Rhabdomyolysis - Long-Term Recovery & Chronic Pain

Posted by alizawerner @alizawerner, Sep 10, 2019

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!

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

@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!

Please sign in or register to post a reply.