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!

Hello @alizawerner, and welcome to Connect. I'd like to invite a few members back to Connect that previously talked about rhabdomyolysis. @bonnieh, @jerry4info, and @pamelars60 all mentioned rhabdo in the past.

Here are a few other discussions on Connect you may find interesting according to your other diagnoses as well:

– Chronic Pain > Feeling at my whits end with chronic pain and fibromyalgia > https://connect.mayoclinic.org/discussion/feeling-at-my-with-end-with-chronic-pain-and-fibromyalgia/
– Chronic Pain > Fibromyalgia > https://connect.mayoclinic.org/discussion/fibromyalgia-3/

@alizawerner, how does your fibromyalgia play affect or associate to your rhabdomyolosis? With both diseases causing muscle pains, have your providers been able to pinpoint the cause, or do they think it is a combination of both?

REPLY
@JustinMcClanahan

Hello @alizawerner, and welcome to Connect. I'd like to invite a few members back to Connect that previously talked about rhabdomyolysis. @bonnieh, @jerry4info, and @pamelars60 all mentioned rhabdo in the past.

Here are a few other discussions on Connect you may find interesting according to your other diagnoses as well:

– Chronic Pain > Feeling at my whits end with chronic pain and fibromyalgia > https://connect.mayoclinic.org/discussion/feeling-at-my-with-end-with-chronic-pain-and-fibromyalgia/
– Chronic Pain > Fibromyalgia > https://connect.mayoclinic.org/discussion/fibromyalgia-3/

@alizawerner, how does your fibromyalgia play affect or associate to your rhabdomyolosis? With both diseases causing muscle pains, have your providers been able to pinpoint the cause, or do they think it is a combination of both?

Jump to this post

Hi Justin,
Thanks so much for the reply and hoping to connect with any of the folks you mentioned, if possible.

I saw that thread in Chronic Pain about fibro, thanks again for linking it.

I was diagnosed with fibro several months after rhabdo when my calves/legs were not getting back to normal. I have been treating the fibro since the end of February, but I have plateaued for the past several months. My specialist is confident that my medication will resolve all pain and weakness in my legs, but I am growing less optimistic every day. Rhabdo in general should allow people to heal, but I hit a ceiling and haven't made major progress since then. That's why I turned to Connect at Mayo. My therapist recommended I seek some discussion here. I am also part of the only two rhabdo Facebook groups (that I know of), and the accounts of people there vary wildly in experience, but there are many of the same symptoms, side effects, recovery process, etc. I have found that to be a very helpful place to gain some new ideas and insights, but especially for support.

Thanks again,
Aliza

REPLY
@JustinMcClanahan

Hello @alizawerner, and welcome to Connect. I'd like to invite a few members back to Connect that previously talked about rhabdomyolysis. @bonnieh, @jerry4info, and @pamelars60 all mentioned rhabdo in the past.

Here are a few other discussions on Connect you may find interesting according to your other diagnoses as well:

– Chronic Pain > Feeling at my whits end with chronic pain and fibromyalgia > https://connect.mayoclinic.org/discussion/feeling-at-my-with-end-with-chronic-pain-and-fibromyalgia/
– Chronic Pain > Fibromyalgia > https://connect.mayoclinic.org/discussion/fibromyalgia-3/

@alizawerner, how does your fibromyalgia play affect or associate to your rhabdomyolosis? With both diseases causing muscle pains, have your providers been able to pinpoint the cause, or do they think it is a combination of both?

Jump to this post

@luannfuller

Hi, the main reason "cells break down" is due to the high levels of free radicals…. and, most of the times, free radicals are a sub-product of infection.

So, I can bet that you are suffering of antioxidant deficiency

Look on amazon for packets of liposomal glutathion or
Liposomal Vitamin c

Take 6 packets per day, one per hour and next Friday tell us how you feel …

REPLY

My husband had a reaction to dacotymycin he was getting for an infection and as a result got rhabdomyalisis. His CPK was 52,000!

REPLY

Hello @luannekaylee. You may notice I merged your discussion into another discussion titled, "Rhabdomyolysis – Long term recovery & Chronic Pain." I did this so you could meet @alizawerner who recently posted about dealing with this diagnosis as well. If you are replying by email, click VIEW & REPLY in your notification and you will be brought to the new location of your post and so that you can read @alizawerner's posts.

@srmora1, welcome to Connect. Community guidelines state members need to be careful about giving out medical advice and that sharing your own experience is fine, but don't tell other members what they should do. https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/. Is this a diagnosis you have dealt with personally and had success with the above regimen you shared?

REPLY
@JustinMcClanahan

Hello @luannekaylee. You may notice I merged your discussion into another discussion titled, "Rhabdomyolysis – Long term recovery & Chronic Pain." I did this so you could meet @alizawerner who recently posted about dealing with this diagnosis as well. If you are replying by email, click VIEW & REPLY in your notification and you will be brought to the new location of your post and so that you can read @alizawerner's posts.

@srmora1, welcome to Connect. Community guidelines state members need to be careful about giving out medical advice and that sharing your own experience is fine, but don't tell other members what they should do. https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/. Is this a diagnosis you have dealt with personally and had success with the above regimen you shared?

Jump to this post

Hi, about 4 years ago, I was diagnosed progressive multiple sclerosis that is the destruction of the outside of the cells called myelin and, by doing my own reasearch, the only explanation I found was free radicals so I started drinking high doses of antioxidant liposomal vit c and the pain disappeared.

Checking the tweets from @Mayo , I read about
Rhabdo-myolysis " cells break down " = looked too similar to MS and thought my findings could help..

Where @luannekaylee and @alizawerner werner able to read my non medical suggestion -story ?

REPLY

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!

Liked by srmora1

REPLY

About 13 years ago, I had rhabdo following a liver transplant, staph infection. My kidneys failed for 3-4 weeks and I was on dialysis. It kidneys eventually recovered and I had profound weakness with PT/OT/ speech therapy because I was on a ventilator for a month also. I eventually recovered but still have weakness in my legs with overexertion or fatigue and I have chronic pain from fibromyalgia. I returned to work and still manage but I will admit that it can be very hard at times. Flexeril helps and sometimes Gabapentin but I really hate to take it because it makes me sleepy. I have had better pain control with topicals most of the time but sometimes nothing works. Pain meds just don't help. I usually use biofreeze or Sombra. My doc says just keep pushing through because most likely I will always have it. It also doesn't help that I take antirejection medications. I'm sorry that I haven't been able to help you much. I have to Pace my activities; which is hard with a busy working schedule and hobbies; and be careful not to overdo it and make sure that I get at least 7-8 hours of sleep a night. Bicycling with a recumbent bike helps also. Weather seems to make a difference too. Pain is worse when the barometer drops and storms roll in. Just hang in there and keep going. If your like me, I'm just glad to be alive and cherish every moment I have whether I have pain or not. Good luck.

REPLY
Please login or register to post a reply.