Hello Rhabdo and Neecee, Sorry I haven't been around much. I moved a couple months ago and wanted to catch up.

Rhabdo - a lot of on here are suffering right along with you. I know the hardship of the dizziness, confusion, speech problems when rhabdo hits. Since I have moved to Colorado (for a job actually), I have noticed that if I walk to far or start to have a pain in my thigh (location of my rhabdo) I do get some confusion. I don't know if it is the extra vitamin D that I am getting here, but the pain and symptoms don't last long. If you are okay with it, I would love to send you information to my neurologist in Washington state. My neurologist believes my rhabdo is from a mitochondrial disease. With the expense and the work it would take to determine exactly what it is, we did not proceed further.

Hello Neecee!
I am doing better here in Colorado. I actually came to find out that over the last 6 months I have lost a total of 30 lbs since being laid off. It is great! I am walking every day now with my dog. I can go some days up to 2 miles but my leg will give a little pain. When I do the inventory company work, I have to be careful what I do with my leg. The other night was bad, actually felt like the muscle was trying to tear again (that sucked). Overall I am doing better, less mind fog and confusion. I do still get the occasional confusion and word issues.

I hope everyone on here is getting better (some slower than others). I know if you can keep a positive attitude, it will help! I have proven that! The CoQ10 is a great thing and depending on the reason for your rhabdo it does seem to help. There is different levels you can take - start small and increase until you find something that works. It won't work for everyone. As Neecee has stated keep hydrated - it helps! I know this disease/condition sucks and can be extremely scary! I wish everyone good luck!

So good to hear from you Dark Angel. I was just wondering about you this week. You know, I've never had fogginess or confusion issues, but I still occasionally get the tight muscle feeling in my stomach (like I've been doing crunches, which of course I don't do!) But that doesn't happen very often but it's just another one of the strange side affects that we all have seemed to suffer thru besides the main concerns of our leg or arm muscles. Like you, I walk every evening and I walk longer & further each week. I can still feel it in my thighs when I'm walking but it goes away once I get home and sit down. Luckily, no muscle issues while in a resting position, otherwise I'd be scared to death that rhabdo was returning full blown! I know we all worry about that!!

The nuerologist I saw said the same thing; I could fly to TX and undergo extensive testing, to maybe find out that YES, I had rhabdo but NO they had no idea why, so I did not pursue it. I wasn't very impressed with the nuerologist I saw at the University of Kansas. I actually had learned more on this site and thru my own experiences. My family practitioner seemed to have as much knowledge as the so-called "specialist" but I think all of us have more useful information than any of the doctors!! Thanks everyone for posting your experiences in dealing with rhabdo!!

And thanks for posting Angel, it was good to hear from you....let's all keep in touch.....sharing our stories is such good therapy! xoxoxo

It has been 10 months since my bloodwork came back normal, but as most of you indicate, that does not mean the rhabdo symptoms go away. Last week I walked at 3 mph on my treadmill, something I do most days. When I finished, my legs felt strange, then my calves felt tight. This lasted for a few days. I checked in with my cardiologist and my CK was up to 266, certainly not high like those of you who have been hospitalized, but not normal either. My doctor pulled me off the low-dose (10 mg) statin for a month to see if my CK comes down. This is all very nerve-racking.

Don't fret over the CPK level in the 260 range. From everything I've read, us "rhabdo folk" may always carry a higher CPK level. It is nerve wracking though!!

It seems that the odd symptoms we developed during our full-blown bouts of rhabdo are quite stubborn and do not seem to go away in a very timely fashion. I know I'm much, much better but I'm still bothered with legs that feel tired, achey and tight from time to time but at least I don't have any actual muscle pain, which is a strong indicator that the rhabdo is coming back.

Take it easy for a few days. Get on the t.mill and walk but for a few days slow down the pace and shorten the length of time you walk. I don't think you need to worry too much about the 260 CPK level, just pay attention to your body to see if other symptoms develop, but I think you'll be fine! :)

Thanks for your response, Neecee. This is the greatest website. I still wish someone would decide to write a book using our collective experiences. I would go on a mission to make sure there's a copy in doctors' offices.

Hi Dark Angel, Sorry I haven't been on lately. I've been having flare up after flare up even with the simple activities. Last week I was actually starting to have some relief..then I simply mowed the lawn...and instant dizzyness, exhaustion. I felt like I had run a marathon. I've seen 5 doctors since I've last been on. Only one had heard of the disease...the others had no idea. I had started exercising for a week doing weight training and a slow pace on treadmill. I felt great, then I went outside and mowed the lawn it was 90 degrees out >.

It seem heat makes matters worse. Another interesting finding of my blood work is that my red blood cells are constantly dilated which is not allowing them to get enough oxygen. The doctor said my blood is running to "thick" which may account for the dizzyness. I did some research and found that the rhabdo can be associated with a specific muscle. I know mine begins in my calves, Dark mentioned your quad? Can anyone else Identify the inital pain? I live in Colorado as well. Did you have dizzy spells before you moved here Dark angel? My doctor wants to send me to a rheumatologist at the Colorado University rheumatology clinc. I haven't decided on that yet as I am already over my head in hospital bills. A mitochondrial disease or myopathy I have been tested for. They didn't believe that I had mcardles or a phosphate problem because those are "typically" genetic disease. I've talked to a few friends and told them about my symptoms. Alot of them said a family member has experienced a similar condition and were diagnosed with rhuemtoid arthertis which does run in my famly. Rhemtoid artheritis is a autoimmune disease as you may know, I wonder if the same drug would help rhabdo? It seems as though we may be the only ones that can help US. I've almost lost my job cause of my poor performance.. Should I put in for ADA? have any of the rest of you done this?

Hi Rhabdo--With my two full-blown bouts of rhabdo, I felt it coming on in my calves. I felt like I had over-exercised but unlike regular muscle ache from working out, it didn't go away after a couple of days.

I've been battling a terrible cold this week and I'm worried like crazy that the stress on my body from this cold will bring on another bout of rhabdo. I did have my CPK level checked this week and it was only 250, which I feel is definitely in the normal range for me, since I've had full-blown rhabdo twice but I'm still worried about this cold and how it might affect my rhabdo.

I've always been a sun and heat worshiper! The hotter the better but after this last bout of rhabdo, I have noticed that the heat is harder on me than previously.

I agree, all of us in this discussion group seem to be our best resources. Let's all keep posting our experiences, symptoms, concerns, etc., so we can continue to help one another not feel so isolated. The doctors really don't know how we're feeling.

My muscle aches began in my hamstrings then progressed to the sides of my calves. Outside heat became very difficult for me to tolerate unless I was constantly drinking water. I think getting even a little dehydrated is a huge issue for us all with rhabdomyolysis.

Neecee and Karinina, has your doctor(s) told you this was a life long disease? I've had one doctor tell me it was another said it wasn't. Its doesn't matter how much water I drink after a certain amount of time in the sun, it starts all over again., I've had 4 flare ups in the past two months.. the most recent was kicked off after doing simple yard work.

My cardiologist said I would be OK but after affects could last for 4 months after my blood tests were normal. Although I felt a lot better after 1 month, I still have occasional aching legs and fatigue 11 months later. And 2 weeks ago my CK test was 266. I had it checked because my legs ached more than usual. So I don't know what to tell you. I don't think doctors know for sure. This site is so helpful--better than a doctor.

My CPK has been in the "normal" range since shortly after getting out of the hospital in September 2010 but the side affects still exist. I tire easier than I did previous to 2010 and my legs will feel tired and fatigued quite often if I push myself or change my schedule from my normal routine. A tightness in my legs and a humming sensation in my legs still exist also if I've done more than normal. Sometimes my legs bother me and I have no idea why because I've not really done anything different to aggravate them.

My doctor says that quite often patients will develop rhabdo and once they're over it, that's that... but he also says that there are rhabdo patients that have reoccurrences many times after their initial bout. AGAIN, there's still alot of mystery surrounding rhabdo and I'm so glad to have found this site to be able to ask questions and share experiences.

Those who are having symptoms months or years after having rhabdo and having your CK levels checked, why do you assume your symptoms are rhabdo related? When I get tired or my legs ate sore I figure it's because I'm not getting enough sleep or I did too many squats the day before. Maybe you're looking for rhabdo when it's really not.

Motraveler, my leg aches happen for no apparent reason and the sensation is not the same as a pulled muscle. My legs also get a humming sensation which Neecee discussed in her recent post. When I have aching legs accompanied by fatigue I take it easy until the aching goes away. I also increase my water intake because keeping the kidneys flushed is important.

Mo I've been lifting competitively for 10 years. Sleep has never affected "how sore " I get. The exhaustion the pain us much different. I never used to get dizzy after working out. Lactic acid is much different then the feeling of your muscles eating themselves. Your lucky if you have had no relapse as I went 7 months with out a relapse.