long term side effects of rhabdomyolysis

They didn't let me leave the hospital till the swelling in my legs went down. I can totally relate to the pain. I couldn't even sit down without tears coming to my eyes. I gained 14lbs in 2 days (all in my legs). I am now exercising regularly and have not ha a relapse. I often think about it and make sure that I maintain a proper diet (lots of water and bananas) when I'm working out. It will get better.

I had rhabdo in 2011.  One of the symptoms I had at the time, in addition to excruciating muscle pain, was being cold.  Now that I have recovered, I still have feelings of being cold when no one else is.  I have been noticing that it's not my body that's cold but rather one of my thigh muscles that was severely affected by the rhabdo and the triceps muscle of my left arm which was also affected.  Has anyone else experienced anything like this?

iam a 21 year old male i was just realeased from the hospital about 2 weeks  ago for rhabdo, my cpk count reached 115,000, the hospital didn't give me to much info on anything. so i was wondering would it be ok for me to workout again like take it easy and build myself up? Could anybody answer me please? my cpk is back to normal now.

Hi my name is Christian. I am 25 years old and was diagnosed with rhabdomyaloscis at age 18. At the time doctors did'nt really know much about the disease, as I go on this will be something that you may be able to inform me with. Doctors at the time said it was mostly something that happened to atheletes, older people or homeless people that had laid on hard surfaces or in the same spot without moving for long periods of time. My ck elevated to 250000 and i was in icu for a month. I had had no prior problems or symptoms and was perfectly healthy. When it occured again, about a month or so later, i was refered to a specialist who said I had a genetic dificiancy that was somehow triggered to cause my rhabdo. Through the next five years it happened almost reguarly. I learned when to SLOW DOWN if feeling sick to avoid from it being so severe. It seems over the last couple of years it has slowed. I live life normally. Though I wouldnt dream of trying to run a mile or do extensive excersice for any long amount of time, especially in the heat. I have not been seeing a doctor, not in the last three years or so. I know this is very careless and quiet stupid on my behalf, as the cases of this disease seem to be multiplying over the years and new developments and possible treatments may become available without me having knowledge of them. I just dont have the transportation or insurance for it. I feel, even now, a discomfort in my upper legs. I notice I dont urinate as often as i think i should, though i dont "feel" any kidney problems. What is causing so many perfectly healthy people to be suddenly diangnosed with this rare, unusual, and DANGEROUS disease? I noticed just after my first case, there was an article in the paper with the starting pitcher for a high school softball team having rhabdo. Where has it been until now? Why suddenly is it seemingly spreading and doctors really know so little about it. We can nearly read articles such as these and look up the disease ourselves and find out as much as the doctors know. As a matter of fact, its exactly what my doctor did to learn how to treat me. Its so quiet though. People around us dont notice. We seem perfectly normal. People cant see what we have, and when we tell them, if they dont think its a complete crock or sob story, they dont realize the severity of it at all. It seems to me its spreading and no one even knows it exist, until it happens. If you can speak with me please reply. look me up on facebook. Christian Durham from North Carolina. My email is

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. I would like an update on my disease if there is any.

Old thread but google searching long term after effects only yielded this site...there are a lot of question but no answers.  Please be aware that the following is the result of my google web searching, I'm not a doctor and I only have an associates degree (and a heavy interest) in the sciences.  My information comes from National Center for Biotechnology Information (ncbi.nlm.nih.gov) and WebMd, I do NOT use web forums or wikipedia as sources.  Please take the following with a grain of salt, as purely being my opinion, and not coming from an expert.  For REAL answers ask your doctor ;)

 

So what are the long term side effects?  It depends on the severity of your condition.Naturally kidney failure or decreased kidney function COULD be one result, only a renal function panel (lab work) and doctor visits would determine this.  The more severe the kidney failure/damage the longer recovery of kidney function will be.  In most cases renal function is totally restored.

Another aspect of this condition is muscle damage and loss of muscle tissue, also called muscle atrophy.  This is also reversed in time, again with appropriate care.  On a side note another cause of rhabod is from over exertion during exercises or long term exposure to high heat and humidity.  That being said light exercise can help restore damaged muscle, but care must be taken to not over exert.  This will lead to hypertrophia (enlargement of muscle fibers) but some exercises, such as "stretch overload", have been shown to also cause hyperplasia (increase in number of muscle fibers).

I drank 8 ounces of Mona Vie 3 times a day and have had no other incidents since 07. My CK levels reached 1.2 million in the hospital. I was active duty in the Army and stationed in Germany at the time. The Germans sent me home after a few days and to follow up with my American doctors. It took some time for my numbers to go back down. The Army eventually medically released me due to a possible reoccurrence. All I did was pushups! that was it. 6 years later I what I feel is me being weaker than I like. I am going to start up at a gym soon and take it slow to see if I can regain some of my strength back.I hope this helps. If you have any news from your husband let me know.

Bob

I too had rhabdo after a "spin" class -- never even heard of rhabdo, until my daughter looked up my symptoms on the internet for having leg muscle pain for many days after the class. Hospitalized for 5 days, number in ER were over 13,000 --the ER doctor and the nurse were sure when I first got there I didn't have rhabdo, as I was not displaying any other symptoms other than extreme muscle soreness in my thighs, the was last October. I have noticed that my thighs often ache for no apparent reason, and am wondering if it is a side effect of rhabdo. My internist told me once you have rhabdo, you run the risk of it ocurring again.

In my own experience, 4 years after the rhabdomyolysis from police academy boot camp, still much persistent pain in the quads and lower back, regularly have difficulty sleeping, frequent headaches, fatigue also. When I was hospitalized initially there wasn't much in the news or online about rhabdomyolysis but now I see it everywhere. There are many if us out there, just reach out.

For my ab strain I used several herbal remedies. I applied an essential oil blend that was comfrey, arnica and st johns wort. I believe lavender, chamomile and peppermint were in there also. Comfrey is excellent for healing muscles and joints. I applied it every hour for at least 3-4 weeks. However, my strain (2nd strain in 4 months the first being minor rhabdo) was a bit stubborn, so I moved on to a castor oil pack. Basically you have a wool cloth soaked with castor oil applied to the area, put plastic over that (to keep the castor oil from staining anything) and apply a heating pad on top. This helps drain the lymphatic system and heal the injured tissue. keep the pad on for an hour, then rinse the area with warm baking soda water (1/2tsp per cup). I also started taking ashwagandha, as its supposed to help with muscle pain. I was heavy on the dose for a month (1 tsp 3x a day). All of these treatments were at the advice of the person who owned the herbal shop. They warn you that comfrey is hard on the liver, however I was told if you dont have a compromised liver, you should be fine.

I've also used a helichrysym blend that contained comfrey for strains and joint pains, but I liked the comfrey/arnica/st johns blend better. Good luck, and be patient with the herbal treatments and your recovery. It helps also to not focus so much on the injured muscle, as in try not to stress and panic (easier said than done)

I was diagnosed with rhabdomyolysis in july of 2011,at 36 years old after training with highway patrol school.I was in hospital for 3 weeks.I had compartment syndrome,kidney failure.I spent 3 months on dialysis.Now I still have nerve damage in my arms and legs with muscle cramps and weakness.I have to take 3 diff. blood pressure meds. a day to control it.I have poor tolerance to heat and cold now.I dehydrate easily so I have to drink plenty of fluids even if I barely do any activity.

I just got out of the hospital with a severe case of Rhabdo. I have horrible pain in the muscles that were affected. I am wondering how long your muscle pain and weakness lasted?

I am a high school distance runner, one I the top in my state and had a horrible race. Went to get blood work done to ind out if there is somthing wrong and it turns out I have mild rhabdo, I have been looking for an answer to this but I have found nothing. If I take a few weeks to recover and then continue to train (6 to 7 days of running 60 miles per week) will it show up again, continue to affect me? Or will the few weeks of recovery get me back to normal and I can go back to training as usual? Someone please help

You'll hear most doctors say that there are no long-term effects of rhabdo.  Well, I'm hear to tell you if what I'm experiencing it's "long-term" then I don't know what is. . .but I also tell you what one doctor finally did to help me manage the long-term physical effects.  I hope that helps.  But, I'll warn you, my ending is not all sunshine and roses, and in that regard, I consider myself (based on what I have read and what doctors have told me) to be an except to the norm, but I felt leaving out the whole story would be dishonest.I had Rhabdo June 2010.  I had collapsed Tues or Wed night, June 22 or 23 (those days are a blurr except I got up in the middle of the night to go to the bathroom and my legs collapsed from under me).   I wasn't found until Friday, June 25 in the afternoon.   I can't remember what my cpk level was, but based on whatever it was, the DR. said I had to have been down at least 2 and a half days.  CT showed no stroke, no brain bleed.  My potassium was so low the Docs were surprised I wasn't dead. [Actually, I sort of was as the paramedics 'lost me' several times as they worked on for over an hour in their rig parked on my front lawn to "stabilize" me before the could transport me to the E.R., which is right across the street from my home.  As I type, I can see the ER entrance from my front window. My mother, who had found me, kept yelling to drive across the street to the ER--she was told they couldn't until I was stable enough to transport!]  My mother is an RN and questioned that the low potassium could have been the result of laying on the floor for 2 and half days, but the docs decided low potassium caused the collapse.  Anyway, when I collapsed I ended up on my left side.  So, it was like my left arm and leg was paralyzed except I was in excruciating pain.  By the time I was in the E.R. I was out of my mind and continued to scream in pain even after morphine was given eventually (according to my mother who was in the room with me, pain medication was withheld for two hours until blood work--including tox screen--and CT scan came back. Of course tox screen was clean but cpk off the roof and potassium in the sub-basement.  Obviously I was admitted.  I started physical therapy in the hospital.  I couldn't move my left arm except for a few inches away from my body, nor could I walk.   I thought I'd never be able to brush my own hair, let alone walk.  Even though the left side was the worst, my right side was also very weak and in pain from the rhabdo.  I felt helpless.  The potassium was "fixed" with a few IV banana bags (replaced electrolytes), and I was put on a potassium supplement, but the rhabdo was the big problem.   I was discharged with a walker (and even then I was so weak I needed assistance).  Luckily, my recently retired R.N. mother took me to her home so I didn't have to go into a nursing home facility.I was able to go to the bathroom, shower (she got a tub chair) and dress myself--but my mother had to help me onto and off the tub chair, brush my hair, and hook my bra.  Once a week she took me to a long time friend and hairstylist to wash my hair (the raised, tilted back chair with extra neck support).  My mother cooked and did my laundry, drove me to doc. appts and physical therapy--assisted with my walking (even with the walker) and arm and leg exercises.  All this because of the rhabdo.  For the first time as long as I could remember, I did not go to Milwaukee's Irishfest (in my family, we don't always get together for the holidays, but by God, we never miss an Irishfest).   My family (except for my mother) kept saying, "How bad can it be? We can push you around in a wheelchair."  But, they finally understood the magnitude of the situation when I gave up my Alice Cooper concert tickets (please don't ask who 'she' is Lol)--the first Alice Cooper concert I was missing since 1974!  (Now they were really, really worried).  I also experienced aphasia in the hospital (similar to someone who has had a stroke--but I did not have a stroke).  I was told it was not caused by the low potassium.  My mother really wanted to know, so I signed something to get the paramedic records and the doctor that reviewed them assured me that when the paramedics worked on me, I was never "lost" long enough to have my brain deprived of oxygen to the point it would cause brain damage.  Could it be from the rhabdo?  I was told by the hospitalist and it was POSSIBLE because as my muscles broke down, the enzymes being released acted like poison to my body.  So my brain was poisoned?  Not typically; my kidneys got the worst of it.  The hospitalist thought I would fully recover from the brain fog and aphasia.  My kidneys are fully recovered.  The brain fog, aphasia and muscle pain and weakness has gotten better, but I have not fully recovered.  I can type this in fairly coherent sentences using grown up words because I've been working on this over the course of a day.  The good that came out of this was that the brain CT scan caught part of my neck and that got the attention of the radiologist who saw a thyroid full of tumors.  My primary care referred me to a ENT and checked my thyroid (numbers came back normal, like they had in the past).  But, after untrasound showed a thyroid packed tight with large "nodules" (the ENT's word for tumors) and needle biopsy came back cancer for the few they checked, hypothyroidism, I had two surgeries (the tumors were cancerous) and radiation. Interestingly, my ENT showed me the pathology report and the handwritten note on the front page, "On a personal note this was the most diseased thyroid I've seen in 25 years practice.  Patient obviously undiagnosed hashimotos [severe hypothyroidism] so advanced that was easily acquired  20+ years ago.  Too bad, [because] the patient could have lived a much better quality of life (last 5 words were underlined three times). Damn labs need to update their numbers.]  The ENT explained that in 2001 the normal TSH of 5.0 -6.0 as a high normal was reduced to 3.0 was the high normal.  Anyone over 3.0 was considered having hypothyroidism.  Mine had always hovered around 5.4 - 5.6.  One of the CAUSES of RABDO is HYPOTHYROIDISM!  It was the hypothyroidism that caused the weakness that caused the collapse which led to low potassium, etc.Three and a half years later, I can walk without a cane, although sometimes I still need it if I have a lot of walking to do (ex. walking around Milwaukee's SummerFest (music festival).  I used it this past July 2013 to hike 9 miles round trip on a camping trip.  Most people could have done that hike in a third or half the time it took me.  It took me forever. . . but it was worth the accomplishment.  I took it slow, drank water along the way and back.  Took breaks.  But when on the way back, I was in a lot of pain. . . put kept plugging away.  A few days earlier I did a 4.5 mile round trip that took me longer than most, and handled that well.  But, by the time I got back to camp, the people that went ahead had ice ready for me.  I went directly to the cabin to lay down and both legs--from ankles to me knees to my thigh muscles were packed in ice.  I drank more water and drank soup broth.  I felt physically sick.  The medication I use to manage my lingering rhabdo pain includes:  Cymbalta 60mg [Sold as an antidepressant and anti-anxiety, it also does helps people with fibromyalgia & muscle pain.  I started out at 30mg--nothing/then 60mg--noticed an improvement for a year, then nothing/upped it to 60mg twice a day and it REALLY works for me.] Diclofenac (anti-inflamatory Nsaid) 60 mg twice daily (so I canNOT take ibruprofin, naproxin or advil because they are also Nsaids).  The doctor added Tizanidine (muscle relaxer) 4mg (1 three times a day).  I used them spread out during the day because I was in so much pain, I could go anyplace except my doctor appts and I certainly couldn't drive anyway.  At first I pill made me drowsy, but not anymore.  Now, my muscles are relaxed, yet I don't feel drowsy.  I was only given Tylenol/Vicoden (500mg/5mg) for a short time.  It really didn't help, and that wasn't a permanent solution.  Before the collapse, I used to commute 120 miles round trip and teach AT-Risk,  mentally-ill & adjudicated youth at a Residential Treatment Center which had its' own in-house school. Students lived at the treatment center (obviously, that's why it's called "Residential") so 'school' is part of their daily weekday routine all year round, which meant the ONLY vacation day the students and teachers (me) had were Jan. 1, Memorial Day, July 4, Labor Day, Thanksgiving Day (not the day after), and Dec. 25 (not Dec.24  or Dec. 26).  But I absolutely LOVED my job.  Honestly, I got up 95% of every mornings looking forward to the day.  I also doubled as a Behavioral Specialist trained to calmly de-escalate dangerous situations or even 'take down' a kid to protect another kid, staff member or myself.  After the collapse, my ability to do my job was compromised.  Not just physically, but mentally (the brain fog and aphasia).  This is extremely sad and frustrating for me because I've always been a great multi-tasker.  I was known by my fellow workers as an "expert" in my field; someone who had the skill to be calm (like we were trained) and still de-escalate a group of teenage boys whose last stop was Wisconsin's Juvenile Corrections Dept. (Lincoln Hills) whether it be in a classroom, cafeteria or outside basketball court.  I have yet to be OK'd to return to that kind of work environment--or any school environment.  And, I can't even be mad at the doctors, because I know they're right--the "eyes behind my head" feel like they have been closed permanently.  How can a teacher, even in the best school, do her job without being able to be fully aware of the classroom environment at all times?  So, for me, at age 52, I'm on disability.  Yes, I volunteer at the Literacy center and tutor adults learning English.  I can handle I or 2 very motivated adult students at a time, who understand why sometimes I'm literally at a loss for words.  For many, they feel "needed" that sometimes they can help me.  Some of these students are close to my age or are my age or older.  My extreme situation (of having to go on disability) resulted not only because of the Rhabdo, but also because of the other factors like the undiagnosed hypothyroidism and low potassium.  Maybe it was a combination.  Good luck.

I was diagnosed in Oct of 2010. I was hospitalized for almost 2 weeks. When I was discharged

Im 17 and was recently diagnosed with rhabdo a few weeks back. I was told I had a pretty severe case and if I waited another day to go into the hospital I would probably have had kidney failure. I was in ICU for 4 days, where my CPK levels were off the charts the entire time, then on the regular floor for two days, where they ended up dropping down to 5.9k on the last test. I was discharged after about a week in the hospital and have been doing literally nothing (as I was told) except schoolwork and resting. I've been drinking plenty... PLENTY of water but the pain sometimes comes back and goes. I went back to the hospital and they said every test result came back normal yet the pain is still there. I've also been losing a decent amount of weight in just less than a month. Headaches also come and go frequently and I'm pretty tired the majority of the time. This week I go back to my primary care doctor to determine if I need additional testing or not on my kidneys, liver, and bladder to see if hefty damage was done. They found it odd that with the numbers I initially had and the pain I was in (apparently a Crossfit workout and lacrosse practices coupled with dehydration was what gave me rhabdo), I bounced back so quickly, yet all of the sudden these new symptoms arise. That's my rhabdo story!