JM-there is many people who have repeated bouts of this. I am 6 months out since my initial diagnosis. I went to a neurologist and they could not find anything. I was using prickly pear juice to help reduce inflammation (worked okay). I also started doing water aerobics at my pace during the class. I am extremely amazed at how that has helped. I still have pain and cramping-like today I woke up and my whole thigh was cramped and hurt. All I can figure is that if it happens again, I will have the doctors do a muscle biopsy since right now they don't believe it will show anything. Lots of rest and drink lots of fluids. This does suck-I still can only work a few hours a day and with the water aerobics I have started taking naps again. But you know if it is what my body needs, so bit it. Try to stay positive! And like Neecee, if you need to talk email me. It is all good!

JM - I have to agree with darkangel on this - repeated bouts of Rhabdo are not uncommon. My doc has advised me that I now have a "predisposition" to Rhabdo given the same circumstances. Therefore, if I take a statin and overexert = high potential for Rhabdo. I'd guess that anyone who finds themselves in the same set of events which led them to Rhabdo should take caution and slow down. Both neecee and darkangel are correct - everything in moderation, REST and FLUIDS (water the best) are very important. Life is long, life is good - take care and caution!! LIVE WELL!! Happy Holidays to all!!

Today makes 3 months since I was in the hospital BUT I actually think I've turned the corner and am feeling better. I still take it pretty easy and go to bed early BUT I've been able to do a few more things other than work. I've been out to dinner a couple times and a couple of short shopping trips too. I don't feel HORRIBLE all day any longer and although I still tire easily, I finally think that I'm past the worst of it and hope and pray that I NEVER get rhabdo again!!! Twice in 8 years is more than enough!

neecee - CONGRATULATIONS!!! Slow and steady, well hydrated, good, QUALITY rest! Proceed with caution but it must feel great to see light at the end of the tunnel - hang in there!!

I had my blood drawn last week and it was up to 243. I'm so discouraged that it isn't going down, but has gone up slightly. I felt really alot better the week before Christmas but now I'm feeling tired and my legs feel "heavy" and achey again. I drink LOTS of H20 daily, I do physical therapy exercises and I work 2-4 hours a day so I don't feel I'm sedentary nor do I feel like I'm overdoing it but it's been 3.5 months now & although a couple weeks ago I felt I had turned the corner, I now feel like I'm taking a step backwards. Has anyone else experienced feeling better, then feeling worse again? Any thoughts or comments are appreciated! I feel so alone!

neecee - I'll stick to my last post, "Slow and steady, well hydrated, good, QUALITY rest! " I'd be cautious about the physical therapy and/or any manipulation of muscle. My "doctors" (multiple now) all agree that once diagnosed with rhabdo, the likelihood of rhabdo repeating itself within one's body is GREATER given the same circumstances. Simply put, we now have a predisposition to getting it again. I think its not unusual to have set backs - but personally (I'm not a medical professional), I'd stay away from the PT for a while and let the body repair itself. If PT is absolutely necessary, I'd expect the CPK to rise post-manipulation or exercise. That said - hang in there, we're all here to help!!

I have 10 months since that day and There are bad days yet. I have not had increase in my cpk levels but my my doctors say that wgile body is in recovery some times it happens

In my case I started to feel better after 6 months, now I work full time, some days I walk 2 hrs in a mall etc... But If I dont rest good I fell too tired ( more than just tired), no pains, no craps, just no energy.... The Good news is that next day I am ready again and my recovery time is less each month so I hope to be 100% soon.

PT is necesary just if you cant move muscles normal but not for muscles cells recovery. Recovery takes time ans it depends on each body. Relax, eat good, rest too much in bad days and dont be nervous!

For me CQ10 works good ans help me to feel better, ask your doctor about it!

Well I will go to the driving range so see you soon and keep relax !

Thanks for your responses! I so very much appreciate it. Having rhabdo is so difficult on so many levels but mostly because there is so little information out there about it. I'm going to take your advice and not do my P.T. exercises. I have a physical job (I clean houses, one per day) so maybe that is enough for me until I am back to 100%. Also, thank you for letting me know how long you've been fighting this. I can't remember how long it took me 8 years ago to feel better and I guess I'm getting a little impatient thinking I should be further along at 3 1/2 months than I am. But for the
last 3 1/2 months, this has been all-consuming and I just want to feel like myself again. Thanks again for your responses and if you have any further advice or suggestions, PLEASE let me know.

Hello, I'm new here. My husband was just released last Monday after a total of 3 weeks in our local hospital. He spent 9 days in ICU. his Ck levels got to 380,000. This was a mixture of exercise induce due to elevation. I'm happy to have found a place need where others have been through this. I've been stressing to him to take it easy. He is still very weak and sleeps a lot during the day. Does anyone know if there are any Dr that specialize in this?

Wow! 380,000 I've never read of anyone with a CPK level that high. I've had this twice. 8 years ago, my CPK was around 17,000, this time 2,800. I was in the hospital for 4 days in mid-September and still am not back to 100%. I have better days now but last week, for no reason that I can figure out, I felt awful all week. I'm sure your husband will have to take it easy, lots of rest, LOTS of water and expect good days & bad. I have an appointment in February with a nuerologist at Kansas University Medical Center (it took 5 months to get in). I'm not sure if it will lead to any real answers since my family doctor thinks both bouts of rhabdo were caused by a virus, since I really hadn't over-exercised (I'd been on a brisk walk, but nothing extremely exerting) nor do I fit into any of the other categories that commonly lead to rhabdo. I am a low-energy person to begin with, so I suppose I just need to be sure not to overdo it. You can email me at anytime or post on this site, I'll be glad to chat with you because this is a lonely thing to have since so few people know about it.

My 17 year old son had rhabdo with a cpk of 260,000 and is just home from the hospital after 6 days. He has a mitochondrial myopathy that had not caused any hospitalizations or major problems previously. I'm wondering what the likely recovery time is going to be.

That is a VERY high CPK level!! The first time I had rhabdo 8 years ago, mine was 17,000. This time when I got it in September, I went into the hospital when it was at 2,800. I'm still struggling along. It's been slightly over 4 months and I am definitely better but I still tire easily and some days my legs still ache alot but for the most part, my legs are feeling much better. Usually in the evenings, they start to ache & I get really tired & go to bed early. I wish I could remember how many months passed before I was back to 100% last time I had it. I do know that by 7 months, I was doing fine but I can't recall when I actually starting feeling like myself again. This time, I'm still not back to myself yet and I am so ready to feel good all day, every day again!! Post any questions or email me anytime if you have any questions. There aren't alot of answers out there but I'd be glad to share whatever I've learned having had this twice.

I finally got in to see a nuerologist today, a month earlier than expected, but I learned nothing. The dr. said I needed to see a muscular nuerologist, so now I have to wait another couple months to see the right kind of specialist. I don't expect I will learn anything at that point either. I'm so frustrated because I just get shuffled around and none of the doctors have any answers or good advice. I am finally feeling better but I'm not back to 100%. I still tire easily but I don't feel nearly as fatigued and the muscle aches are gone but I wish my energy level would return to what it use to be.

Hello All - Its been one year (Jan 25th) since I started "Rhabdomyolysis Recovery". Just a quick update - I feel very good and have recovered, albeit slowly from last year. Because my Rhabdo was statin/exercise induced, my doctor has now placed me on a new regiment of Niacin to control the cholesterol. I'm happy to report it is working well. Also, my doc has cleared me to exercise - I intend to begin carefully though diligently in an effort to regain some muscle strength and overall endurance.
I want to thank everyone out there for supporting each other and remaining positive!! Its important to each of us to stay motivated. As we all know Rhabdo can create a long and challenging road to recovery - here's to all of you!! And, thanks again!!

Yay! Glad you're doing well! I was comment #1 when you began this thread...I have continued to do pretty well most of the time, but have had 2 more episodes of rhabdo since my last post... Due to the repeated episodes (each of which is becoming harder to recover quicly from) my doctor is investigating whether I have a sort of metabolic form of muscular dystrophy! I have never heard of such a thing before...but I am reading up on it and it really seems to make a lot of sense. My CK levels go up only during an episode, but they're never super-high like some people who have posted levels in the six-digits. Even though I have autoimmune issues, my muscle enzyme tests are always normal, so it's obviously not a lupus or RA thing. I am interested to see where this testing may lead...