Rhabdomyolysis - Long-Term Recovery & Chronic Pain

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?

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

@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 ...

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

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?

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 ?

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!

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.

i woke up one day and my whole left leg was swollen.i ended up at the hospital a few hours later.i could barely move my leg.after blood tests and a cat scan they said i had rabdo with my creatin (spelled wrong i think) was runnin a little over 8(im not sure if that means 8000 or not).after two weeks,antibiotics,blood thinners,pain meds,and lots of fluid,a few sessions of dialysis because my kidneys almost shut down,they never did find a clot or any reason this happened. its been 3 months of constant mid grade pain in my foot and lower leg that does not seem too be getting any better.i had too fight too get gabapentin for the pain.most doctors act like im making this up because they never pin pointed a cause. this is very frustrating cause i cant walk right,i lay in bed most days cause staying off my foot is the one thing that eases the pain. doctors have been no help.i feel let down by the medical community. i read your post and mentiond the flexeril might help,so they wont let me try it because i mentioned it like im some drug seeking low life.im not sure who i can turn too for help.im sorry you wwere looking for help and imnot any help but just needed too get this off my chest cause im getting depressed and hopeless and dont know who too turn too. i hope you start to get better in time. take care

Hi @upde72 and welcome to Mayo Clinic Connect. I am sorry you are going through this. It is never pleasant to feel like you can't find proper medical treatment for your needs.

Here are a couple of links that might be helpful. Rhabdomyolysis: https://www.mayoclinic.org/diseases-conditions/heat-exhaustion/multimedia/vid-20078262
Rhabdomyolysis - Management & Treatment: https://my.clevelandclinic.org/health/diseases/21184-rhabdomyolysis#management-and-treatment

Have you reached out to Mayo Clinic to determine if you can be see there?