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!

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Profile picture for alizawerner @alizawerner

Hi all,
Thanks for chiming in with your experience. It sounds like my rhabdo experience is different from yours. I know the ins and outs of what rhabdo is, and it can be caused by numerous things. I appreciate you responding!

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@alizawerner
I just came across this post after looking for something and wanted to reply so you or others maybe could benefit from our experience. My husband had similar symptoms as yours. After a year, a PT suggested it might be a rare condition called Diabetic Amyotrophy. My husband wasn’t diagnosed a diabetic but we went to a neurologist and he was certain that’s what it was. Most doctors, even the endocrinologist, had never heard of the disorder. It’s debilitating. It takes 1-2 years and lots of meds to get through. My husband is walking and driving again though.

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Over 25 years ago my partner, now deceased, was crippled with pain. Based on research I found on the old early 2000’s internet (research papers by a doctor for NASA astronauts and a local Northern California doctor who identified statin drugs as the culprit), my partner discontinued statin drugs, against doctors orders, and started taking Astaxanthin for statin induced muscle rhabdomyolsis. Doctors denied that crippling muscle pain was caused by statins, contrary to my research.

I also learned that Astaxanthin was given to race horses that developed muscle rhabdomyolsis. my partner’s crippling pain was relieved by this supplement after discontinuing his prescribed statin drug. Today doctors are aware of this statin drug side effect for many. I still take 12 mg BioAstin Hawaiian Astaxanthin for my fibromyalgia and chemo nerve pain issues and other health benefits. I buy it online from Costco.com.

I wish you the best in your quest for recovery!

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