Rhabdomyolysis Support Group
Rhabdomyolysis is the breakdown of skeletal muscle due to injury. The result of this process is renal failure due to accumulation of muscle breakdown products in the bloodstream, which are injurous to the kidney. Treatment is with intravenous fluids, and dialysis if necessary. The main therapeutic measure is hyperhydration (by administering intravenous fluids), and if...
Hello everyone..
I got rhabdo 4/2014 after a 45 minute spin class trial at a new gym. I was 23 at the time, I had done Crossfit and other intense exercises previously with no problems. After the spin class I felt fine and went back the next day to take a Pilates class. The following day, my quads became stiff and sore. I went back to the gym and went in the sauna, and rolled out on foam rollers, thinking it would help my sore muscles The next day, I couldn't bend my legs at all. My quads were on fire, very stiff and swollen.
I went to the ER and my urine was cola colored. I was admitted with CK of 53,000 which rose to 64,000. After a week I was discharged when my CK fell to 6,000.
I was terrified to exercise for 4 months, even though I felt like I'd recovered. I finally did some very light exercise, and immediately felt the rhabdo symptoms return. Back in the hospital, my CK was 1,000. Another month went by and I took a light yoga class, symptoms returned again. The first rhabdo episode was from intense exercise, but I continued to get it from only very light exercise, which was concerning.
Since then, I've developed constant burning pain in my quads. It's made worse by walking, even short distances, sitting or standing too long, and lack of sleep. I am always in pain and it's especially worse at night when I get twinges in addition to the burning. I can't do any exercise at all. It's hard to sleep or focus at work with the pain.
I've seen a number of rheumatologists and neurologists over the past year and a half. My CK is normal but blood work returned a positive ANA result of 1:1280. People with lupus typically have such high ANA results, but I have no other symptoms of lupus. Has anyone else had a positive result for this test? I have also had an EMG which came back normal.
Doctors are telling me I may have a metabolic condition, which is strictly genetic in nature. This seems odd given I have no family history of this and have been highly active in the past with no problems. It seems very clear to me that what I have is a *result* of the initial incident, but doctors won't say definitively. They are trying to make the case that I must've had this underlying metabolic X ndition all along that happened to show itself through this incident. They are also telling me I need a muscle biopsy, which I hear is a painful procedure. If the biopsy doesn't show anything and I don't have a metabolic condition, doctors are saying that's the end of the road as far as tests they can do to understand what's going on.
I'm now 25 and losing hope that this will ever be resolved. I have gained a lot of weight from lack of exercise and feel depressed because I don't think I'll ever be active again. I am also worried that I'll be in pain the rest of my life, and will have to live with it because I don't want to get into a cycle of taking painkillers everyday.
Would really appreciate any advice, no matter how small from anyone who may have gone through something similar.
I got rhabdo 4/2014 after a 45 minute spin class trial at a new gym. I was 23 at the time, I had done Crossfit and other intense exercises previously with no problems. After the spin class I felt fine and went back the next day to take a Pilates class. The following day, my quads became stiff and sore. I went back to the gym and went in the sauna, and rolled out on foam rollers, thinking it would help my sore muscles The next day, I couldn't bend my legs at all. My quads were on fire, very stiff and swollen.
I went to the ER and my urine was cola colored. I was admitted with CK of 53,000 which rose to 64,000. After a week I was discharged when my CK fell to 6,000.
I was terrified to exercise for 4 months, even though I felt like I'd recovered. I finally did some very light exercise, and immediately felt the rhabdo symptoms return. Back in the hospital, my CK was 1,000. Another month went by and I took a light yoga class, symptoms returned again. The first rhabdo episode was from intense exercise, but I continued to get it from only very light exercise, which was concerning.
Since then, I've developed constant burning pain in my quads. It's made worse by walking, even short distances, sitting or standing too long, and lack of sleep. I am always in pain and it's especially worse at night when I get twinges in addition to the burning. I can't do any exercise at all. It's hard to sleep or focus at work with the pain.
I've seen a number of rheumatologists and neurologists over the past year and a half. My CK is normal but blood work returned a positive ANA result of 1:1280. People with lupus typically have such high ANA results, but I have no other symptoms of lupus. Has anyone else had a positive result for this test? I have also had an EMG which came back normal.
Doctors are telling me I may have a metabolic condition, which is strictly genetic in nature. This seems odd given I have no family history of this and have been highly active in the past with no problems. It seems very clear to me that what I have is a *result* of the initial incident, but doctors won't say definitively. They are trying to make the case that I must've had this underlying metabolic X ndition all along that happened to show itself through this incident. They are also telling me I need a muscle biopsy, which I hear is a painful procedure. If the biopsy doesn't show anything and I don't have a metabolic condition, doctors are saying that's the end of the road as far as tests they can do to understand what's going on.
I'm now 25 and losing hope that this will ever be resolved. I have gained a lot of weight from lack of exercise and feel depressed because I don't think I'll ever be active again. I am also worried that I'll be in pain the rest of my life, and will have to live with it because I don't want to get into a cycle of taking painkillers everyday.
Would really appreciate any advice, no matter how small from anyone who may have gone through something similar.
This is my 3rd day home from the hospital, had exact same initial story as you (spin class, CK levels etc). I'm so new/early in this process but figured I'd share my current thoughts.
I've had hypothyroidism for long time, and seem to have had a few other things happen that might be autoimmune/cells getting confused. I have an inkling that birth control use has perhaps messed either with my hypothyroid pills effectiveness and/or with the other metabolic systems that relate (HPA, adrenal etc). Tested super low vitamin D last year. (Celiac disease can also mess with nutrient absorption, which can affect a lot).
Anyway, so don't know if you take birth control or tested for hypothyroid, sounds like your blood test would check electrolytes and such. I was crashing at the hospital from low magnesium then low potassium. I'm feeling OK now and taking fish oil, vitamin B, and magnesium.
My friend takes magnesium drink just before bed to help with restless legs syndrome (relax the muscles, maybe your twitches?). Low magnesium levels can relate to sensitivity to noise/insomnia I read somewhere. Worth a try. Her powder stuff is called CALM.
Ok hope any of that helps. So sorry to hear of your ordeal !
I developed Rhabdo 3 weeks ago. I had heard about rhabdo and I knew that the hospital would be resistant to the idea that my symptoms = rhabdo, but I wasn't prepared for how hard I had to fight to get them to take me seriously and check my creatine kinase levels.
My rhabdo journey has been very emotional, and I get frequent "Rhab attacks" - anxiety attacks associated with rhabdo. I think I am going to see my doctor for an anti-anxiety prescription to help me cope. I am still recovering, and have been documenting my journey on YouTube.
My Rhabdo Journey
https://www.youtube.com/playlist?list=PLIoo_NGYkHONZyoOGhKx0jxWW9MYyMO5J
If any one else out there has experienced the emotional trauma of rhabdo, and the struggles of trying to recover, please leave a comment on my vlogs, I'd love to hear from you!
I went to a chinese doctor who helped me to no end. This is what worked for me. Dont get me wrong I am still in pain and still get tired but I dont give up on trying to get back to exercise. Even if you can start with a 5 minute walk, that will help. Also try to eat as well as you can. You need all your strength to get through this and eating well will definately help . I know the road ahead looks really dark right now but if you can try and find alternative ways to cope with the symptons then slowly things will get better.
I was wondering if you would provide an update on your recovery/condition. I, too, got a (low) positive Ana and ssa result after rhabdo...no family history of autoimmune diseases and I, too, am convinced it's a result of the incident since I never had any issues or symptoms prior. It's been almost 2 months now and the joint/muscle pain is getting better and so is the fatigue, but I want answers that make sense.
How about you? I'm having the same issue.