Hi everyone, I hope your are staying strong. Tim, have you seen the neuro doc yet. What was the update-did they find out anything?

Working only a couple hours a day is so tiring. Really wonder if it is worth it working right now. We will see how this month goes. I hate it but I might have to drop down to not working for a while to get better. I sleep anywhere from 2-4 hours after I work. The sleep helps with both the pain and the exhaustion. Family and friends are good for me through this.

Everyone, I hope you have a great week and rest of your summer.

Hey everyone, I just got seen at the UW yesterday. Early by a month and a half YEAH!!! The doctor is leaning to a metabolic myopathy being the cause-specifically mitochondrial. He is doing a lot of blood and urine work up. Wants me to start physical therapy to try to correct my walking. Got 2-3 weeks before we know the results. Hope everyone is doing good. Just thought I would check in to see how everyone was doing and if anyone has found anything new out.

This is my 2nd bout with rhabdo in 8 years. Both times I've seen my family doctor. I was wondering if I need to see a specialist? And who would I see, what type of doctor would specialize in knowing more about rhabo than my family doctor? I was in the hospital for 4 days and have been home 3 weeks now and still feel so tired and weak. Some days are worse than others, like today. Was that your experience to have good days and bad? My CPK level has improved alot. It's down to 465 but my legs still feel so weak!

Neecee - very sorry to hear of your experience. Regarding your question of a specialist - t would depend upon the nature of what caused the Rhabdo. A kidney specialist (nephrologist) was most likely involved at some point within your hospitalization in terms of reviewing your kidney function. If your kidney function is abnormal - further attention from this specialist would benefit you. Your primary care, however, should be the point person to refer you to the best referral / follow-up. Always keep your primary care in the loop even if you seek attention from non-traditional resources. If your Rhabdo was caused by prescription drugs such as statins - you may want to consult with a lipid specialist as further use of statins may not be the best option for managing your elevated cholesterol/triglycerides. Neuromusculoskeletal medicine may be another avenue to explore if your conditions do not improve. Some find a great value in a Nutritionist - someone who can look at the overall picture an recommend a diet which may counterbalance the lack of energy. Once again, consult with your primary care m.d. prior to moving forward.
Keeping a journal helps to record your daily condition and better remember when reporting to your doctor. Don't forget to get plenty of rest post-rhabdo, excellent nutrition and keep a positive attitude!!! Hang in there!!!!!!!!

Hi Neecee, Sorry to hear that you are going through a second bout of this horrible thing. First determine if your are taking a statin (cholesterol drugs I believe), they can cause many cases. Does this happen after exercise-if so you may need to see a nueomuscular specialist-may being caused by a disorder. Mine they believe is do to a muscle disease. It sucks. Happened in June and still only able to work a few hours a day and no major physical work. I did 2 15 minutes weeding sessions, 4 hours a part and was down for the next two days with exhaustion and pain. Take it easy. You can always send a message if you just need to talk. I know it is so frustrating.

Good thoughts to you,
Ange

No, my rhabdo both times wasn't caused by statin drugs, over-exertion, snake bite, etc. My family dr. just believes it's "a viral thing". According to the internet, about 2% of the population just "get it" for no real reason. Guess I'm one of the lucky ones- NOT! Anyway, last time it took me 8 weeks to get my CPK level in the normal range, but since this time I caught it before it got too high, I was hoping to get over it quicker. It's now been 4+ weeks & although my CPK level is down to 485, I am still so tired and weak. I have gone back to work. I'm self-employed and I clean houses. I clean one house each day (usually about 3 hours) and then I come home and do NOTHING the rest of the day/evening.

Being tired and my legs feeling weak are really my only symptoms but it's so discouraging not feeling much better. Each day, it just seems I stay about the same. Thanks for any imput and suggestions anyone might have.

Does anyone have any information about getting a massage while fighting rhabdo? My dr. told me not to get a "deep tissue" massage but he said light touch would be all right. Has anyone else asked their dr. about this? I don't want to do anything that might hurt my muscles but I'm also so achy that a massage sounds wonderful. Just looking for another opinion. Thanks!

Regarding the massage - my doc agreed to proceed with caution. He described Rhabdo as something like "chemical trauma" to your muscles. The muscle cells need to heal and a massage will manipulate and potentially damage newly repaired tissue. Proceed with caution.

Take it calm!
I had exertional-rhabdo 8 months ago. At this point a can work full day and some days I feel as nothing happend. I dont walk to much and nothing exersice yet. In factvI started to feel better one month ago when I took CQ10 and alphalipoic-acid from a brand called Usana ( coquinone 30) some days a feel I can go to driving range and start a few minutes golfing but my doc. Recomend to wait a few weeks more. Other recomendation from my doc is to start a rehabioitation program from a specialist next month in order to help streinght, resistance and energy. I will write my result. Other issue that affects my condition after rhabdo was the post traumatic stress disorder with a lot of feelings in my body that was not related to rabhdo but very similar( twiks, tremblings, waves, spasms, sickness) even 6 months after rabhdo. Think positive, move, rest, keep hydratated and be patient!!

Alfooa - thanks for your input!! Stay strong - yes eat well, move, get REST - everything in moderation!!! Listen to your body - BE WELL!!

Thanks for your comments about a massage. That's something I'm going to wait on now that I've read your responses and after the dr. telling me to be cautious also. I have another question. How much water, or liquids, does everyone drink each day? I drink around 15 large glasses. I've not had kidney problems either time and I want to keep it that way but I sure get tired of hydrating so much each day. I'm just curious what everyone else is doing. Thanks everyon!. It's nice to feel like others know what I'm going thru, although I hate it that any of you have rhabdo!!

I also take bioenergetic massage ( its deep) since 2 month ago, I didnt ask doctor cause I did not think was dangerous. I take once per week and since massage and coquinone 30 I am going back to be normal. After your coments I will stop massage may be improve faster!!! But I havent have problems with.

Well, my CPK is down to 183, which is almost normal. I felt really good for a couple days last week but this week, I feel bad again. This is driving me crazy!

hi I to have suffered from this and I wanted to ask can you get this over again? Because I honestly dont want to go through this again. I had it over a year ago and I still havent fully recovered and cant work due to weakness,shortness of breath and alot of other things. I cant even walk up nor down steps, I get very tired out very quickly and I have muscle cramps like crazy. I haven't been the same since I was hosiptalized with this. Enough yappping anyway I was just wondering if you can get this again once you had it? thank you

This is my second bout with rhabdo. I had it 8 years ago. Next week will be 3 months that I've had it this time. I am improving but it is slow going!! I'm nowhere back to 100%. I tire easily & my legs get so fatigued. I get depressed too because I feel like I should be making faster progress. Since so few people know about it, you feel pretty isolated. I'd be glad to email with you and chat about it. I found another friend on this website, Dark Angel, and it has been nice discussing it with her. Email me anytime.