I hope you can get some helpful advice. I know nothing about C.P. For me, when the pain was the worst, my dr. had me take a prescription dose of Ibuprofen. At night I take .5 mg of Xanex to help me get a good night's sleep and rest my muscles. Other than that, I wouldn't have any suggestions for you with your son's situation. Rhabdo is very frustrating, so I hope you can get some help. Best wishes to you.

Jusy had my first official bout with Rhabdo and wondering how long recovery takes. My case was exertional Rhabdo after returning to weight lifting. Worked out for 35-45 minutes with what I thought were good starter weights. Probably did too many reps but next morning, I have never felt pain in my arms like that. After three days, went to see doc because I read about Rhabdo (had the cola colored urine). Blood tests showed CK level was 66000 (not a typo). He waited a day and admitted me to the hospital for IV fluids. After 48 hours they let me go with CK of 33000. Muscle pain is gone but arms are still a little stiff. Wondering how long it takes to get CK back to normal and if I will be at risk of this in the future. Crazy thing about this is aside from the muscle soreness, I felt absolutely fine. Also, apparnetly kidneys did not mind all of this because creatinine levels never got above 1.2. BTW, not on any medications and did not take any drugs or suplements. Could have been a little dehydrated when I lifted but that is about all.

WOW! With a CPK level of 66,000 I can't believe they didn't admit you immediately!! As far as recovery time goes, I believe it varies from person to person and episode to episode. I had rhabdo in 2003 (for reasons unknown but possibly a combo of a virus, stress and slight dehydration). I was in the hospital for 2 days and felt horrible for the next couple of months but most the aches were gone in 6 - 8 months, although I did still tire easily for probably a year. This time when I developed rhabdo in September 2010, I was in the hospital 3 days, came home and felt awful for about 6 months and still now, after 14 months, I still tire easily and have some muscle ache in my legs, although not nearly as bad, and my stamina has greatly increased and overall I'm feeling so much better, but I would not say I'm back to 100% quite yet. The first time, my CPK level was 17,000 and this time it was 2,800 (both times much less than yours) but this time I've had a much rougher time getting over it, even though the CPK level wasn't as high. I also never had any kidney issues. Unfortunately, there is no set amount of recovery time. It varies. I kept wishing that if I just KNEW how long it would last, I could get thru it much easier because when I was at my worst, it became kind of depressing to have no idea how long it was going to linger on. But it does get better!! You have to take care of yourself. KEEP HYDRATED, do not be too sedentary but don't overdo it either. None of those pieces of advice are very specific but if you read thru hear, you'll find that's what all of us have been told and I guess until there's more research, we have to do just that. Get a good night's sleep too!! Post anytime or send me a message if you have any other questions. We're here to help each other and I have found that a great comfort. neecee5775@yahoo.com

neecee, Doc knows sitting in a hospital bed doing nothing would be harder on me than the Rhabdo :) Only one day out of the hospital and I already feel MUCH better (even if just mentally). If I could get out and run a few miles, I am sure I would be completely back to normal but doc said I had to take it easy. Only problems I have is body stiffness but I am sure that is from laying in a bed and stomach muscle soreness from going to the bathroom every 15 minutes. Spent the first day roaming the hospital but CK was not coming down so they made me stay in the bed. Only able to get up to go to the bathroom. That is when the numbers really started coming down. I will get another blood test this week and hopefully be back to whatever normal for me is. I will let the group know when I get more results. Yep, the 66K was a bit high. Doc had estimated it probably got to 100K because I did not even get checked until day three and urine was already mostly cleared up by then.

Hello everyone, I'm kinda new to the group, but definitely not new to Rhabdo. I've had it for over ten years now. Cause still unknown. BBRhabdo you are right recovery can be slow at times and the effects can sometimes linger longer than you might expect. When I first started recovering from rhabdo, I could bounce back on my feet after about a week or two as if nothing had happened but it wasn't long til recovery from rhabdo slowed down. I now find it harder to recovery. My body is sluggish, swollen from all that IV fluid intake, weak, no energy and sometimes my feet feels as if they weight 100lbs it's sometimes very difficult after recovery to go up the stairs in my house. But the best thing I found to help with recovery and rebuilding your strength is swimming or just playing around in the swimming pool. I really recommend it, it's such a relief on your muscle and you're begin to feel stronger the more you use the swimming pool.

It's been a while since I posted, but as you all know, life after rhabdo can be such a struggle!

I still don't have answers, per se, but I have an update.

I have been to Mayo twice this month and have to go back again next month. I have been very impressed, but it is a long drive and I really dislike staying in hotels for long periods of time (OK, done whining!)

I definitely have an underlying metabolic myopathy...although the neurologist haltingly informed me they may never know exactly what it is. She says it's not anything simple or easy...if it were, the 20+ vials of blood taken would have shown something. But, never fear, they drew another 11 vials for even more obscure tests; AND she says there are more to be done but they are send-outs and couldn't be drawn on a Friday.

The frustrating part? The EMG I had done in January 2011 was abnormal (even though no one told me) and apparently should have prompted a neurology referral, but no one ever followed up on it. I am seeing a surgeon in a few weeks to get the muscle biopsy done.

I have also ended up with 2 tears in my hip (which was never examined previously because all my docs just kept saying it was arthritis from my breast cancer meds), so now I have severe activity restrictions until ortho can figure out exactly what needs to be done.

Most recently my internist FINALLY has listened to me about my shortness of breath (which never went away after my rhabdo admission)....because the Mayo docs said rhabdo does NOT cause shortness of breath. I found out my chest X-ray from my rhabdo admission showed changes consistent with emphysema...but again, NO ONE told me. (I found it on my own, quite by accident, when sorting through records to take to Mayo last week.) Now I need a chest CT scan, PFTs, and possibly a heart echo/right heart catheterization. Holy cow! I have gone in several times over the last 2 months complaining about the shortness of breath and was told it was from the rhabdo, or depression, or anxiety...the same bull they have been telling me for the last 1 1/2 years! No one bothered to follow up on the chest X-ray. It is downright scary...I keep wondering what would happen if I were NOT a physician??

Anyway...I learned some interesting things from the neurologist that might help you. She said she has patients with recurrent rhabdo all the time and if it is just straightforward rhabdo, you should recover in a few weeks and be fine in between episodes...it does NOT drag on and on. If it does, then there is SOMETHING else going on.
She believes that a lot of what we all experience has more to do with an untreated or improperly treated underlying hypersensitivity syndrome. In other words, a lot of us have migraines, etc and just deal with it or have been to the doctors and they just write us off as complainers and don't get to the heart of the problem. Thus, when we get rhabdo or have another major insult (surgery, etc), our bodies go haywire and we have an exaggerated responses. So our subsequent complaints are just attributed to us complaining because the things we experience are not consistent with how we look to others and with our physical exams. It does not mean we are making it up; it means we have been or are being ignored by our treating physicians.

She said there is no reason to live your life in pain and miserable...if your doctor won't listen to you, keep looking until you find one who will. She actually told me that if my internist would not address my shortness of breath (and a couple other things they found), then I should switch doctors. You don't hear that very often in the medical community!

I know this is long, but I thought this info was worth sharing. I will post more once I see the Mayo docs again. She wants to wait till the muscle biopsy is done before trying any meds, but at least she gave me some hope. She really thinks that if she can find a preventative migraine med that works for me, I will not be so miserable and can function fairly normally!

Best Wishes To All!

Oh, wanted to clarify about the emphysema...I have never smoked nor have I ever even touched a cigarette! However, the orthopedist thinks I may have a seronegative autoimmune/rheumatologic problem because several of my joints had extra fluid as shown on the MRI. Apparently THAT is what made my internist perk up and listen...I have never seen her work so fast to get things done and ordered! Some autoimmune disorders can apparently cause pulmonary hypertension (a BAD thing) and right sided heart failure, so I guess if I have to pick a cause for the shortness of breath, I would prefer ANXIETY as the cause, but definitely would take emphysema over pulmonary hypertension!

Thank you for sharing your story. I'm a little puzzled that you were told that rhabdo shouldn't linger on because most all of us on this site have had a different experience and have found that it DOES linger on, although the length of time seems to vary from one individual to another. I also saw a "specialist" at the University of Kansas and she also told me that I could undergo many tests and muscle biopsies but still may never learn if I have an underlying issue causing rhabdo or if I just succomb to it for unknown reasons. I guess I figure if I learn that I have something underlying, there still isn't anything to do for it, so I've opted not to take a trip to TX for testing that seems to me wouldn't really give me any answers.

I'm now at 14 months and doing much better but I can't say I'm back to 100%. My legs sometimes feel like I'm lugging around 100 lb. weights on them. I also tire easily, although my stamina has greatly increased.

We went to the Caribbean and I agree floating in the water helped my muscles totally relax as there were no pressure points on them.

Anxiety and shortness of breath are things I've dealt with too while recovering from rhabdo but those haven't been major problems for me. Mostly the tired, heavy legs have been (and still are) my biggest complaint.

If you learn of anything else that we can do to regain strength in our affected muscles, please let us know, as well as giving us a report about your next visit to Mayo. Thanks so much and HAPPY THANKSGIVING to all!

I am to was bitten by Rhabdo. Mine was from lifting and over exerting, Long story short I have been VERY Physical my whole life, and I worked at a VERY Physically demanding j.ob.
I pushed it way to hard on a workout and then did some climbing hiking with rhabdo . I think I had rhabdo for a day two and pushed it very hard on the third day making things worse.
Not very smart I know!
I spent 6 days in the hospital my CPK went up to around 40000, I was on a sodium Bicarb drip for the whole stay. They let me out with CPK at 10000.
A week or so after leaving the hospital I began feeling pretty bad, had a few scary fainting episodes. At one point I honestly thought I was dying feeling extremely faint, I went to the OR in a different city and they couldnt find anything wrong with me? and my CPK levels were back to normal.
Since this happened August of 2010 I have not been the same. And it has been very tough to be inactive.
My question is does anyone else feel any of these symptoms??
Bizarre Headaches
Occasional Brain fog
Fatigue
Light colored stools
bizarre heart palpitations

and other symptoms but the worst in the nuero and headaches
I have seen other docs, some say CFS, Maybe Lyme??
The more I read here the more I am thinking its all from the rhabdo??
Its been a very tough road with very few answers, any help suggestions on Doctors or anything would be greatly appreciated.
Sorry for the long story
I hope everyone has a great Xmas and is on the road to full recovery

Pardon my Grammatical mistakes. I should have proof read it before posting :)

Hi! I came down with rhabdo in September 2010, so I can totally relate to what you're saying! I still have "humming" in my legs, fatigued feeling legs and "heavy" legs. I tire easily. It's been 15 months and I'm not back to 100%. Although I'm much better and don't tire as easily and the muscle pain is gone, the other symptoms still linger on. My legs are definitely the biggest problem with them feeling fatigued and heavy at the end of a day. After doing as much research as is possible on the net and talking to doctors (who don't know as much as all of us on this site) I think that we are "ok" and shouldn't be overly concerned that after 15 or 16 months, we still are feelings side effects. It gets depressing and then causes me anxiety that I'm still suffering with these feelings in my body that I didn't have prior to rhabdo but all in all, I think it's quite common amongst all of us to not bounce back quickly. I'm trying to be positive about these feelings rather than thinking there's something more wrong with me because alot of times I can get into a "funk" and think "why am I not better"???? But I truly believe, after reading all the posts, that UNFORTUNATELY it just takes alot of time to get past the post-rhabdo affects. I had rhabdo in 2003 and bounced back in about 8 months, but that was 8-9 years ago now, so with time & age, I don't seem to be getting over it as quickly. It upsets me but then I read posts by others, like you, and think that it just is what it is and it's going to take us time. Thanks for posting. You don't know how much good you are doing for others to learn that they are not alone or unique in their symptoms. I hate that you are still suffering but it's nice to know that my symptoms aren't unique. Please post anytime or email me directly. It helps to know that you are not alone with this!! neecee5775@yahoo.com .... and MERRY CHRISTMAS TO ALL. Let's all hope that 2012 finds us with less post-rhabdo complaints.

I just returned from 4 days in the French Quarter (New Orleans). If you've ever been there, you know there's ALOT of walking, more than I've done in the last 16 months since I developed rhabdo. It was a challenging vaca for me because with so much walking, my legs would get very fatigued. Luckily, I had no actual muscle pain, just fatigued legs and my stamina is not what it was before rhabdo. Maybe I need to start exercising more to get back in shape but I'm always so scared of overdoing it & having a relapse. I think we all seem to share that fear. I'm home and I'm tired but I don't feel completely drained. I do think I need to be in better shape, though, before I take another walking vaca. It's hard to believe that after 16 months, I'm still run down from rhabdo. This stuff is so discouraging! But overall, we had a nice time and we enjoyed ourselves. I just need to keep putting one foot in front of the other!

I was released from the hospital 1 week ago today from a 8 day hospital stay from rhabdo. i was admitted 6 days after the exercise class that put me in there. i diagnosed myself via internet and knew i better get checked. My cpk levels were 325,000 (highest the Dr's there had ever seen) when i arrived and were 1,800 upon release. I have to follow up with my primary Dr. this week. The hospital Dr said my liver and kidneys had no permanent damage. But i forgot to ask about my muscles. Anyway my legs are very weak and wobbly and was wondering if that is normal? from reading other posts i am guessing it is and if those are my only symptoms right now i am lucky...

Although I've had normal blood test results for 8 months after being diagnosed with rhabdo, I still have muscle problems. Mostly they'll ache when I overdo it or am tired. My legs ache the most but my upper arms also give me problems. Most days, though, I'm OK now, and I know there are others on this site who have taken much longer to get over the after effects.

If you've read the entries I've made on this site, then you'll know I've had rhabdo in 2003 and then again in 2010. In 2003, my CPK level was back to normal within a month but my legs ached and were very weak for a couple of months, then I slowly began to regain strength and felt back to normal within about 6 months, although I would tire easily for the next year. This time, however, even though my CPK level was back to normal within a month, my legs are still a problem. If I overdo it, or spend too much time on my legs, they will feel heavy and fatigued. I've not had anymore actual muscle pain, thank goodness, but my legs do have these annoying sensations that I just can't seem to get over. I feel better overall but it took a good 6 months before I felt like I was improving. Most days now (it's been 17 months) I have a good energy level and can do most things but doing alot of walking last week on vacation was somewhat challenging as, like I previously mentioned, if I overdo it my legs will fatigue. This can be a frustrating thing to get thru but eventually we do all feel better. Post anytime, we are all here to help one another and this site has helped me alot not to feel so all alone because I've found that my symptoms aren't unique to me but we all seem to share alot of the same post-rhabdo affects.