Wow! I can't believe you were sent home with a CPK level that high. The first time I had rhabdo, 8 years ago, I was admitted with a level of 17,000. This time I knew what was happening & got to the hospital sooner but still was admitted with a level of 2,800 where I stayed for 4 days on IV's. They do say that alcohol can affect you and help to bring on rhabdo. In my case, the first time I had gone for a brisk walk (nothing super-fast, just about 3 miles in 45 min.) and came home & had a beer. They speculated that might've played a part in it but they also thought other things must've been going on in my body (maybe a virus, stress, slight dehydration) and then the beer maybe put me over the edge. I think it's a guessing game but do be careful and keep hydrating. After 8 years, I got rhabdo for the second time and I hope the last. I had slipped and wasn't drinking quite as much H20 as I had been in previous years, although I didn't think I had cut back that much, but I guess if you're prone to rhabdo, drinking LOTS & LOTS of water is a good prevention.

I had an extremely busy weekend with traveling 3 hours one-way to a funeral then coming home the next day for company at our house the remainder of the weekend. Then yesterday, which was extremely hot in the northeast, I went outside to clean our front porch. Shorty afterwards, my legs started in with aching and weakness. I laid down for the rest of the day. Now it is Tuesday, and I'm still not feeling great. I guess this is what you all mean about having bad days among the good during recovery.

We are in the midst of a heatwave here in Kansas City, Missouri and I tire very easily still when I'm in the heat for very long watering my flower gardens. This stupid rhabdo just takes time and ALOT of patience to get through. At 10 months, I've still not had one full day yet where I haven't thought about rhabdo in one way or another (feeling some leg pain, or worrying about whether or not I've drank enough H20 by the end of the day, or worrying that maybe I've planned to many activities in a particular week). I worry alot about getting full-blown rhabdo again since I'm still fighting the after affects but I am getting better even though there is still room for improvement. Like I said, this stuff just takes alot of time to get over! uggggg!!!!

Well, it's Wednesday, 2 days since my last post. I've been careful to hydrate, have slept quite a bit, and kept my activity level low, and I woke up feeling good. I hope this continues on a positive track. A difficult aspect of rhabdo recovery is never being quite sure of one's limits.
This web site is superb, but I still think there ought to be a rhabdo recovery book. That would be something I could take to my doctor to verify that I'm not the only person with these after effects.

I find that to be one of the hardest parts of getting past rhabdo. They tell you not to be too sedentary BUT you know if you overdo it, you pay the next few days by having all sorts of leg aches (and then sometimes anxiety or sadness from thinking "why aren't I getting better"??) It's a tough balance, but I find reading other's stories on this chat site has helped me alot to not feel so all alone. Thanks for posting and please keep in touch!

I'm repeating something Alfooa wrote in this blog in October 2010:
"Think positive, move, rest, keep hydrated and be patient!!"
I keep re-reading everyone's posts just to reassure myself that I'm not experiencing anything atypical during recovery. Thanks to everyone who participates in this venture.

I do the same, re-reading everyone's posts because sometimes I worry that there must be something more wrong with me since it's been 10 months and I'm still not back to 100%. But then I read what other's are experiencing and realize, this just takes time! I just got back from a 15 minute walk thru the neighborhood. With the heatwave, I've not been able to walk for several days. It's already hot @ 9:30 AM, so of course, I'm worried maybe I overdid it and shouldn't have been out in the heat walking. But I do know that at some point you have to push yourself. As I've said before, it's so hard to find the right balance of not overdoing it but not becoming too sedentary. I also appreciate the posts that are written on this site so I don't feel so all alone. Best wishes to all and Let's all keep in touch!

It has been 3 months today since I came down with rhabdo. On July 1, my cardiologist put me back on a very low dose (10 mg) of a statin drug to see how I would tolerate it. I've had achy leg muscles and fatigue now and then, but I was assured this was still an aftereffect of the rhabdo. Yesterday I had followup lab tests. My CK is 75!!! But the even better news is that, while being on such a low dose of statin, my HDL is 57 (normal range 35-65), my LDL is 24 (normal range 0-130), my triglycerides are 119 (normal range 0-200), and my total cholesterol is 185--higher than it has been on 80 mg of simvastatin but still not bad. I'm praying that I can keep my cholesterol levels in an acceptable range without increasing the dosage of statins. For the last month I have been eating high fiber foods, per advice from the Harvard Medical Letter. I have some form of oat bran every morning along with prunes or apricots (or sometimes raisins). I also take Metamucil 3 times a day; this, too, per Harvard. All this is to lower my LDL's without medication. Maybe it is working! Just thought I'd let you know in case others of you are struggling with staying off statins so you can avoid another attack of rhabdo.

I was digonsed with Rhabdo June 12th caused muscle dystrophy heart attack and complete renal failure! Have been in excellent health for 52 years..then this am getting better heart is okay am on dialysis,for how long? not known...but still able to awaken in the morning and watch the "sun" come up..a big thing for me anyhow I was a get it done kinda guy..and this has totally sapped me. But am getting back into the swing of things just takes time..so hang in there it DOES get better!

Yes it does get better. I'm at 11 months and my legs still tire easily but I do feel better overall and have much more stamina. I had rhabdo 8 years ago and bounced back much more quickly than I have this time, but I am 8 years older, so that probably has something to do with it. Lots of luck to you!

Obxyew, you have really had an extremely tough time of it with rhabdo. I admire your positive attitude despite everything you have been through. I have found this portion of Daily Strength to be my calm in the storm because the people who respond here do make it out, and they've made a positive difference in my recovery process. I think most of us agree that we have to be patient because rhabdo takes its own sweet time with the after effects. Long after blood tests are normal, there is the fatigue, aching legs, and other recovery quirks. But we are here to support each other. Good luck to you.

Had Rhabdo middle of June also complete Renal failure, what with dialysis and the Rhabo recovery? Make me really tired,just have to have faith in your body,take it one day at a time and do little things to get your strength back,thats what I have been doing. Hang in there! it only gets better!

It has been 10 weeks that I have been considered "post rhabdo" but I, like so many of you, still have good days and bad days. I moved some heavy furniture by myself a week ago and have had bicept pain in one arm ever since. Do you think the pain is from moving something heavy? If so, why is it taking such a long time for the muscle to recover? Or do you think I should contact my doctor to see if I should have a blood test? I hate to seem like a hypochondriac, but I'm back to being worried again.

Akarenina, Talk to your doctor about any and all concerns. You are not being a hypochondriac. The doctors truly don't know enough about this disease/syndrome/whatever they want to term it. I am 1 year 2 months post rhabdo. They don't know for sure what caused it as I was not taking any drugs and I was fit. My legs still cramp and will try to go out. They have no idea. I will say that taking CQ10 (an enzyme) it has helped. It also helps with my energy level.

I have other things that have happened since then and I talk to my gp (she is a blessing) constantly about any and all health. They know that if I say I am hurting or feel off they know something is amiss.

I wish all good luck and prayers. I wish more doctors would see that this is something important to their patients and not brush them off so much.

I'm now at 11 months and still have achey legs. AK, It wouldn't hurt to go have your blood drawn just to check your CPK level, even if it's just for your peace of mind. Like Dark Angel, I came down with rhabdo for no specific reason so I'm always hyper-aware of any unusual feelings in my legs or arms. Even if I know I've done something strenuous, I worry when I have an ache that lasts a couple days. Most likely, you just overdid it, but it's easy enough to get your CPK level checked just to be sure. I know one time I had mine checked and I sure it was elevated! When I found out that it was in normal range, I instantly felt better! This rhabdo makes all of us a little on edge because none of us want it to return!

I hope everyone is doing well. Let's keep this site going to share our experiences since the doctors are not very knowledgeable about rhabdo.