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Rhabdomyolysis
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Hello everyone,
I recently was treated in hospital for having Rhabdomyolysis, my stay was for about 9days and I have now been out of hospital about 3wks.
But.... I have a bit of a worry it has recurred and I have it again.
Sunday I went out for my first run since being out of hospital, it went well but I certainly felt it and it kind of hurt a little. Also, I work 7miles away, and my only method of transport is to cycle to & from work everyday, but the last two days I have had the constant pain & weakness in my legs I felt before when I was first diagnosed with Rhabdomyolysis.
I am only posting this on here as I just don't want to rush by ringing hospital and be back in again, I have a job to attend to, money to earn and a family to look after, the last thing I want is to be back in hospital.
any help/advice would be greatly appreciated,
thank you.
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Comments
Ring your GP/ NHS Direct/ the hospital.
It's going to be tricky to attend to your job, earn money and look after your family with fried kidneys. You need advice from someone who can look at your records and blood tests.
(Out of interest... what was the inciting cause?)
Yeah, would back flyaway on this. A case of rhabdo puts a lot of pressure on your kidneys as the body filters out all the evil the muscles are giving off.
I understand your plight, but this one is far too serious for these message boards, this is something you need to talk to a Dr about.
Hopefully not all as it seems
Ok, thank you.
I do agree, I should probably ring the doctor, but being male & stubborn I thought I'd hold it out.
I shall ring the consultant that dealt with me a the hospital on my lunch and see what he says. Most likely the result will be to go in & have my CK levels tested as previously they were at 26000.
Thanks again.
26000?? That isn't a misprint, is it? 2600 would be high but not critical - 26000 is through the ceiling. In fact that could have been fatal.
You need a whole range of blood tests for kidney function. Have you been having them since you came out of hospital?
Were you completely immobile by the end? Was there talk about having or getting compartment syndrome?
I wouldn't do any exercise using your affected muscles at all until your blood tests are completely normal.
How is your weight? Are you back to pre-race levels? You must have been on a drip for a very long time and it is very easy to over-hydrate and have a lot of fluid to get rid of. The strain on your kidneys through all this is extreme and your electrolytes will be all over the place.
I have just got over my case of rhabdo - my second in less than two years - each time with CK of about 2300. My output was not being measured in hospital and I found when I came home I had put on 11kg since pre-race two days before, which took four days to come off.
This time it was on the Thames Path 100, the other was during the Ridgeway 85. On account of this serious condition that I now seem susceptible to I am having to re-think my running and will now only do ultras up to about 50 miles.
It is a sad fact that once you have had it once the chance of having it again is more likely.
As others have said this is very serious. You would earn even less if you had to be on kidney dialysis machines, so I'd do something about it immediately.
Hi T Rex,
That was NOT a misprint.. 26000 was my CK level, you wouldn't believe the pain and how uncomfortable it was.
I've been having bloods & urine tests since being out of hospital, but funnily enough I couldn't make last weeks as I had a day out with work.
I was completely immobile, it was horrible, also my kidneys had started to fail & also my liver to, I was on drips & god knows what else, you name it, I had it! I was like a guinea pig in a test lab.
Yes, they did mention compartment syndrome and I think that was a big worry, there is still a chance I could have it now as this has spread to my calfs as well as being all over my thighs.
It is quite scary in a way I suppose, but I have spoke to my consultant and now on my way to hospital.
Sorry if I haven't answered all your questions, throw more at me if you like
Hope you recover fully & well T Rex.
Thank you.
Any idea what caused it?
What were the early signs/symptoms?
The main symptoms were excruciating pain in the thighs, could barely stand & if I was stood and went to turn I wouldn't have the support in my knees and I'd fall over. The muscles were so weak, felt very sick & the most prominent symptom was the blood in the urine.. It was extremely dark. Like coca cola.
Sounds pretty scary stuff, I hope all will be well
No other reason to post other than to wish you luck and extend hugs. That sounds like a right shit of a time. I will also stop moaning about niggles from now on! You get yourself sorted asap. (((()))))))
Hi again BenltsMeee.
I would believe the pain. Sounds like you tried to carry on way beyond the point a normal person would stop! I did the same for 20 miles until 2 miles from finishing an 85-mile race I had to stop. I had no option - the right leg had become as if paralysed. I got to the point where I was using my hands to lift under my hamstrings and manually moving the leg for 10 steps at a time and then having a 5-minute break, before doing another 10 'steps'. Eventually even this became too painful and I had to call to be rescued.
Yes, the liver can start to struggle and the heart as well. You had a bad bout of it.
It's not blood in your urine, but an enzyme myoglobin which can crystallize in the tubes in the kidneys and cause renal failure. You need to check there is no myoglobin left in your urine and that your CK level has come back down to a more normal level. The normal upper limit for an adult male is 170-190.
Compartment syndrome comes on rapidly so I think you're OK there. The muscles become extremely swollen and tight and the only solution is to slit the muscle sheaf longitudinally to relieve the pressure. The wound is left open.
Take it easy!
What race were you doing?
SideBurn - it's a kind of extreme muscle fatigue from excessive use which seems to affect some people in long ultras. Creatine-Kinase (CK) levels (essentially a measure of dead muscle tissue in the blood) probably get raised in most people who run marathons and longer with no obvious ill-effects.
In serious cases muscle damage is so severe the pain becomes extreme, rather like deep-seated cramp which cannot be relieved by either massage or stretching out. You also start losing motor control in the affected limb(s) until you become completely immobile. These are the obvious symptoms. If you notice your wee colour and it is like black tea or coke that's another clear indication you need to get to A&E urgently and go on a drip.
Good, well-prepared runners can get it. Novices can get it. A lot depends on how conditioned you are and (I think) how tired you are before you start running. Not sure how to prevent it. I'd like to know myself. I like to think I am in the well-prepared category but this has caught me out. I've decided no more 100-milers for me and will stick to a maximum of about 50 miles over which distance I have had no symptoms.
Keep posting, BenItsMeee.
What were you doing the day before and day of, the symptoms starting? Heavy training/ big race/ lots of physical activity (heavy gardening/ digging a ditch/ moving house)? You must have been doing something physical?
Weird.
Are you generally fit? 18 miles isnt a long way for you to ride is it?
Did they do any investigation into the cause in hospital - for example, did you have a PET scan or CT scan or any muscle biopsies?
That is unusual. One of the causes of rhabdo is extreme exertion but what you're describing wasn't that (unless that evening run was epic). There must be some underlying cause.
Hope you get to the bottom of it!
How are you now? Were you on any medication before it started? Statins and vibrates (to lower cholesterol) can increase the risk. Hope you're ok. **sorry, edit vibrates to FIBRATES** Autocorrect can be a pain
Firstly thank you to everyone for your help, concern and advice!
So after the spell in hospital with the Rhabdomyolisis, I was released and had many follow up appointments, constant blood tests etc.
I ended up being referred to a specialist in Bath RUH and also Bath Hospital of Reauhmatic diseases. I had numerous tests and then came along the pressure test. A pressure test is to test compartmental pressures with a canula inserted into the muscle, they test pressure at rest, pressure whilst running on the treadmill for around 10 minutes and then pressure after the run measuring how long it takes for the pressure to go down back to normal/resting pressure.
In my case it was the anterior and posterior compartments of both lower legs that were tested.
Instantly once all wired up to the machine with canula in, my pressures of both anterior and posterior compartments were unnaturally high, then I had to run for a few minutes, posterior pressure was considerably raised whilst running and took longer than normal to release pressure once stopped.
Anterior pressures... Well.. It was ridiculous, my anterior pressure was extremely high at rest, once I was told to run on the treadmill it raised considerably, dangerously high, I was actually told to stop running after 3 1/2 minutes. Then through the rest it took just over 45 minutes for my pressures in the anterior muscle Compartment to go back to rest.
So that was my diagnosis.. I had a pretty extreme case of CHRONIC EXERTIONAL COMPARTMENT SYNDROME.
Since then I had a few more tests and was also put on the list that day for surgery on the anterior compartments, surgery is known as a FASCIOTOMY.
I waited 7 months for surgery, and the surgery was performed on 03 Febraury 2015.
The surgery itself and healing time... Well, honestly, it was a bitch! It was agony and not fun what so ever. Full bed rest for 14 days, then very small baby steps round the house for about another 2 weeks then gradually doing more week by week.
I'm now 8/9 weeks post surgery and walking fine, still in the healing process but feeling better. My left leg feels fantastic, feels better than ever, right leg however isn't so great, I'm on some anti bios for an infection inside the muscle and they're unsure if the operation has worked on that leg.
I have an appointment tomorrow and fingers crossed I'll get some good news, otherwise it's more surgery! -_-
Anyway, so that's my story and I hope no one ever had to experience what I have because it's truly agonising and a horrible experience.
Apologies it's an absolute essay, but instead of telling you all in bits I thought I'd get it all out the way!
If anyone has any questions or anything at all, feels they may be in the same boat etc. please don't hesitate to message me or comment hear, no message is to personal!
All the best,
Ben
Thank you for the update, it certainly puts my -five whole weeks- off running into perspective
I am pleased to hear you are on the mend, good luck!