My family doctor and the nuerologist I saw both told me it can be hereditary. The nuerologist said that to actually learn if you have it due to heredity would be to undergo a $20,000.00 test at a facility in Texas. At that point, if it was positive that it was inherited, there wouldn't be anything different to do to get over it or prevent it than what we already do (i.e. don't over-exercise, drink plenty of liquids, don't get dehydrated, etc.etc.) I was doing better but I'm very discouraged because since returning from vacation, I feel like I've taken a step backwards. My legs ache all the time again and I'm feeling fatique again. I'm so tired of suffering everytime I do anything the least bit out of the ordinary. When I had this 8 years ago, it didn't take me this long to get over. I'm really down in the dumps today.

I haven't been feeling very good the past few days and I've noticed that my stomach muscles are kinda "twitching" has anyone had this sensation? I haven't had my CPK level checked lately, maybe I should go have my blood drawn. My muscles don't ache but I'm feeling awfully tired and the stomach muscles twitching is something new that I haven't experienced before. Any thoughts?

My enzyme levels are now normal. My cardiologist said any problems I'm having now are after effects of the rhabdo. We went away this past weekend and I was fine while we were gone, although I had to take a long nap one day. Now that I'm home, I'm very tired. Also, does anyone get cold when they are fatigued? I've noticed that has been happening to me, so I know it is a sign I need to lie down and take it easy.

My CPK is "normal" now at 169, which is good news! But I've had a rough week and felt awfully achey and fatigued. To answer your question, I never have a sensation of feeling cold but I know that this winter, it felt really good to take my electric afghan and wrap it tightly around my legs and set it on high. The heat seemed to really help the aches and tightness in my legs.

Akarenina,

I get very cold when I past a tired state to a fatigued state. I can't get warm unless I fall asleep and wake up, normally 2-3 hours later. It really sucks.

Neecee, twitching feeling. I have had that since the rhabdo last year. Doctors of course say they don't know. I try to change a feeling somewhere else in my body or just wait it out. I actually get twitching-nerve and muscle-around my eyes and in my face still. It is exteremely annoying.

I hope everyone starts and/or continues to get better. I would love to meet a doctor that took this serious enough to do some research.

Hugs to all!

I am really glad this group is here. I developed Rhabdo after a fall in my home. I went back to bed after the fall and many hours later when I awoke I couldn't use my right side. My hand was numb I had weird bruising/bleeding under the skin on my neck and my hip hurt so badly I thought it was broken. After many hours in the ED and almost being sent home a Tech innocently suggested I collect a urine sample just in case. The urine was brown like coke. I all the sudden was treated with much more seriousness. 1 day in ICU and 4 more days in the hospital for IV hydration. My initial CPK was >22,000 . I have been out of the hospital for 5 days and have incredible pain. They said I had some compartment syndrome and my thigh/buttocks on the right and my shoulder and arm swell as the day goes on. I can hardly dress myself and going up stairs is very difficult. I slept almost all day yesterday and was concerned until I read the postings on this group. I guess I could be in for a long haul...my thoughts and prayers to anyone experiencing this. I am grateful I was't sent home from the hospital to get sicker before being treated.

For me, rhabdo recovery is like a yo-yo. I'll have a day or part of a day when I feel great, then without any warning I'll be fatigued or my legs will be aching, then all of a sudden I'll feel almost normal again. For my heart problem, I'm supposed to walk daily, but I haven't been able to, which makes me worried about my heart. What kind of exercising, if any, can rhabdo-recovering people do? Someone in an earlier post mentioned swimming, but I don't have access to a pool or lake. A friend suggested Pilates. Any thoughts?

I think the exercising is like everything else with rhabdo, sort of a guessing game. My family doctor said do stretching exercising (squats, lunges, stretching out your calves on a staircase) but then the nuerologist said NOT to stretch and only walk on a treadmill. Whenever I try the treadmill, I ache badly for days, so I don't even attempt that anymore. For me, walking around my neighborhood for brief periods of time seem the best and despite what the nuerologist said, I find that some stretching seems to help also. Again, we're all left guessing about our own treatment.

I'm exactly the same way with the aching and fatigue. All of a sudden I'll have a really bad day (or 2 or 3 in a row) where I get so fatigued and so sore that I'm not only achey & tired but very depressed. THEN all of a sudden, I feel almost like myself again. This has been a good week with very little leg pain (although I do still tire easily). Last week was awful, I hurt constantly. So, after reading everyone's posts, I believe this is "normal" for all of us to have good and bad days until we finally get past rhabdo, which also varies from person to person. I'm at 9 months now and I am so ready to be 100% over this but I know I'm not there yet.

I appreciate everyone's postings, it helps me feel not so all alone with this rhabdo that so few know about.
Here's my email if anyone wants to communicate one-on-one about all this: neecee5775@yahoo.com

Well, i went to the hospital on may 14th 2011 because i had this werid attack... mmy heart was racing and my head was poundng like ive never felt before. I was so scared i dialed 911. They ran some blood tests on me and told me i had this Rhabdo thing, i was so scared because i had no idea what it was. I was hopitalized for 5 days..docs just gave me an IV and told me to drink lots of liquids. So, how did i get this, i dont excersice at all and the docs told me it could have been because of a needle prick...WHAT? any ways...i did my research and and before i was hospitalized i was on an atibiotic called (Azithromycin) for a strep throat i had. When i told the docs about this they told not likely...sure. My cpk lvl's where at 800+ then went down to 200 or so then they let me go home...prob is that i have this weird tugging sensation in my kidneys, just wondering if anyone knows what im talking about because i can't find any info on it anywhere else.

I have read as much as I can find about rhabdo and more than likely you had a virus (since you had a sore throat). There are times having a virus, along with possibly being a little dehydrated, or a little stressed or a little run-down, can all add up in your body and present itself as rhabdomyolysis. This is what the doctors think has happened to me. A touch of this and a touch of that and BAM!!! There doesn't seem to be any reason why you could have a virus and other things going on and NOT develop rhabdo, as well as there doesn't seem to be any reason why you can. This is just one of the many things that could cause rhabdo, but I thought I'd share it with you since it's what has happened to me.

I've never had any problems with my kidneys so I can't answer that but maybe someone else on this site can discuss that sensation with you. I know I do have weird muscle twitches from time to time in places where I've not felt muscle strain previously.

I stayed up until midnight last night without the benefit of a nap during the day. Got up at 6:15 a.m. I am sooo tired. My cardiologist said to expect this to go on for 3 to 4 months.

I'm now at 9 months and I still tire VERY easily. It gets discouraging but over the months, I've made improvement, but I'm still not back to 100% and some days when I feel total fatigue I begin to worry that I'm never going to feel like myself again. Then the next day, I'll feel much better. But the leg pain and the tiredness just have not gone away yet for me. This stuff is so puzzling! I wish I'd get my stamina back and I'm sure all of us on this site feel the same way.

The strange thing is, I can perform activities and feel fine while I'm doing them, then I'm knocked out afterwards. I can't seem to pace myself.

BBRhabdo,

Thank you for starting this thread. I wish all of you well and hope for speedy and full recoveries.

I am 30, a former D1 track athlete, very fit, but developed severe Rhabdo from a marathon on 4-10-11. I was in the hospital 8 days ( I shouldn't have been released because I was still very sick) and my CPK levels were up to 595,000. Yes, 595,000. My kidney's completely stopped functioning. The doctors believed that I would be on kidney dialysis for months, but thank God, my recovery has been speedy. I was off dialysis within about a month of my hospital release.

I feel very lucky, after reading all of your posts. I know my case was extremely severe, yet, I feel like I am pretty much back to normal and have been for weeks, and I am only 2 months removed from the event.

My work is phsyically exhausting. I own a lawn care company that sprays lawns. So, there are days that I am out in the heat for upwards of 12 hours. I might feel a little more tired than normal, but nothing extremely unusual. I do notice that I start feeling poorly if I get the slightest bit dehydrated. And, my stomach, intestinal situation is still not perfect. But, I feel lucky.

I found this site while searching for answers to unusual soreness following a first weight lifting session since the rhabdo. Now, I feel silly for thinking it was unusual to experience this only 2 months removed.

I think I might need to lower my confidence levels and start being a little more careful. I certainly do not want to relapse.

I leave you with this. Prayer works. There had to be thousands of people praying for me, and I felt it. I know my recovery was a miracle. I pray for miraculous healing in each of your lives as well.

josh

WOW! 595,000 just 2 months ago and you're feeling pretty much like yourself already?? That is WONDERFUL news for you!!! But it sure makes me wonder why after NINE MONTHS and a CPK of only 2,800 I'm still wearing out so easily and still experiencing leg aches. I don't know if reading your entry makes me feel hopeful or depressed - LOL - but it sure is good to hear someone has had this and has made it thru to feeling good again. Sometimes I begin to wonder if I'll ever feel "normal" again!! Seriously, thanks for the well wishes and keep us all posted.