I frequently re-read the responses under this "recovery" topic to keep reassuring myself that my post-rhabdo symptoms are normal.
On June 14 I received a letter from CVS/pharmacy which is the pharmacy where I get prescriptions filled. The letter said: "On June 9, 2011, the United States Food and Drug Administration (FDA) issued a MedWatch to notify doctors that they are recommending limiting the use of the highest approved dose of this product, simvastatin 80 mg, because of increased risk of muscle damage." The letter went on to note that rhabdomyolysis can be a result of taking the medication. Of course, we know that! But I'm amazed at how many other people have never heard the word rhabdo, let alone know any of the symptoms or the long recovery process.

If any of you are on Facebook, there is an open Rhabdomyolysis Support Group there.

I've been debating whether or not to share this, but risks be damned, so here we go. I posted here only once before. I got Rabdo Labor Day weekend last year. CPK = 70,000+. 7 days in hospital and three months of rehab. Like most of you it was caused by a statin drug. 9 months post, I still get sore arms and shoulders, fatigue and depression. I live in a Medical Marijuana state. My doc suggested I try it. He referred me to another MD who wrote the prescription. This is the best prescription I have ever had. It makes the soreness disappear completely. I get energized to go out and walk. My depression is gone. I dont particularly enjoy the stoned effect but Im hoping Ill get used to it. If youve tried everything else and still suffer the after effects of Rabdo, I would recommend giving this a try.

Has anyone in this group been taken off a statin drug because of rhabdo, then been put back on at a lower dosage when the rhabdo was under control If so, what has been your experience?

After 16 months of recovery now I am feeling very good. the unique issue is endurance but I think my case is a tired phobia developed after rhabdo. Do you have a similar issue?

When did you start consistently feeling better? I'm at nine (9) months and FINALLY just a week ago, I started feeling more like myself and am able to do more, but I still tire easily, not quite as easily. I'm not sure what you mean by a tired phobia but I do know I'm VERY cautious if I do anything different. It's always in the back of my mind not to overdo it. I'm really scared of developing full-blown rhabdo again, so I am very cautious. Maybe this comment helps? Since there seems to be no definitive answers about the after-affects of rhabdo, we all have to rely on each other and our experiences. I appreciate it very much when any of you post on this site! xoxooxo Denise

I'm 2+ months since developing rhabdo and 1 month since my blood tests were normal. My cardiologist has started me back on 10 mg daily of pravastatin instead of 80 mg of simvastatin. So far, I'm tolerating it. I'm taking CoQ10 along with the statin. I'll have blood work done at the beginning of August as long as things continue in a positive way. I've been able to start walking on the treadmill again. I can do it for 30 minutes, as before, but I can't do the 3.5 mph rate I was used to doing. Right now, I'm at 2.7 mph. I still need a LOT of sleep. I still get cold easily. I haven't worn shorts or a sleeveless top yet, and much of the time I have on a long-sleeved top. (I live in PA, not Alaska!) My leg muscles still ache but not constantly. I often get these "wavy" sensations in my hamstring muscles and calves; it doesn't hurt, but it's weird. I am very grateful for this site.

WOW! After reading your post, I realize I'm way behind you in recovery and I'm at 9 months. There's no way I could walk that long or that fast on a treadmill. Besides cleaning one house daily, I've been walking about 1/2 mile each evening thru my neighborhood. My legs haven't been as achey as they were but I haven't had an entirely pain-free day yet, my legs are always there reminding me that I'm not back to 100% yet. I think I know what you mean by "waves" in your legs. I get that in my stomach when I'm tired. Thanks for sharing your experiences. I know it helps me to read what others are experiencing.

I started consistently feeling better after 13 months and there are bad days yet but once or twice per month. Yesterday I visited my doctor and after a long period of talking about my recovery, they told me that there are people that never get bakc form rhabdo and have to deal with cronique fatigue for ever, but that king of people never feel better wich is not my case. Second important issue is that people whom developed rhabdo have a lot of predisposition to develop a post traumatic stress disorder, depression( not sadness) and/or panic attack and after rhabdo when we have peaks of energy, bad or good days( feeling tired, coold , etc..) is related to this ( my doctors have seen many athlets after rhabdo). They are complety sure that I need to take a SSRI for 6 months in order to relax muscles and fix a possible stress disorder to get back 100%.

They gave me a SSRI called in Mexico altruline (sertraline) and lets see if their experience in other cases helps me to get back full!!

Talk with your doctor abuot it and I hope all of you are better !!

My doctor has prescribed .5 mg of Xanex, which I take at bedtime so I get a good night's sleep. A good night's sleep is very helpful in overcoming rhabdo. Without a good night's sleep, I'm sure I wouldn't be feeling as good as I do now. My doctor also said the Xanex was good for relaxing my aching muscles that rhabdo has caused. He felt that it was a good thing for me to stay on until all my rhabdo symptoms were gone, and I agree, because on the few nights that I've tried to sleep without it, I didn't sleep as deeply and my legs hurt even more the next day. With such a low dose, I'm not worried about getting addicted to it. It just helps the quality of my life right now while I'm getting thru rhabdo.

Neecee, your post provides some insight for me. I have a standing prescription for ativan (similar to xanax) from my cardiologist for mild anxiety. I only use it as needed. I know it contains a mild muscle relaxant, so I will see how it works when my legs ache. Thanks. As I keep saying, this support group is invaluable.

You are welcome. I find this discussion group has been more helpful to me than any "specialist". After all, we all know first-hand what we're experiencing and can relate to each others aches, pains and concerns. I'm always happy when I see that someone has posted, it's nice to know that we're not alone. Thanks to everyone on this site!

I've actually felt quite good for over a week, then yesterday I was totally exhausted. I took a 4-hour nap in the afternoon, then slept 8 hours at night. This morning I'm good again. It's a bit unnerving how symptoms can sort of smack you down after you've been rolling along with no problems.

Overall, I would say you're doing really well for just being a couple months into this. Good for you!! I don't think I was feeling consistently better until 6 months. Now at 10 months, I'm doing so much better but if I do something different and strenuous it still can make me a little achey and I tire easily but the fatique seems to be gone. Thank goodness!

I recently developed Rhabdo (7/7/11) from a workout I did that night. I went to my gym, explaining to the trainer that I had a calf injury that I was going to PT for, so we decided to concentrate on my upper body. We did high reps of Kettle bell swings with a 12lb weight, pull-ups and Squats with and overhead press. I consider myself to be an athlete and in decent shape. I knew I was going to be sore from the workout, as I hadn't worked out in a few weeks, due to my calf injury. That night, I left the gym, after only being there for 35 minutes, went home, made dinner and had a few glasses of wine. I did not continue hydrating with water or any other liquid. Friday, I woke up and my arms were very sore. I just chalked it up to the workout. I drank about a liter of water in the morning, and actually left work with friends, since we had a half day. We ended up going for drinks, where I indulged in a couple Margaritas and a few beers. I did drink water along with the alcohol. Saturday morning, I woke up and both arms were swollen, from my shoulders to my rists, mostly in my biceps and forearms. It got worse throughout the day, and I said to BF, I think I need to go to the ER. Something is wrong. I had extreme stiffness where I couldn't straighten my arms. We decided to wait until Sunday to see if they were better. I hydrated all Saturday and Saturday night. Sunday, they were much worse. My biceps were 2 inches bigger than normal. Let me backtrack, saying that I researched the heck out of my symptoms and diagnosed myself with Rhabdo prior to going to the ER. I knew it could be something serious, so I got myself to the ER. My CPK levels were 36,000. They put me on an IV and then sent me home about 8 hours later, requesting that I come back on Monday for more tests. I came back in on Monday, where my levels had dropped to 26,000, after following their orders of drinking a Gatorade every 4 hours. I am actually shocked they never admitted me. My kidney values were fine, though my liver values were high, which they related to the alcohol I told them I had consumed. Discharge orders, ice packs, fluids and plenty of rest, no exercise for 2 weeks. NO follow-up needed....huh, really? I contacted my primary Doctor which I saw on Thursday. He did another round of blood work, though I haven't gotten the results back yet. I haven't had any alcohol since last Friday, afraid this could aid in the levels not coming down to normal. I am very sensitive in my arms, feel COLD constantly. The swelling has gone mostly down, though seems to flair up a bit towards the end of the day.

Lessons learned: Know my limits with exercise, make sure I am properly hydrated, even drinking recovery beverages after a workout and to stay away from alcohol after a workout. I really think this contributed to my downfall.