is doing some therapy without much progress. He has no pain at all, some movement in fingers but that’s about it.

Comment from: Anon., 65-74 Female (Patient) Published: August 29

For years I have been on, off or switching statins because of muscle pain. Most recently, I was prescribed pravastatin 10 mg which was eventually increased to 40 mg for my familial hypercholesterolemia. It's an older drug and took a while to cause the same old problems. This May, I had such severe muscle pain in my hamstrings and thighs that I asked my primary care physician for a CK (creatine kinase) test and stopped the statins. My CK levels were only 700s so I can't imagine what other people's pain would be like, because mine was debilitating. I was diagnosed with rhabdomyolysis immediately but the findings were inconclusive as I did not have kidney issues. I still cannot sit on a wooden or metal chair without a pillow. I am only without pain when I stand up. I continue to drink 15 glasses of water daily because the pain increases when I don't. The fatigue is terrible requiring naps. I am in physical therapy but because I have mobility, the therapist told me to go to a gym and get pain management and that there was little she could do. I am disgusted with her but will continue therapy as prescribed because the muscle atrophy is unacceptable for my age level. Be careful with statins and weigh your health options. The cardiologist is giving me 6 months to heal but in November I will need to try an injectable statin as the cholesterol levels are dangerously high.

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Comment from: DenaDonna, 55-64 Female (Patient) Published: July 13

In a freak accident, my legs were run over by a minivan. Right calf and left thigh were mostly involved. Paramedics, emergency room crew and even the follow-up with the orthopedist kept referring to my being 'hit by a car.' I continually corrected them, stating that the tire rolled over both of my legs. No one ever examined my calf and thigh; no one suggested blood work; and only nearly 2 weeks later when I wanted my own family physician to examine me (I had no confidence in the orthopedist I was referred to) was crush syndrome (or traumatic rhabdomyolysis) ever mentioned. I was still extremely swollen, in extreme pain, and he freaked out and ordered a sonogram from the vascular department, and an MRI. No blood clots were discovered, and nothing further was done. I now (nearly 7 months later,) have permanent swelling of the calf, permanent bruising and surface numbness (although there is pain if pressure is put on the muscle itself). I can't help but feel like more could have been done so that I wouldn't now have this disfigured leg. I work in a professional office and feel self-conscious when wearing skirts where my lower leg is exposed.

Comment from: lucinda, 45-54 Female (Patient) Published: May 23

I was just discharged from the hospital from the diagnosis of rhabdomyolysis. I had extreme diarrhea and was very confused (my doctor called it delusional). I could not get out of the bathtub for hours and sustained a number of injuries trying. When I did get out, the diarrhea was worse and my confusion came and went. I was given massive fluids in the hospital, I had blood in my urine and stool, and was very weak. The confusion resolved, my friends and doctor said I was beginning to look normal. I had had kidney issues when I was born and terrified of dialysis but there was no talk of that. I was given double full IV fluids in 2 IVs for 4 days, monitored for cardiac issues and taken off blood pressure medicines. I follow up with my doctor tomorrow. My thighs hurt like crazy and getting up and down is very hard. On the last two days in the hospital I was started on physical therapy and assessed for a walker, cane, bedside commode, etc. I am drinking water and sugar free power drinks (32 ounce) hourly. I have no appetite and still do not urinate but a couple of times a day.

Comment from: Plain jane, 55-64 Female (Patient) Published: July 17

I am 64 and after 30 years of office work with sporadic field work, I decided to take up Tai Chi. After the second class, I went to bed that night feeling achy, like I might have the flu. As the night progressed I began losing muscle control and needed to use my arms to move my legs. By morning I was unable to move anything but my right arm. At the hospital my CPK (creatine phosphokinase) level was 69000. After weeks in the hospital for rhabdomyolysis I came home and started recovery. Five months later, I am still having shortness of breath and unable to walk like I used to. I had heart tests because of symptoms and heart is clear. Lungs have just been tested but no solutions for shortness of breath, weakness and inability to walk very far without stopping and resting. Fatigue is daily routine now. None of the doctors have a clue how to help with symptoms. Beginning to think this will be permanent way of life now. CPK levels are still fluctuating but near normal range.

Comment from: Mom, 25-34 Male (Caregiver) Published: April 02

My son is 27 and in great general health. His job is working on computers, so he has to make himself exercise. He tries to walk to work (about half a mile) and jogs about 10 to 15 miles a week. In the summer, he spends all his free time wake-boarding, which is fairly rigorous. With summer coming, he decided to try and get in better shape, so he bought an extreme home fitness program. He did this for three days and followed the high protein diet that went along with the program. He was extremely sore after the 1st day which he expected, but after the 3rd day he was feeling very ill and sore. He urinated brown just once, and it was painful to drink water or eat. By the sixth day, he wasn’t getting better so he went to the doctor. Long story short, he was diagnosed with rhabdomyolysis and was in the hospital for eight days on IVs trying to flush his kidneys. That helped with some of the problems but not with the filtering. He was finally put on dialysis, which helped. Our prayers are that dialysis is short-term, and soon this will be a bad nightmare.

Comment from: Mitch S, 25-34 Male (Patient) Published: February 10

I had the exact same reaction to succinylcholine as another commenter here. I am 45 days out from hospitalization for rhabdomyolysis, all blood work is normal and I am not even close to normal. I can’t get any answers about recovery time.

Comment from: Ella, 55-64 Female (Patient) Published: September 22

I was airlifted to a hospital with suspected stomach bleed. Because the NHS (National Health Service) do not recognize 'tender' as a description of pain they neglected me for some hours at the end of which they realized I was too ill to be moved for x-ray so x-ray came to me. Then they put 2 pillow sized bags of saline into my arms and made me drink an entire jug of water. I lost nearly a stone in weight in one weekend and now feel much reduced, as I think I may have rhabdomyolysis (or had it). So armed with the information from your site I'm off to see my general physician. Thank you very much.

Comment from: grateful in texas, 45-54 Female (Patient) Published: June 30

Four years ago I had a liver transplant. Approximately 2 weeks post transplant, I developed MRSA, could not be weaned off of the ventilator and during lab work it was noted that my CPK was over 5,000 so the docs called in my family thinking it was a heart attack. After additional testing they realized it was Rhabdo. My kidneys were already not working and I was on continuous dialysis. Spent 28 days in ICU but my kidneys regained their function. It took me a long time to fully recover because I was so weak I was unable to even lift my arms. Now I am fully functional four years later and liver is doing fine. I still have episodes of fatigue at times though.

Comment from: traderjo, 65-74 Male (Patient) Published: September 10

Five years ago I joined the Jupiter study of Crestor. I felt pain and muscle weakness with dark colored urine after the second month. I stopped the Crestor, and the pain subsided after a few days, but I still had all the other symptoms, vertigo, fatigue, weakness in my legs. Now after 5 years I feel that the symptoms have gotten worse except for the vertigo. At the time Astra Zeneca said to go to my family doctor who did blood work. He said there was no Kidney/liver damage.

Comment from: sparky, 55-64 Female (Patient) Published: September 10

I had always been strong, healthy, and overweight. Simvastatin was prescribed because of cholesterol. I became increasingly tired, felt flu like muscle weakness, tendinitis on both arms legs, headaches and dizziness as well as other symptoms that were not the "top two" the doctors asked about (cramps and pain). I had those intermittently, but passed them off as something I got from yard work, or hiking. After losing 30 pounds I was much weaker than before I began my prescription. I was sent to a heart doctor because blood tests came back showing muscle breakdown. Heart stress test was good, but the doctor was brainwashed into believing that if you could get cholesterol down under 180 you'd be wonderful. It almost killed me with the side affects. I quit my Statin, and 2 plus months later I am feeling better, but still not back to where I was. Statins work by suppressing the liver function. They keep the liver from manufacturing cholesterol, but also prevent it from accomplishing its other tasks including manufacturing other important body enzymes. For recovery you must take minerals --Magnesium selenium, calcium and more. One must take CoQ10, as this is what is necessary for liver to make for muscle repair and is suppressed by statins. Also need vitamins A and D. When on a statin you may not die from heart attack--your heart my just give out due to increased statin induced weakness affecting all the muscles.

Comment from: yaya704, (Caregiver) Published: September 11

I am a 63 year old healthy athletic male. I used to jog a lot but now speed bike a lot, about 100 miles per week. I over trained in late 2011 by biking two days in a row to keep up with younger guys. I live in hot Florida. Several days later, my urine turned dark reddish brown, and my heart rate at rest went to over 200. I could not eat or get out of bed. After three days in bed I called a nurse friend of mine who wanted to put me in the hospital. Blood tests confirmed rhabdomyolysis, but about two weeks later, all was well.

Comment from: david, 55-64 Male (Patient) Published: August 21

This is my fifth week since diagnosis and I am still weak, tired, thirsty, and above all out of breath. I just walked slowly for 20 minutes and I am exhausted. I was diagnosis exertional rhabdomyolysis. I’m 59.

Comment from: erie, 35-44 Male (Caregiver) Published: July 19

My husband was diagnosed with rhabdomyolysis. He has been hospitalized for two weeks with IV intake. He is not getting any better. The swelling of his feet, legs, ankles, and arms are horrible. He can’t even lift his own legs to really walk and get in bed.

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