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Rhabdomyolysis - Long-Term Recovery & Chronic Pain
Hello everyone! After searching through discussion groups, I couldn't find any posts that specifically discussed experiences with rhabdomyolysis. I am hoping to connect with anyone who has had a similar experience. Long story short, June 2018, I went by ambulance to the ER as my entire body was cramped up and in severe pain. I was diagnosed with rhabdo with a CK peaking at 6,000. While that is considered "mild", it doesn't consider the effects. I spent 5 days in the hospital undergoing every test possible: blood, CT, ENT, X-rays, etc. My phosphorus was undetectable. I was pumped with fluids. My leg muscles, specifically my calves had completely atrophied and I could not walk. I needed nurse support to get out of bed. The doctors called me a "medical mystery" since I did not get rhabdo a typical way (exertional, crush, etc.). Since I had a significant cough for two weeks prior, they settled on it being virally induced. Diagnosis by elimination. I did PT and OT for 2 days in the hospital working with a walker. At home I used a walker for a few weeks until I could get my feet and legs in the position to walk. Then I used a cane. I had in-home PT and OT throughout that summer and did PT at a clinic for 5 months, dismissed to do PT on my own at my gym. I regained my ability to walk independently, but a year and 2 months later I am still dealing with chronic pain in my calves, low stamina and endurance, chronic fatigue, difficulty walking any long distance or on terrain that is not flat. I started seeing a musculoskeletal specialist who diagnosed me with fibromyalgia. I've been on gabapentin and cyclobenzprine (Flexeril) since February and the doctor is convinced I will recover with this treatment, but now I'm not convinced...I have really plateaued. This has caused me to take a leave of absence from work and affects my life profoundly. If you have also suffered from rhabdo and the physical effects sustained from it, I would love to chat more. I'm looking for answers as I want to recover as completely as possible. Thanks!
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@alizawerner I realize this post is old, I hope you are still around.
How are you doing now? I'm recovering from what is assumed to be Statin Induced Rhabdomyolysis. I discontinued my meds almost 10 weeks ago. My muscle pain actually increased significantly to unbearable about 3 weeks after I discontinued the Lipitor. Right now I'm able to get out of bed and walk to the bathroom, down the stairs, and cook dinner sometimes if I'm feeling OK but too much movement aggravates the pain. I'm also suffering with Angioedema which could be caused by the statins too. My kidneys were in failure in mid June (GFR 14) but have improved to GFR 40 2 weeks ago.
From what I've researched recovery period is 2-4 months after discontinuing the drug. I'm worried that it is not the end of the road for the Rhabdo. Providers dont seem to know enough to help me understand what I need to do to improve recovery. Any helpful info you can share would be great!
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4 ReactionsThank you for sharing your stories about your Rhabdomyolysis. I was rushed to theE.R. i didn't remember anything for 2 and 1/2 weeks. I just woke in a hospital bed one day. CPK, like yours was 7,400. Normal is about 60-80.
I had to rely on my husband to fill me in. And. I have ALL of my medical records. I don't ever want to go through that again.
It is a RARE disorder that causes muscle tissue to be destroyed.
Question is how did I get it? Lipitor and Covid 19 vaccinations seem to be
likely .
It's nice to find someone else who had the same disorder. Pat
I just hope ot doesn't come back...I am going to ask my PCP to stop my lipitor.
Thank you again, Pat!
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4 ReactionsHi, same here. I am afraid mine will come back too! I would not wish Rhabdomyolysis on my worst enemy.
Please contact me ot leave a note here.
Thank you, Pat
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1 ReactionWow!!! My CPk was not nearly as high as that! How is he doing now?
Pat
Looking for answers....I am 70 years old and I have had rabdo twice in the past five years. The first time was from statins and my cpk was over 9,000. The second time I am not sure what it was from but the doctor suspects THC Gummies I purchased at a flea market, my cpk was over 6,000. I have had a real challenge recovering this time. My muscles get hard, I am totally fatigued and my leg muscles become sore and exhausted. I am getting worried I will not fully recover. I was not aware you could get rabdo more than once. It has completely altered my life and I am concerned all of the time I will get it again. This last time it was mainly in my stomach, trunk, sides and back, it felt like a boa constrictor was squeezing me, I could not breath. Now about once every 2 weeks my upper thighs become hard as rocks, hurt like crazy and I can barley walk. My legs feel swollen and tight. I recently moved to Arizona and I wonder if the heat is aggravating me. Does any one have any words of wisdom? A like experience? Suggestions? I could really use some encouragement.
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4 ReactionsI made a mistake, my second bout of rabdo my cpk was 9,967. The first time I had it my cpk was 30,000.
On September 12, 2024; I had a seizure @7:30 PM, I was not found until 10:30PM I arrived at the hospital via ambulance at 11:23 PM but by that time it was too late and i was in cardiac arrest, kidney failure, liver failure RHABDOMYOLYSIS had already ravaged my body and I remained in a coma until October 4th, 2024. When I came out and woke up, I found that my body both mentally and physically were reset. I had to learn how to talk, walk, grasp with my fingers, I was like a reset android device. To this day Friday Nov 7, 2025 I am still dealing with my equilibrium, balance muscle strength, inability to perform the most menial tasks, like buttoning the cuffs of my shirts orhaving the strength to tie my shoelaces, brush my teeth and hair. I am dealing with having to prepare meals for my service animal and my inability to walk long distances means I have to take my dog for 6-7 short walks daily. I vomit every night before bed. I hardly ever eat and I have gained 67 lbs. My PTSD is so severe, I was diagnosed with kidney failure which resulted in several months of dialysis, 2 x's weekly, I never once was under more than an antibiotic or mild pain relievers, and now I inhale 17 medications 3 x's per day that's 48 pills a day! I, 11 months out have lingering muscle pain weakness, spasms etc. throughout my entire body. Yes I know what you went through.
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5 Reactions@paktoledo sorry for not replying sooner. Last year for several months I complained to my pcp about weakness. I was told to lose weight and exercise. Finally they performed stress test, lung test, etc. one day walking into house I fell down and was unable to get up. I had to call the fire department and they helped me get to a chair. I called my doctor and they ran a CK test and my numbers were almost 8,000. I was told to stop statin and retest in a week. I was barely able to walk and get test and it came back slightly over 10,000.
I was sent to the ER immediately and when they ran test again it climbed to almost 11,000. I was admitted and was in for 51 days. I had several months of therapy and able to walk almost normal. But I will be on medication for live because of the statin.
You will get through this battle
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