Hello everyone. I am sad to hear more people have joined this family of folks that have suffered from rhabdo but am glad to see that some are getting better.

I suffered mine back in 2010. I have since moved this year to Denver CO. I will say that my physical well being is getting much better. I have finally been able to walk up and down stairs without pain in my leg. The sun out here has helped so much also. I still have slowing of my speech and thought process since the incident but physically I am doing better. I have changed jobs to get rid of a lot of stress (which seems to have helped a lot also).

I am finally losing weight (started in October and still happening). I think this is helping my situation.

I wish all of you good luck and I hope all will get better. I do say to constantly keep asking your doctor when things don't seem right. They don't know everything and they don't know much about the side effects of rhabdo and how long it will take to get better.

Hugs to all and my prayers.

Glad to hear from you and good news that you're getting back to your old self. It's been 17 months for me and just yesterday I had an entire day with no leg pain. That is the first time in 17 months! Usually, even though I've been feeling much better, I would still at some point each day have either a "humming" sensation in my legs or they'd feel heavy or achey. Having one full day (and so far today too) without any type of odd feeling in my legs feels wonderful!

I'm so thankful to everyone on this site because there were times I felt I was not making any progress at all in my recovery, then I'd read everyones' entries and realize that what I was feeling wasn't unique but pretty much what we were all feeling after our initial bout with rhabdo.

I hope everyone is well and thanks again from the bottom of my heart for everyones' imput! Please keep posting your progress.

Hi, people, just had a bout with rhabdo about two days ago. Took ambulance ride to the hospital, spent 6 hours in emergency ward, took blood tests, CPK 483 (everything else "pristine"), was sent home. Still feel funny, particularly when I get behind the wheel of my car, haven't even tried to drive anywhere. I'm in fantastic shape, but I've had slow-creeping weight issues, punctuated by sharp increases, particularly over the past year. I think that I had an episode back in 1999, ignored it, tried to tough it out, to my own regret. Crazy things happened to my body and mind, did some things that I now regret. Got through January OK, after hyperextending my calves back in October. Then, I had a dizzy/disoriented incident back on February 4th while driving. Had to stop and call a cab to take me home. That's when this most recent episode began. I hope to feel stronger by next weekend, maybe start running my own errands. I know exercise takes much longer, will consult family physician. People, don't do anything crazy during an attack. If you feel weak, call your doctor or nurse practitioner first. Sucking it up does nothing, its visceral muscle around the circulatory and GI tract, not striatal muscle used in movement. Not sure about the pains, taking antacids and drinking water in order to flush out threats. Advice and feedback appreciated. Thanks.

I need some advice. I have a son that was diagnosed with Rhabo about 2 years ago and has hoad trouble ever since. He is 14 and every year since the issue he suffers greatly when he starts athletics. He is so exhausted that he can't function and his legs always hurt a lot. The doctors tell me that it is just muscle pain, but he really suffers. Has anyone experienced any long term side effects from the Rhabdo. Everything that I read and the doctors tell me there are no long term muscle issues.

I came down with rhabdo in September 2010 so it's been 17 months (almost 18 months) and I do not have my strength or stamina back yet. I'm much better but if I do too much, my legs get so tired and I just feel wiped out. This week, I cleaned a large house on Monday and then two houses on Tuesday. By Tuesday evening, my legs felt heavy, achey and tired and I was just feeling worn out. I think each person is different, but for me, it just doesn't seem like I can get over this entirely. I am much better but I can't go at the pace I use to be able to and it's my legs that are the biggest hinderance.

I have been "recovered" from rhabdo since June 1, 2011. I put the word in quotes because, although my blood tests were finally normal, I continue to have muscle aches in the back of my legs when I overdo it, and I still have recurring tendon issues in my upper arms. I really don't think physicians have a good handle on the ramifications of this disease. If it were not for this Daily Strength website, I would be a total basket case with worry. But as I read through the entries from everyone who has suffered from rhabdo, I came to realize that lingering muscle problems are common.

Hello, I was dx w/ Rhabdo 3 yrs ago and was in the hosiptal for 7 days due to it n having a high CPK. I still haven't recovered from it. I still have problems and I wonder if they will ever go away. Still can't work, have trouble walking, PAIN IS CRAZY and muscle spasms out the roof along with other things. Not trying to scare anyone, but I got to the point,the pain is so nuts even w/ high doses of Narc, I just dont no anymore. Doctor's say I got Firbo now, but something else is going on that just hasnt manifested itself yet. Start's w/ Rhabdo and now Fibro? something isnt adding up here. I just changed dr's and we'll see how it go's. I have even talked it over with my husband about going to the Mayo Clinic,and we are seriously considering it, I have NOOO LIFE AT ALL and even my husband has said I'm not the same woman he married and he's SOOO right. I hope no one of you have to deal with this long term like I have been because it' s no way to live. Good luck to everyone of you! :)

Wow, some of you have symptoms from rhabdo you contracted years ago? Your doctors have ruled out any other reasons for the symptoms? I got it not quite 5 weeks ago from a combination (my doc thinks) of a tough spin class in a hot room, very little hydration, and Wellbutrin. My quads were shot after the class, and continued to get worse, but I just thought it was sore muscles until my pee turned brown 3 days later and my legs were swelling and I had to pick my legs up with my hands to get in and out of my car. Admitted to hosp. with CK level of 196,000 - scary. I had the roommate from heck, and convinced my dr. to let me go home and rest and push fluids (no kidney damage detected so far), when my level got down to 92,000 four days later. Follow-up with doc 2 days later and my level was down to 48,000. I go for another check-up next week. My liver enzymes were still elevated at last check-up as well - they may do an ultrasound if that's not better.

I returned to work half days less than a week after I got out of the hosp., and full days a few days after that. My workload is very heavy and this is our busiest time of year, so I had to get back. I'm a runner, and this week I've started trying that again, but my legs are so weak it's been a little rough - was able to run a mile this morning, and walk/run another 1.5. Other than being exhausted at night when I get home, and not being able to stand from a squatting position or run much, I feel OK. Those of you who are still exhausted and can't work - I'm curious if your rhabdo was from statins or exercise induced?

Thanks.

@motraveler11--My rhabdo was from a combo of exercise and a statin drug. My cardiologist said "no exercise at all" until blood levels were completely normal. It took me many months to be able to do normal things, but even now I can tell if I overdo it.

I've had rhabdo twice, 2003 and again in 2010. I'm still not back to 100% from my 2010 bout. Mine, both times, my doctor believes was from a small combination of things that just went haywire in my body. I had exercised, been under some stress and maybe a little dehydrated plus both times I'd had a sore throat, so probably a little virus. None of these things were bad but my dr. seems to think they all multiplied upon one another and that's how my rhabdo came about. I've never been on statins. I'm amazed with a CPK level as high as yours that you are able to work full time and run (any distance). I still feel it in my legs with a heaviness and a muscle humming sensation when I overdo it, or don't eat on schedule or get too little sleep. It's been 18 months since my CPK level was elevated but only to 2,800 but I just can't seem to get entirely back to 100%. Best wishes to you. BTW: I'm wondering if you're in Missouri from your name? I'm in Lee's Summit, Missouri. Write anytime if you have questions, we are all here to help one another and I have found this site a great help in not feeling so alone with this odd disorder.

For those of you still suffering from symptoms after months, even years after rhabdo, have your doctors ruled out any other diagnosis or is it definitely related to rhabdo? Nothing I have found online indicates that long term, and I am wondering for my own recovery.

My bout began not quite 5 weeks ago from a combination of (my dr. believes) a tough spin class in a hot room, inadequate hydration, and Wellbutrin. My quads were shot immediately after the class, continued to worsen and swell, and 3 days later when my pee was brown and I could barely walk, I went to the ER and was admitted to the hospital with a CK level of 196,000, which appears extremely high compared with most of the other posters here. 4 days in the hospital on IV, and at my urging, my dr. released to go home and rest, push fluids, etc. Upon release my CK level was 96,000. Two days later at doc's, it was down to 42,000.

I went back to work half-days in less than a week and full time a few days later. My workload is heavy, particularly this time of year, and I needed to get back. Other than very weak legs, which are still a little stiff, and being very tired at the end of the day, I feel good. I am a runner and have just started trying to run again this week, but can only do 1-2 miles at this time, which is a little discouraging.

I go back to get my levels checked next week - my liver count was also still high last time, and they may do an ultrasound. I am curious if those of you who are unable to work/exercise a long time after rhabdo contracted it from statins or from exercise - I wondered if that might make a difference in recovery time?

Thank you.

I have had rhabdo on and fof for about a year. My cpk level were never extreme only about 2000. cpk has never been less then 400. I'm 23 and developed it about a year ago training for a body building show. It seemed to have gone away after a few weeks after the initial diagnonsis. I recently have had it come back 3 times in the last 3 months. I also received the answer that it was exertional and that I just get it easier then others. The thing I don't understand is that I have trained hard my entire life. Why now does it just develop? Unlike others resting almost makes me feel worse. Walking seems to bring some relief. Lifting weights is something that I cannot seem to do at all. After my first episode i went about 6 months with minor symptoms.. and i was exercising hard. I'm seeing two DR's currently my primary care and the other a sports medicine DR. They seem both to believe its a combation of exertional and non exertional....which makes no sense to me. They will not look further into other causes disease/ Myopathys yet. After my 2nd flare up about two months ago i quit exercising for about 5 weeks came back worked out a for a few days and was great. I took a few days off came back and boom. It felt like it came back instantly. I rested two more weeks, felt great, exercised one day, and boom back again. The first time I developed rhabdo the muscle deteration was so severe that I had brusining up and down my legs. I have not had that yet and hope I do not. THe one thing that never recovered from the first bout was my calves. Since then they have felt tight, throbbing, and ache all day no matter what i do. that hasn't changed since I developed. I also have trouble thinking, dizziness, speech impairment when the rhabdo flares up. I can hardly function but I cannot afford to miss work. I also get the wierd cramps..especially getting up and out of a chair, climbing stairs, and reaching across my body. Also my kidney and liver never really got that bad as I have always drank 1-2 gallons of water day since high school...

Any recommendations would be appreciative as like others,I am frustrated and on the edge of depression. Thank you!

I can understand feeling like you are teetering on depression because you just don't know what to do to get back to 100%!! My 2nd bout of rhabdo was in Sept. 2010. My CPK was not all that high, 2,800, and I spent a few days in the hospital and really thought I'd bounce back quickly since in 2003 my CPK had been above 17,000 and it took me about 6-8 months to feel like myself again so with a lower CPK level, I thought it would be behind me quickly. But this time, I still have not gotten back to 100% yet. At about 15 months, I really started feeling significantly better but it's been a slow process. I'm much older than you (54) and I've never done alot of exercising, although I've always walked several days a week and I have a physical job, I clean houses. Why I've had this rhabdo twice is a mystery, but my dr. thinks it's a combo of things (a touch of a virus, a touch of dehydration, stress, etc.) and all these little things went haywire in my body. I've heard that once you get rhabdo, you may tend to have reoccurences but again, I don't think doctors really know that much about rhabdo to give you any definitive answers. The so-called "specialist" I saw did not want me doing anything that would strain my muscles, so some of what you're doing, I know she would have recommended against but I'm sure you could talk to another "specialist" who would tell you differently.

For me, the best help is this chatsite where I can read what others are going thru. You mentioned your calves feeling "tight" and I remember I had that feeling frequently the first time around. You also mentioned weird sensations in your body, and I understand that too because I had these weird stomach muscle sensations several months ago, which have mostly disappeared now. Sometimes I'd think "what is happening" then I would read thru everyone's posts and see that alot of what was bothering me, others were also complaining about and that was comforting to know my symptoms weren't unique.

I wish someone could give us exact answers to our questions but until more research is done, I think we will need to rely on each other. We are here for you. Post anytime because, for me, this site was the one tool I had that helped me thru the worst days. You may also email me directly if you want: neecee5775 at yahoo.com

Thank you for the reply neecee. It seems as though you are correct about the knowledge of the disease. I've been a very athletic health concsious person my entire short life :). To suddenly get the disease is unusual. The hardest part is the absence of exercise. I'm a competitive body builder where muscle mass is very important. To have a muscle detereating disease is well crappy. I've somehow mannaged to maintain what muscle mass I have yet no one believes i have a disease. I also have the cramping and excessive fluid retention. I hold about 10-20lbs of extra fluid then normal....I just want to be able to lift weights again.

Try to take it easy. You may have to cut back for awhile in order to get better but I agree with you that I feel better when I get up and take a walk than when I sit, although in the beginning, I couldn't walk very far at all and was too wiped out to do anything but drag myself thru cleaning a house. You're drinking lots of H20, which I've always done, and that is the one thing that seems to be universal advice from all of our doctors. I also started taking CoQ10 after reading on this site that others had started taking it. I don't know that I felt any immediate relief but now that I'm taking it, I'm going to continue for fear of changing anything and taking a step backwards. I've had a very healthy life so this rhabdo has been very troublesome for me, physically and mentally, but chatting with others sure has helped.