At the time I also had to have my thyriod removed,but the dr's never said it was connected to the Rhabdo. Not sure what caused it.

I had to have radiation on my thyriod and seems like right after that was when I had all my problems start. It sucks because its been 3 yrs later and still I'm not well.

sorry cant type anymore hands hurt. thank you for posting.

My one-year rhabdo anniversary is a couple of weeks away, and though I've made good progress, it appears that my kidney function is going to remain low. Coupled with diabetes, this could be a real problem down the road. Did anyone else experience acute renal failure with their rhabdo? I know most of you didn't let it get that far before seeking treatment, but I'm hoping someone has a similar history and can share information about their kidney issues.

I hope everyone is doing well and making progress in their recovery.

I never had kidney issues so I can't help you on that matter. Glad to hear you're doing better. I'm coming up on my 2-year anniversary and I am doing so much better but it was probably 15 months into it before I felt significantly better. I still tire easily and sometimes still have some weird sensations in my legs, but overall, I am so, so much better. There were times I didn't think I'd ever feel better. I was so thankful to be able to share my concerns with everyone on this site who helped me feel better and not so all alone with this strange condition.

Rhabobkj: I was already in stage 3 kidney disease when I had rhabdo and my ER creatinine was 2.54. Also discovered at the same time that my thyroid had quit, TSH was 232. CPK got as high as 57000 during treatment. I was very lucky as my kidneys did not go into failure so I can't really identify with that. My 2 month post rhabdo creatinine is holding at around 1.50 which while higher than norm seems to be "my norm." I've been advised by my kidney doc that water consumption is critical, no less than 80 oz daily in addition to any other fluids I might consume.

Good luck, BKJ, and hope some of my experience might help.

I am 67 and this is my second boat with rhabdo, the first was 8 yrs ago. I am in my 6th month and still very week and very sore in my legs, shoulders and hands. should i be taking ibuprophen for pain? also when do we go back to exercising ? i do walk about 2 hrs total ea day but still having trouble with stairs. You all sure have been a blessing to me and am keeping you in prayer. have a great day, Gary

Hi,
Im almost four weeks since my onset on Rhabdo, exercise induced.
CK levels 65000. After a week in hospital and being laid on my settee for 2 weeks I finally feel human again apart from the exhaustion and massive weakness in my arms.
Thankfully found this forum while looking for some answers online. Im wanting to speak to a proffessional for aftercare and diet advice.
Normally very fit and very active having zero energy is hard to handle.
No one seems to know where to send me! I am waiting for a rhuematology appt but not sure they are going to take me on.
Feeling a little lost...

But reading the posts makes me feel not so alone! :)

Greetings, KW. I was in the hosp with exercise induced rhabdo in Feb of this year. CK level 196,000. Mine was in my quads (spin class) and my legs were so stiff and swollen I could barely gimp to the bathroom. 6 weeks later I started walk/running a little, and a month later I was running ; miles a day, although my numbers still hadn't returned completely to "normal." Today I feel no different than before rhabdo , excel that my quads get tight quicker after exercise than they used to. I think your activity level per-rhabdo plays a part in your recovery. Also, my job and kids needed me back to normal quick. Good luck to you!

Phone typos. "4" miles a day and "pre-rhabdo"

Hey Motraveler,
That's good to hear- Thankyou!

Mine was all shoulders and arms.
I am a massage therapist by trade and no one has been positive about me returning to work! Knowing your back to fitness with those levels (wow!) is good to find out.
My kids will be happy to welcom the old me back!

Thankyou ! :)

That would be rough with it affecting your work so much. I have a desk job, and went back part time 5 days after I was released from the hosp. I'm sure you will get other comments from those who did not recover quickly. I know it's not true in all cases, but it seems to me that most of those were on statins, which contributed to the rhabdo. I wonder if that affects recovery. Take it easy and let your kids spoil you for now. :)

I'm 26 months out from my last hospitalization (Sept. 2010, CPK 2,800) the first time was January, 2003 (CPK 17,000). Since my CPK was so much lower the 2nd time, I figured I'd bounce back in a couple months. I have a physical job, cleaning homes, and I was so surprised that for the first 15 months out of the hospital, all I really felt like doing was cleaning a house and coming home and doing nothing. It was a good solid 15 months before I felt like I was really making forward progress. Although I had been slowly improving prior to that, it just didn't feel like I noticed a big jump forward until 15 months.

Now @ 26 months, I still tire easier than I use to but maybe that's partly my age now (55). I never took statins and didn't over-exercise. I had a touch of a virus and maybe hadn't drank enough water and had a little stress in my life both 2003 and 2010 but nothing major but my doctor seems to think that those things, and maybe hereditary, might have all stacked up just right to cause my rhabdo.

I can't say that I have yet to feel entirely without some aches in my legs each day since 2010 but it's nothing now that prevents me from doing anything.

Back when my rhabdo was really bothering me, my family doctor, sent me to a rhuematologist who told me that I needed to see a nuerologist at the University of Kansas. As it turned out, by doing research on the internet and communicating with people on this site, it seemed I knew way more than the nuerologist!! There just isn't much info about rhabdo and communicating here seems to have been my best source, not only for info and advice, but to help me not feel so all alone. The doctors really don't seem to have anything to share with you other than "drink plenty of water".

If anyone finds out any helpful information from their healthcare provider, please post it because I know all of us fear another full-blown bout of rhabdo, because it doesn't really sap you!

hello all
i am thankful for this site as i share many, if not all of your symptoms.

my story is as follows: i joined crossfit last january. i was a runner, swimmer, exercise enthusiast for the past 10 years. crossfit changed my body though and challenged it in ways not felt before. my quads were the most challenged and i was not smart about my exercising. i got a bit addicted and worked out 6 days a week (i am 41 yrs old), was living on 7 hours of sleep, and not replenishing my muscles (eating) after major fatigue. trifecta of bad. plus i am a working mom=tiring days.

come may my quads started fighting back and would wake me in the middle of the night throbbing. then in the summer i got a virus and recovered but not fully. my strength was zapped. i felt completely lethargic. after having much blood drawn by november a cpk test showed my levels at 560. and that was when i had stopped exercising. so the dr. thought maybe rhabdo, but why was it lingering and not acute? this site seems to be the only documented lingering rhabdo.

anyway fast forward i am feeling better not not 100%. my cpk is normal. i am back to exercising sometimes 3x per week on a well rested week, but only my core and upper body. i am at crossfit but i do my own regimen, not the daily wod. my quads still ache/are inflamed but less so. i am trying to see what makes them feel worse; alcohol? coffee? less sleep? walking?

what i think i have found: alcohol is definitely harder for my body to process and recover. i have gone off coffee and try to keep extra hydrated with chamomile and green tea. eat less salt. i try and nap when needed. and put less on my schedule. i do take long walks and hike but usually need to nap after as it seems to effect me systemically after. i try and stretch a lot. i am looking into going to a physiologist to help in a more rapid recovery or at least give me some answers.

i now take these vitamins: D, C, multi, turmeric, fish oil. i am looking into starting Bromelain. i have tried light massage but i feel like that systemically tires me out and i am not sure if that is a an aide?

thank you all for sharing. i feel less alone :( :)

Hey all. Got out of the hospital last monday. CPK levels were around 132,000. Been feeling so many aches and pains in my legs and back I thought for sure I had something else wrong with me. Did me a lot of good reading these, knowing that others feel a lot of the same stuff. Kinda made it worse at the same time though... I was really hoping to be over and past this whole thing within a few weeks. Then I get on here and find out I could be dealing with this stuff for easily over a year?! Definitely depressing. This whole thing has been a nightmare. I'm only 20 years old and in very good shape. I was quite the body builder in highschool. Didn't think something like this could happen to me.

Hello To All. I am new to this site and very happy that I found this support group. I own a boxing gym in Austin, Texas so my bout with rhabdomyolysis has been quite challenging. I was recently released from the hospital after being ordered to admit myself by my GP. CK levels were at 9000 upon admittance and spiked to 26,000 at one point. The culprit I believe was a a high dosage of statin meds combined with the rigors of being a full time boxing coach. I was released after 6 days of having non-stop IV solutions pumped through my system. Truthfully I have been suffering from stiffness, fatigue, and weakness (shoulders and legs) since March of 2012 but thought it was from working too hard at the gym. It has been over 2 weeks since my release from the hospital and I still have stiff and weak feeling legs. I hear different things from different people and doctors - such as it will take 6 months to a year to recover fully. Today I saw an internal medicine doctor who could offer no clear insight as well. This site offers good support to know that there are others out there feeling the same as me. I am back at work here at the gym and trying to rest as much as possible but this condition has really made me feel depressed. It is hard getting out of bed in the mornings and hard to get up out of chairs. I walk tenderly now because of the stiffness in my legs. Any words of encouragement please?

In May, it will be 2 years since I was dx with rhabdo. Although I have basically recovered, I kept running a higher-than-normal CPK level. Well, today the test came back 197. (The high end of normal is 192.) So I'm happy, my doc is happy. It sure took a long time.