I'm 60. I had a rabdo meltdown on 9/2/10. I fell to the floor at home, alone and layed there for 6 hours before I could manage, in terrible pain, to get to the phone and dial 911. The ER doc knew it was Rabdo right away. He said it was alarming how many statin takers were coming in with this problem. After 7 days in ICU I was transfered to a SNF to start rehab. After a week they sent me home with a script for outpatient PT and OT. After 4 months of grueling therapy I'm about 90% back. My main issue now is the dread of a recurrance. It's a fine line between too little and too much exercise. I find that working out in the pool to be the best. Thank you all for sharing your experiences.

What was your CPK level when you were admitted to the hospital? It sounds like you were hit hard with this. All of us here know first-hand how awful rhabdomyolysis can be, so post any questions any time, we are all here to help one another. I've gotten great comfort from hearing from people on this site when I've been upset and just needed to talk about this experience.

I hadn't checked this site for a few weeks but got back on today and was just curious how everyone is doing. I'm approaching 7 months and doing better but I cannot say I'm anywhere close to 100% yet. We took a 4-day cruise this past weekend and I did pretty well, but I didn't do much other than alot of lounge chair resting and laying in a hammock at the beach. The relaxation and sun were wonderful, but once we got back to the airport and had the walk and the carrying of the luggage & all the stress that goes along with traveling, I was beat & my legs were achey, so I still have a ways to go. I'm suppose to FINALLY see the nuerologist in May so I'll let everyone know how that goes. I've gotten so much support from your emails and postings that I want everyone to know how much I appreicate your words. I'd love to hear how everyone is doing. I'm wishing the best for all of us!! xooxxo Denise xooxox

I developed rhabdo while under general anesthesia on the operating table undergoing an operation for an incarcerated hernia. (I had not been able to keep anything down for two days). I didnt wake up for 7 days. I was on life support for 1 week and dialysis for almost 2 weeks. I was then in the physical rehab unit for 4 weeks. I was discharged in August this past year. I am still recovering. I can walk to the store and back (about a mile) but if I do anything more than that, such as a trip to Walmart or babysit my 9 month old grandson for a day, I am in bed the entire next day.

I am glad to see I am not the only one. Everyone thinks I am well because I look the same but I am not the same and I dont know if I ever will be again.

I am at 7 months and I understand completely that it gets discouraging not to have the energy you once had. I like checking this site to try and compare my progress with others. I have been feeling better in the last couple of weeks but I feel like it is such baby steps in trying to get over this as the recovery is slow going. There have been a couple days where rhabdo isn't the only thing on my mind, then I'll overdo it by walking around a big box store or staying up a bit later than I should and then I feel fatigued and achey. This rhabdo is not easy to get over but eventually, one day, it will be behind you but somedays it feels as though that day is never going to happen. Remember to stay hydrated, rest and try to be patient (I know, I get tired of this advice) but it really is the only choice we have as there is no "magic" pill to get over this stuff!

Hello Everyone! I am FINALLY (after 8 months) scheduled to see a nuerologist next week. She suggested that while I'm there she should perform an EMG but I've read on the internet that it can cause your CPK level to rise and that you may be sore for several days after. We are leaving on vacation a couple days after I see the dr. and am concerned I'll be achey & fighting a high CPK level again. Has anyone had this EMG done and what is it like?

I am so glad to have found this support group. This is the first time I've had rhabdo, and it's a scary thing. All your comments have made me see I will get through this. I'm surprised at how long it can take to get back to "normal." My doctor has not said anything yet about that. Do you all think I will be able to go on vacation in a month with my husband and grandchildren? Or might I get too worn out? I've had rhabdo for 2 weeks.

AKarenina,

Keep tabs on what is making you tired and sore. Drink lots of fluids and when you start to feel tired doing something stop and rest.

I have started taking a multivitamin and CQ10. So far it is helping me more than a lot of things have. I am finally back to full time work after 11 months of being down. It can take a very long time and doctors don't know anything of why or what causes the long recoup in some of us.

Good luck!

AKaren: Email me anytime and I'll discuss with you rhabdo. I find it's very helpful to hear other people's experiences and progress. This is the 2nd time I've had rhabdo. This time, it came on in Sept. 2010. My husband and I just got back from vacation on Isla Mujeres so I was at 8 months and still tire VERY easily. We didn't do alot of walking around the town because the heat combined with my fatique really limited how far I could walk. I would love to find something to do to get my leg strength back because that is what is really holding me back at this time. Walking very far (like thru the airport) was quite challenging. For me, I would not have been able to go away on a vacation after the first 2-4 months and I did have to sacrifice a few things even now at 8 months but everyone is different. Like I said, email me or reply to this and I'll be glad to discuss rhabdo with you further. neecee5775@yahoo.com

Hello I have had Rhabo and mine wasn't because of exercise nor drugs, I was admitted like most of you w/ high CPK and lots of other test came back adnormal. I have no idea how I got it, and I haven't been the same since thsi happened, and it's been little over 2 yrs. This has been on my mind for quit sometime because I dont have a clue how I got it and dr's never mentioned how I got it either. I'am seeing a knew neuro now and she seems to think I have something called DYSTONIA and beofre last wk, I never heard of it. I hope I dont have this, but we shall see. I have to have a muscle test done, I guess its called a EMG,I think and I sure do hope it doesn't hurt because I have enough pain to deal w/ from day to day.
Anyway, I always wondered if you could get Rhabdo again, once you had it, and it seems by what I read, you can and that in plain english SUCKS because I dont want it again. Well good luck to all of you, I noticed there aren't very many of us in the group, so it must not be very popular, but I do wish to and hope we can keep the group going. Thank You

This is my second bout with rhabdo, which started 8 months ago in September. I also had it 8 years ago. My family doctor and a nuerosurgeon I saw both have no idea why I've gotten it but they believe it is probably a combo of factors (a little stress, a little exercising, a little virus at the time) and they seem to think all these little annoyances combined to wear down my body and cause the rhabdo. I've read that once you've had rhabdo, it is easier for it to return, which is such an awful thought!! I really like this site to read other's stories and their progress. I feel like I should be feeling much better by now, and overall I do feel better, but I've had a really bad week and ached and felt fatiqued all week long. Does this seem normal to everyone that I'm still getting tired and achey at 8 months?

FibroGalNTx and everyone in our little group - I started this "forum/group" in January 2010 hoping to seek knowledge and support. EVERYONE has been terrific sharing their experiences and positive encouragements and energy with each other. The key to a successful comeback is remaining open to the new path life has given you. Each person's view of success varies - but clearly our experiences, when used as a learning tool, enhance our lives. Let's all keep in touch by writing about our challenges, successes, and positive reinforcement to our peers - YOU ARE ALL THE BEST!!

Thank You BBRhabdo and will do. I wanted to add I read an article that it can also be inheriated,anyone know of this to be true? If it true, this maybe be why we get it over and over.Something to think about and pass it on to the experts and see if it is or not. Hugss to all of you!!!!!!

I've not heard of Rhabdo as an inherited "predisposition" or "condition" - I'll ask people here on my end. Now that you've mentioned that, I will keep a close on eye on my children, plenty of fluids while exercising, playing sports, running around the neighborhood, etc. Thanks for the insight!! Smile!