Hang in there! I'm at 20 months and I still tire easy. I don't get cramps but my legs get very tired and achey, and as I've stated before, I have a "humming" sensation in my legs, most usually when I'm tired. A "specialist" I saw at the University of Kansas told me not to do any kind of exercising like squats or stretches, just to walk and try to add to my distance and pace slowly. I say she was a "specialist" in quotes because even though she was suppose to be "highly knowledgeable" about rhabdo, I felt I told her more than she told me! I really don't think the doctors know much about rhabdomyolysis. I have not returned to her and just deal with my family doctor when I want to have another CPK test. Mine seems to be holding at around 250 since I've had this 2nd bout of full-blown rhabdo. But mine was never as high as yours. I was admitted to the hospital in 2010 when it was 2,800 and discharged when it was 1,800. It took a few weeks to get it into the "normal" range but for me, the new "normal" seems to be around 200-250.

I can function and work and socialize but a day hasn't passed since September, 2010 that my legs have not ached but it's manageable.

Please post whenever you meet with your doctor and keep all of us informed! Thanks everyone!

Its now been nearly 3 weeks since I was admitted to hospital. My CK levels were reading at 900 when they were checked 3 days ago so its going well. I feel better now to the point where I dont ache everytime I get up from my chair or go up the stairs. However one thing I have noticed that has been happening, is that some days I can feel absolutely fine and then the following day ache all over. I find this unusual and still havn't figured out why this happens. Strange! The doctor has advised me to keep resting and definately not go to the gym which I don't think I shall be attempting for a few months yet.
I have been going on walks to build myself up the past few days and I find it really shocking how much I struggle, when I think back to before the rhab I would run this distance twice over easily. I suppose this is to be expected though. I too am finding it really hard as i've always been an active person and never spent so long away from the gym. From reading about other peoples experiences I am slightly concerned on whether I will ever be able to train in the gym at the same intensity again without risking a repeat of rhab. Hopefully I will...I'm hoping age is on my side but we shall see!

Glad your CPK is head down. That always makes you feel better (mentally as much as physically)!

I know exactly what you are saying. When I was feeling worse a few months back, I would have days where I "almost" felt fine and then out of nowhere, I'd feel awful for a couple of days.

The first time I had rhabdo, I was 46. This time I was 53 (I'm now almost 55). It has been much harder on me this time. I don't know if that's due to age, previously having it or if it's just the way it is for no specific reason. I do know I felt better much, much sooner than I have this time!

Thanks for posting. Keep us informed on your progress! xoxoxo

I went to the doctor yesterday and I actually was able to get somewhere with him. He said that unless you myoglobin and CPK is high that you are no longer expeirencing rhabdomyolysis. He said the symptoms have to be related tosome other disorder. I had mentioned to him that my hemoglobin was high, but he said people that live at higher altitudes tend to have higher red blood cell counts. We went ahead and did a full blood count blood test just to count it out. He calls me later that day and says that my red blood cell count is too high to ignore, so he is doing a blood smear and is sending me to a hemotolagist.

Well....AGAIN we get conflicting reports from doctors! The specialist I saw (a neurologist at the University of Kansas Medical Center) told me that after having rhabdo, once your CPK returns to a "normal" range, the muscle aches, twitches and fatique from rhabdomyolysis can linger on for many, many months and that you will need to slowly rebuild the damaged muscles before all the side affects are alleviated.

I'm not having muscle aches only sometimes, but I'm dizzy, have headaches, and have get fatigued easily..So now step one is hemo, then rheumaologist, then neurologist, and then lasty ....physcologist?!?!?!

I've been in this rhabdo group for a year, and it has been a blessing. I have not been feeling great for the past 2 weeks or so. The doctor did a CPK (for rhabdo) and a TSH (for thyroid). It turns out that my CPK is down to 252 (still considered abnormal by my doctor) but I am also hypothyroid (under active). He started me on synthetic thyroid hormone, and in 3 days I am so much better. I joined the Hypothroidism Support Group on this website. It's amazing to me how many folks there have similar complaints to what we have here. I'm just wondering if those of us with prolonged rhabdo also have something else like a thyroid problem.

Thanks for posting. I had my annual exam last week, which includes a full blood workup and my thyroid was normal BUT you might be on to something. Possibly others might want to have theirs checked. Any info on here is good info so thanks for posting! Glad to hear you're feeling better too!

I've had my blood checked and it turns out I have an underactive thyroid and low testosterone. I had a feeling there was somthing up for the past 18-24 months but didnt chose to follow it up as I thought it was probably nothing and would pass. I now have a feeling that this may have contributed to me being diagnosed with rhab... makes sense in some ways as I was probably pushing myself too much in the gym whilst my body was working overtime anyway with the thyroid levels. I'm due a blood test tomorrow again to get some more results for my cpk/thyroid and testosterone. Looking forward to returning to normal hopefully! although I'm guessing this will take a good while

Went to the doctor today, and had a peek at my chart while we were talking. He told me NO EXERCISE at all. He said I can go for a walk. My CPK is in the acceptable range at 133, but he told me that they are also monitoring another enzyme, aldolase. This count was higher than he would like last time, and he says that is why he thinks there is still recovery time to go. I am researching that more, but from what I have read so far, it kind of goes hand in hand with the CPK results.

More to come.

Wow, this is a great group. I am learning a lot by reading everyones posts. Thank you all for sharing your stories.

I am 30 year old male, and I got exercise induced rhabdo after a very intense Crossfit workout in July 2011. My CPK levels were at 180,000 and my liver enzymes were extremely high too - I had what the doctor called "rhabdo induced hepatitis", but I was under the impression that it was only a short term diagnosis as my body was healing from the workout.

After my workout, I was in extreme pain (myalgia), had lots of swelling and could not fully straighten my arms. I had never felt like that before, but I thought that I was just EXTREMELY sore and being the stubborn guy I am - I just iced my arms and did lots of stretching. And like an idiot, I went out and ran 3 miles in 90 degree weather the very next day. I was very sick and throwing up when I got back to my house.

A friend who is a crossfit trainer told me she thought I might have rhabdo and lo' and behold, I had the classic "coca-cola" urine shortly thereafter and went to the emergency room immediately. by that point I knew what was going on and I wasn't going to take any chances. I was hospitalized for 5 days and released when my CPK levels were still 20,000 because I was recovering so fast. I think my quick recovery was due to the fact that I was in excellent shape and I ate very healthy and I drank gallons of water for weeks and weeks to halt and reverse any potential kidney damage.

Fast forward to now I am starting to notice things with my heart - I had palpitations a few time for the very first time this year and I don't think it had anything to do with stress or anxiety, but I could be wrong. I keep seeing the buzzwords "cardiac myopathy" that others have been diagnosed with, and it makes me a little nervous. Sometimes my heart beats so hard that my whole body moves with each beat. I honestly don't really remember if this stuff happened before the rhabdo.

Also, I feel sick for days after drinking alcohol. It seems worse now than it did before. So I am worried I may have some long term liver damage (I am going to see a doctor tomorrow about this btw). I don't drink too often, but I drank a LOT the last two weekends and something just doesn't feel "right" in the days after if you know what I mean. It's subtle, but it's different than my typical hangovers.

It only recently occurred to me that these changes may be due to my bout with Rhabdo. I never really felt that bad after my bout with rhabdo and I started exercising again within a few months and gradually increased the intensity over time and I am back to where I was now with no issues (that I could feel anyway). But it's starting to occur to me that there may have been damage and it may only now be manifesting itself to a point where I am noticing the signs and symptoms. Hopefully i have not been causing more damage to my body without realizing it. I didn't purposefully neglect my health. I am just blissfully unaware at time. If I have to quit drinking, it would be tough but I would do it.

Anyway, sorry for the long message. But does any of this resonate with anyone? Anyone have a similar experience? I will follow-up soon with the results of my next visit and maybe we can put some closure on it or at least I may be able to provide someone with some useful information.

Well, my CPK was never nearly as high as yours. The last time I was hospitalized with rhabdo (Sept. 2010), it was only 2,800 and I've never had any kind of kidney problems either of the 2 times I've had rhabdo BUT I have still had a tough time recovering from all the aches and pains and "oddities" that I've seemed to have developed after my 2nd bought of rhabdo (the first time I was hospitalized with it was Jan.2003).

Anyway, after the first time, within about 8 months nothing seemed to bother me but this time, 20 months later, I still can have aching legs, sometimes a humming sensation and like you, if I drink more than usual, it seems to just wipe me out. I'm a very petite 55 year old woman (95 lbs, 4'10") but having 2 margaritas shouldn't be THAT hard on me and last week that is what I did and I felt run down the rest of the week! Beer does not seem to bother me that much. I probably have 2 beers maybe 2 nights a week maximum with no side affects but the hard liquor, or all the sugar or something in the 2 margaritas I had really hit me hard. I've also noticed that red wine makes all my joints hurt since having rhabdo, so I avoid it altogether. By no means am I a heavy drinker (never have been) but anything other than a couple beers does seem to bother me anymore.

I have also gone thru spells in this last 20 months where I felt my heart was beating very heavily and pounding in my chest (this was not after drinking a beer or exercising) but just sitting on the couch.

I tend to wonder if all the stress from the worry of another bout of rhabdo has caused this to happen or I'm so aware of all my aches and pains now that I'm hyper-sensative to any odd feeling my body has.

But there's no denying that I get tired WAY EASIER than I did prior to my 2nd bout of rhabdo.

I'm doing much better and walk every evening, besides my physical morning job of cleaning houses. I am able to socialize and do most everything that I want to do but I do feel that I sometimes have to pick and choose what I do (if I'm going to go out for a beer with a friend, then I need to eat a balanced meal and get a good night's sleep; if I'm going to go shopping all day, I need to clear my evening schedule so I can rest). I just don't have the energy I once had.

This rhabdo is tough stuff to put behind us and there isn't much information about it. This chat site has been a lifesaver for me because at times I felt I was going crazy with these odd feelings, and then I'd read that others were experiencing the same sensations, and that helped to calm me and keep me from being even more anxious. I appreciate everyone who posts and I hope my postings have helped others.

Please let us know how you're doing jwcwisc!

I'm in my 3rd week post-Rhabdo and have been so frustrated with my recovery, feeling that I should be making more progress with stamina and walking. Thank goodness I found this forum! After reading the personal experiences of so many, I no longer feel like I'm going nuts or being a hypochrondriac (sp?). I was misdiagnosed as having PAD less than 3 weeks before I ended up in the ER with cpk level of 27,000 which elevated to 57,000 before finally lowering. Last week's bloodwork: cpk 321 and creatinine 1.22. Thank you so much to everyone for helping me feel a little more sane!

It's been 3 yrs for me since my last bout with Rhdab and for 2 wks now, I been getting the muscle cramps like crazy. Just taking a sip of a drink causes my arm and or neck to spasm.

I don't excerise and decided to get on the exercise bike and not even 2 mins into it my legs were pounding and started to spasm. See I also have Fibro (SO THE DR'S SAY) and it make's me hard to do things. I spend alot of time in bed sue to the fatigue and tirdness is so bad. I have had symptoms and problems that gear more toward MS,but I'm not a dr.

I worry every time I have muscle cramps because I don't want to go through that experince AGAIN.

Has anyone else been Dx with something else also later after having Rhabdo or just it?

Thanks,
Melissa
PS sorry for the misspelling didn't proof read

I am at 22 months since my last bout with rhabdo and still get tired legs. I also get a "humming" sensation in my legs but overall, my strength is back and so is my endurance. I can do so much more and I feel so much better than I did, even since last Christmas. I had several blood tests in 2010 right after I got rhabdo, then again in 2011 and this past spring 2012. Nothing odd ever shows up. My CPK remains a little higher than a "normal" person but it's not critically high (usually around 280-300) which I've read isn't unusual for someone who has suffered from rhabdo. I have a friend on this site that did find out that her thyroid was not functioning right and some of her rhabdo symptoms mirror the thryoid problems. You may want to have your thyroid checked. Mine has always been fine but it is something to consider.