Tbam, I'm with the others on keeping hydrated. It seems to improve things all the way around and alleviate the headaches. The muscle aches are sometimes better, sometimes worse, and I haven't found any way to control the intensity. I'm wondering if physical therapy would be helpful. Has anyone tried that?

I'm relieved to see that others are experiencing some level of anxiety. I thought I must have a touch of PTSD from the whole frightening experience -- the ambulance, the ER, days in the ICU when I was sure I was dying -- but if others are experiencing it, I guess the anxiety may also be rhabdo related.

I was readmitted to the hospital a few days after discharge because I had shortness of breath and woke up each time I fell asleep, terrified that I was suffocating. (It turns out that I have severe obstructive sleep apnea on top of everything else, which at least can be treated.) That has improved so much, I can't tell you what a relief that is, but I still have episodes of SOB with anxiety during the day.

I hope you'll continue to post any symptoms you have, whether you think they're caused by the rhabdo or not. It's reassuring to the rest of us to see that others are experiencing similar problems, and it's a relief for the person posting to have a place to talk about these problems. Though my family and friends are supportive, I feel like I'm whining when I talk about my illness day after day, and I'm just waiting for the inevitable eye roll. Good luck to you!

I totally agree that having a place to share our symptoms, a place to vent and a place to go where you don't feel so all alone has been wonderful. So few people have ever heard of rhabdo, let alone gotten it, that sometimes you feel very isolated. Thanks to everyone who joins us and participates on this site. You've all been a great help, especially on the days that my legs are really aching. Luckily, I'm having less of those now @ 12 months, but I still have a ways to go. Again, thanks to everyone here!

I agree hydration is key. I think that some of the anxiety comes from the unpredicatability of when you will feel well and when you will feel poorly. I'm apprehensive about leaving home and how far away I can go because I never know how I will feel. It is very reassuring to hear I am not alone and I can come to this site for support. I will certainly continue to visit. RhabdoBKJ, I'm glad to hear you have found a reason for the shortness of breath. I know, it can be a scary feeling. Thanks to everyone else for your support.

I just had a friend recommend Nopalea by TriVita, saying it has made him feel so much better. He had been feeling run down. Has anyone tried it while recovering from rhabdo? I'm reading on the internet about it and it sounds promising but was just curious if anyone's tried it.

neecee, I'm probably not the person to ask, being a born skeptic. A lot of the stuff I read sounded kind of scammy to me. However, there's great benefit in placebos. Unfortunately, I'll never benefit from placebos since I never believe anything unless you prove it to me. My loss!

I dropped a pot full of boiling water and pasta all over my kitchen and myself this evening. How long did it take you all to recover your strength? I'm getting frustrated...

I think your recovery time varies from incident to incident and person to person. I had rhabdo in 2003 and I was back to life as normal within about 6 months, although still tiring easily, I was otherwise back to normal. This time, I'm at one year and not only do I still tire easily, my strength and stamina are not what it was. I am better but I wouldn't consider myself back to 100% yet.

That's the unfortunate thing about rhabdo, no one can tell us exactly how long we'll have to deal with it, why we got it, and what side affects we will encounter. I find talking with others on here very helpful because we do seem to all experience many of the same things. Keep hydrated, take walks and try to push yourself a little bit, without overdoing it. That's what has helped me, maybe these things will help you or others? Rhabdo is a huge guessing game!

Hi! I am new here. It took me 3 weeks to find this support group...but I am glad I did.
I was admitted 3 weeks ago for rhabdomyolysis...and, you guessed it...no one knows why! My CPK was >70,000.
I am a physician and I find it very frustrating that not much is known about this disease. In fact, after I was diagnosed with breast cancer last year, I am fairly certain I have had several bouts of this over the past year and the rhabdo is the reason I have not recovered as quickly as was expected. I can tell you that my own physicians have "blown me off" and ignored/discounted my symptoms. I wonder how much damage has been done to my body in the meantime!
It is very hard to get others to understand how much the fatigue and unpredictability of this disease impacts one's life. I am sick of people acting like I am just trying to get out of work...I would love nothing more than to return to my PREVIOUS state of good health and work 20 hours a day, be supermom and superwife, and still have energy left over at the end of the day!
I have an appointment at Mayo Clinic in 4 1/2 weeks...I will let you all know if there are any other great suggestions for dealing with this and any new insight as to underlying causes.
Also...I have read every single one of the posts on here. I found them to be much more informative than any of my medical books or the internet sites!
I think the BOOK idea is wonderful.
Also, I, too, have weird symptoms...certainly the muscle spasms and fatigue, but also the headaches, short-term memory problems, "brain fog," intermittent numbness in my hands, balance problems, nausea, heartburn, and trouble swallowing. I think my nephrologist's and oncologist's suspicion is that I have some unusual underlying neuromuscular or autoimmune disorder...we will see what Mayo says.
Have a great day...and stay HYDRATED...LOL!

You really have had more than your share of medical problems. I feel so bad for you. Hopefully, you will be able to make some sense of rhabdo through this support group, then you can be the medical authority who writes the book! I'll help you, and I'm sure there are others who will, too.
--Annie K.

Welcome Brst to our little group - we are glad to be here for you and for each other! I have found sharing our stories has really helped me cope thru this puzzling condition of rhabdo. PLEASE keep us informed as to what you might learn. AKarenina and I email each other frequently and it's amazing how many of the strange symptoms and sensations we share but that none of our doctors seem to even know about. I'm at one year now, so I will be glad to answer any of your questions or take any advice that you have!! Please don't hesitate to post with any questions or concerns or if you just need to vent. If you'd like to email directly, you can reach me at: neecee5775@yahoo.com
Keep in touch and take care of yourself!

Hello all, has anyone here ever completely recovered from this back to 100%? I'm feeling better overall, however no where near back to normal. And do the twitches eventually go away? My doctor and I believe that the Wellbutrin XL I was on played a roll in this, however it took a few months to figure that out. I've noticed many others on this forum were taking various medications when affected. Just getting very frustrated.

Hello,

I am a nurse and a reporter working on an article for a national magazine. I am looking for people who have developed rhabdo from a statin. I saw people have this side effect in my nursing career, and I don't think the public is adequately informed about this disease. I am still in the research/ query stage, so I don't know where the article will end up. However, I think this is something that needs to see the light of day.

If you are interested in being a source for my story and have had rhabdo as a result of a statin, email me at pghgrrl@yahoo.com. We can set up an email, skype or phone interview from there.

Thanks!
Lynda

Hi Happydad! I had rhabdo back in 2003 and after about 6-8 months, all my aches were gone, although I did tire extremely easy for about another year or so after the aches were gone. I developed rhabdo again in September 2010, so I'm now at 13 months and this time I am still achey. My legs are the most annoying. They feel fatigued whenever I do alot or change up my schedule. I also have had stomach muscle contractions this time but those didn't develop until I felt like I was over the worst of the rhabdo, after about 8 months, but here in the last month or so, the stomach muscle sensation has disappeared. This week, the small of my back has been aching but that could be from our new mattress and not rhabdo???? It is VERY frustrating and I think each patient is probably different but I don't think it's unusual for you to still not be feeling back to 100%. I'm so ready to feel like myself again and although I'm much, much better I'm still not back to 100%. For me it's frustrating since back in 2003 I did finally get over the aches and this time I can't seem to get over this last hump. Email me anytime if you just need to vent or you have any questions, I'll help if I can. I've found chatting with people from this site has helped me: neecee5775@yahoo.com

Well, I saw my doctor last week, now two months post-rhabdo, and my complaint was continued pain and weakness in my arms and shoulders. He believes that I should have completely recovered any damaged muscle tissue by this point, and any pain I have is simply tightness because I haven't used the muscles.

Now, I can see how that might be true to an extent. I'm afraid to do many things like stretch too far or in the wrong direction or move too suddenly because I'm so afraid of the excruciating pain I know will result. The pain I feel doesn't seem like "tightness" to me, but I guess I have to go through the motions that he recommends. In this case, that's physical therapy. I think that may help, so I'm eager to give it a try. Has anyone else had PT to deal with rhabdo pain and reduced range of motion?

I've been dealing with chronic pain from gout for years, and I've been taking hydrocodone and morphine for it. My doctor has decided that now is the time to reduce my pain meds though my pain is worse than it has ever been with the rhabdo pain thrown in. This upsets me, and that makes me appear to be drug seeking. How do you all deal with the pain?

My lab results are good, numbers back to normal, so I think my kidneys are going to be fine. Yay! I still have foamy urine which I understand is a sign that protein is present, so I guess they're still struggling a bit. Does anyone else have this symptom?

I'm so glad you all are out there. The only person I can talk to about these things is my doctor, and he dismisses many of my complaints. I think it's meant to reassure, but it only frustrates me. Frustration is a recurring theme here, isn't it? Thanks for listening!

Hi RhabdoBKJ: I'm 13 months post-rhabdo and I still ache! Yes, I think part of it is because I'm scared to push myself too much so maybe my muscles aren't as strong but I do walk daily and I have a fairly physical job (I clean houses, one per day). So I think the ache is rhabdo-related one way or another..... Anyway, the first time I had rhabdo in 2003, I did P.T. and I felt better, with no aches, after about 6 months. I still would get tired easily but the aches were gone. This time, the "specialist" I saw totally disagreed with the P.T. I had seen in 2003 and said I shouldn't be doing the P.T. exercises and recommended only walking, so I followed her advice. I'm now wondering if I should have (or should begin) doing those P.T. exercises because I did get better quicker in 2003. I'd appreciate you emailing me directly and telling me what exercises the P.T. gives you to do. Here is my email: neecee5775@yahoo.com. This site is wonderful and I check it often but I've directly emailed with others and it's a little easier to share your rhabdo stories in more detail thru email. So if you have the time, I'd like to hear from you about your symptoms and progress. Thanks so much! neecee5775@yahoo.com

Hi I am new to this site but found it looking for info on my son who has cerebral palsy so I am writing on all our behalf. Jason go sick 10 years ago and was hospitalized several times over a short period of time with no doctors able to diagnose what was happening. He then had test at Great Ormond Street hospital London and finally a consultant mentioned Rhabdo! Others had no idea what he was talking about. Last year after 10 years he finally got very sick again. I mentioned Rhabdo to the doctors and now they had heard of it. It was confirmed.Our son needed dialysis he was dying. Since reading up i realize how much pain he was in and now even suspect I know what might be causing it, but only because of all you lovely people on here. Well he has gotten sick again and I feel sure this is Rhabdo again. He has a lot of pain in his legs and is so sleepy all the time. The GP has run one lot of blood tests and all come back ok except low white blood count.

Jason has athetoid cerebral palsy and he has a lot of involuntary movement especially in his legs. Sometimes they thrash about non stop. I am wondering if this sets off the Rhabdo and has always been the root cause since he first got it. When he gets stressed his body moves even more. The only way to stop this is for him to sit crossed legged in his wheelchair in a lotus position. He has arm muscles like someone who works out but he never has and cannot other than all the non stop movement.

He is in so much discomfort right now and has finally gone to sleep so I am taking the opportunity to write this message. Does anyone have a good pain killer they can advise to help with the aching painful legs? It hurts to see him like this and I so want to help him. I am trying to keep him hydrated as I really do not want him to go back into hospital, but trying to make him drink is so hard he is a very stubborn 29 year old but we love him and in some ways I am glad he has a stubborn streak! Any advise would be much appreciated.

Good luck to all of you, I can only begin to imagine what this is like.