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Old 11-07-2006, 08:30 AM   #1
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High CPK --- possibly myositis? Neuro says maybe....

About four weeks ago I had a CPK of 1100 in the hospital. I work out a lot, lift heavy weights, etc. etc. Since then, my CPK has dropped down to 60 on its own simply with flushing with IV fluids and not working out.

Since then, I have had muscle aching. Not a lot of weakness, but my Deltoids and calves seem to ache like they need to be stretched. It doesn't stop me from doing anything I do in day to day life (I can still run, still do cardio, still rollerblade), but the aching is definitely noticeable and quite annoying. To describe it at best, I feel like I REALLY need a good stretching all the time, but when I stretch it doesn't get better.

As far as I know my CPK is back down to normal. I had an EMG which came back slightly abnormal but both neuro's believe that since the EMG was so mildly abnormal, it could be due to my heavy workouts of recent (weightlifting/cardio 4 times per week+).

Could this be a myositis or the beginning of it? No family history of muscle disease.

Regards,

MJ

 
Old 11-07-2006, 12:43 PM   #2
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Re: High CPK --- possibly myositis? Neuro says maybe....

MJ,

I'd consider it good news that your CK level goes back to normal. (Actually I think the normal range is 22-198 give or take a little). Mine is ALWAYS around 500. I have a slow-progression muscular dystrophy. Rapid progression MD can show CK levels of 10,000+ because of the rapidly dying muscle cells leaking CK into the blood. CK leaks into the blood whenever a muscle cell is damaged.

Any weightlifter or athlete can have spikes in their CK level after a workout. Keep an eye on it but don't lose sleep just yet. A healthy person will rebuild muscle cells that have been damaged.

You most probably know this but a myositis is a muscle inflammation, a myopathy is muscle deterioration. I'm not a doctor, just very informed because of my own condition. Best of luck,

Mark

 
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Old 11-07-2006, 12:51 PM   #3
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Re: High CPK --- possibly myositis? Neuro says maybe....

Quote:
Originally Posted by Mark_B_61
MJ,

I'd consider it good news that your CK level goes back to normal. (Actually I think the normal range is 22-198 give or take a little). Mine is ALWAYS around 500. I have a slow-progression muscular dystrophy. Rapid progression MD can show CK levels of 10,000+ because of the rapidly dying muscle cells leaking CK into the blood. CK leaks into the blood whenever a muscle cell is damaged.

Any weightlifter or athlete can have spikes in their CK level after a workout. Keep an eye on it but don't lose sleep just yet. A healthy person will rebuild muscle cells that have been damaged.

You most probably know this but a myositis is a muscle inflammation, a myopathy is muscle deterioration. I'm not a doctor, just very informed because of my own condition. Best of luck,

Mark
Mark,

Thanks for the information. A quick background.

1) I am very anxious. I have been to 10 different combinations of neurologists/rheumatologists/MD's in the past four weeks. My muscle aches have me very concerned. Yes, my CPK has been steadily at normal levels, but I still am experiencing muscle aches. My one MD thinks the muscle aches could be anxiety: that I'm just making myself so anxious that its causing my body to ache. He wants me on anti-anxiety medicine, but it is so hard to believe that all of these muscle aches could be caused by something other than a disease.

2) My one neurologist thinks that I might have something, and wants to do a muscle biopsy, because the EMG came back slightly abnormal. The OTHER neurologist thinks that nothing is wrong, because I have no history of myopathy or dystrophy in my family, and I was healthy and had no muscle cramps until I stopped working out four weeks ago when I went into the hospital for the high CPK.

3) I am paranoid about dieing. I read about all of these dystrophies and myopathies and myositis' and get very scared. Today, my arms are fairly tight (not weak, I can do push ups and such just fine, they are just tight), and so are my legs.

I know that if I DO have something, most of it can be cured and/or helped. I know that my nerve conduction test came back fine (the EMG itself was slightly abnormal, and some of the docs think this could be because of the fact that I work out heavily and could have damaged some muscles, especially since the EMG came back MILDLY abnormal in muscles I regularly work out, such as my deltoid. The main complaint was increased polyphasia).

Anyway, most likely in the end of this all will be OK (god I hope so), but this paranoia throughout this has made me realize that even if I DO have a muscle disease, I also definitely have an anxiety disorder, which I need to get treated. But for now, these muscle aches cause me to remain concerned.

-MJ

 
Old 11-09-2006, 09:22 PM   #4
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Re: High CPK --- possibly myositis? Neuro says maybe....

MJ-

Stop being paranoid because I am sure when you find out exactly what you have, their will be a cure and you will fine. Anxiety can make things worse, so you might have something wrong with you and with anxiety it makes things worse. Good luck.. I am sure you have some type of myositis, but hopefully you are getting a muscle biopsy to see exactly what it is.. Good luck and stop being so paranoid your not going to die.

Summerbabes1984

 
Old 11-29-2006, 06:32 AM   #5
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Re: High CPK --- possibly myositis? Neuro says maybe....

I was diagnosed in May with Polymyositis after my CPK came back at 40,000. I had felt like I overdid a workout for a week (though I hadn't done anything physical) before going to the doctors. I had a muscle biopsy that wasn't 100% conclusive since they had put me on Prednisone BEFORE the biopsy and therefore the inflammation of my muscles had gone down. I've had one minor flare since then where my levels got back up to 1,000 but I did experience what you are taking about in my calves as well as my forearms though my CPK was normal at the time. Not to worry you...the doctors said that a normal person who is very physical can get their CPK up to as high as 1800. I would highly suggest having the biopsy, they can tell you if there is necrosis of the muscle fibers and if you are not on any type of steriod if there is inflammation as well.

Good luck!
Tina

 
Old 12-03-2006, 09:43 PM   #6
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Re: High CPK --- possibly myositis? Neuro says maybe....

hey mj
I have the exact same muscle aces you describe. My deltoids and calves are always tight and no matter how much i stretch it doesnt seem to help. My CPK levels were also high and went down after i took a few weeks of training. My muscles in my back have become so tite like rocks and no massage helps. I dont know what it could be, im going to derm again this week, first time i went he said its just from lifting weeks, few months later its still here. How did you go?

 
Old 01-10-2007, 08:16 PM   #7
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Re: High CPK --- possibly myositis? Neuro says maybe....

MJ,
I have DM, but have found a considerable amount of help with the ache pains after being analyzed for nutritional deficiencies by a Naturalpath physician and a Kineseologist/Chiropractor. Most chiropractors are very well trained in nutrition.
You may just have a mineral deficiency because of working out so much.
It's worth a try...they sure have helped me!!
Jenny

 
Old 01-25-2007, 09:15 AM   #8
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Re: High CPK --- possibly myositis? Neuro says maybe....

MJ,

I hope you don't have anything wrong but I think you might be wise to check it out for the simple reason that early diagnosis is paramount in making your life easier through treatment. I am going through much the smae thing even though my situation is very different. I have yet to have a confirmed diagnosis, but they think I have PM.

You can;t worry away anything. Instead, do your research so that you are armed with knowledge. You need to be a part of your treatment team. The best way to defaet your enemy is to get to know it. But you also need to step back and think that no matter what, your worrying is not going to make a positive difference, in fact, it will make things worse.

GL, we will keep you in our prayers.

Hugs,

~Dharlee

 
Old 12-06-2008, 07:58 AM   #9
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Re: High CPK --- possibly myositis? Neuro says maybe....

Have you had a thyroid test done?

 
Old 12-06-2008, 01:05 PM   #10
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Re: High CPK --- possibly myositis? Neuro says maybe....

Quote:
Originally Posted by manlyman View Post
About four weeks ago I had a CPK of 1100 in the hospital. I work out a lot, lift heavy weights, etc. etc. Since then, my CPK has dropped down to 60 on its own simply with flushing with IV fluids and not working out.
----------

I don't understand. Are you saying that you first became ill 4 weeks ago? Has there been symptoms prior to this? Can you point to an approximate date when you began to feel ill, if prior to 4 weeks ago?

Last edited by duncan1; 12-06-2008 at 01:06 PM.

 
Old 12-07-2008, 06:09 PM   #11
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Re: High CPK --- possibly myositis? Neuro says maybe....

student99: I had my TSH checked and it was normal. Are there other tests I should have done?

duncan1: This problem all started November 2006. Still get the twitches, weakness, etc., but doesn't seem to have progressed. But now, I also have really bad floaters in my right eye (so I see them even when not looking at a white screen or sky), and bad tinnitus in my right ear as well.

 
Old 12-07-2008, 06:26 PM   #12
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Re: High CPK --- possibly myositis? Neuro says maybe....

Quote:
Originally Posted by manlyman View Post
student99: I had my TSH checked and it was normal. Are there other tests I should have done?

duncan1: This problem all started November 2006. Still get the twitches, weakness, etc., but doesn't seem to have progressed. But now, I also have really bad floaters in my right eye (so I see them even when not looking at a white screen or sky), and bad tinnitus in my right ear as well.
I get/got tinnitus as well and vision problems and muscle aches and twitches but no localized muscle loss that couldn't be explain from a reduction in exercise. It kinda sounds like Lyme Disease to me but it could be something else. Tinnitus suggests neuro involvement. Have you been tested? Any tick bites?

I am really suspicious of myositis as a spontaneously occurring autoimmune disease. In most cases it looks like an infection and the prior history usually suggests a starting point which is what you would expect from infection. In my case Lyme Disease triggered the symptoms and my CK only went high once. I would suggest that you request a month of minocycline to see what happens, if all else fails. The problem with myositis is that if there is an underlying infection, then suppressing the immune system is not a good idea.

 
Old 12-07-2008, 06:30 PM   #13
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Re: High CPK --- possibly myositis? Neuro says maybe....

Quote:
Originally Posted by duncan1 View Post
I get/got tinnitus as well and vision problems and muscle aches and twitches but no localized muscle loss that couldn't be explain from a reduction in exercise. It kinda sounds like Lyme Disease to me but it could be something else. Tinnitus suggests neuro involvement. Have you been tested? Any tick bites?

I am really suspicious of myositis as a spontaneously occurring autoimmune disease. In most cases it looks like an infection and the prior history usually suggests a starting point which is what you would expect from infection. In my case Lyme Disease triggered the symptoms and my CK only went high once. I would suggest that you request a month of minocycline to see what happens, if all else fails. The problem with myositis is that if there is an underlying infection, then suppressing the immune system is not a good idea.
What is minocycline? My mother's doctor is convinced that she has an autoimmune disease, but has never been able to pinpoint it. Perhaps I have something similar?

My neurologist did an EMG and a nerve conduction study. The latter was fine but the EMG came up "dirty". They did a few more and yet again they came up "Dirty". No real cause though, and I haven't had anymore weakness in two years --- though my feet fall asleep all the time, etc - random things like that. Neuro wanted to do a muscle biopsy "just in case" but we never did.

 
Old 12-07-2008, 08:33 PM   #14
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Re: High CPK --- possibly myositis? Neuro says maybe....

Minocycline is an antibiotic. One way (maybe the only way) to test the infection theory is a trial course of an antibiotic, like minocycline or doxycycline that is effective against Lyme and other bacterial infections, and see what happens. Minocycline is pretty mild in its side effects.

 
Old 12-08-2008, 09:24 AM   #15
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Re: High CPK --- possibly myositis? Neuro says maybe....

Quote:
Originally Posted by duncan1 View Post
Minocycline is an antibiotic. One way (maybe the only way) to test the infection theory is a trial course of an antibiotic, like minocycline or doxycycline that is effective against Lyme and other bacterial infections, and see what happens. Minocycline is pretty mild in its side effects.
Are these antibiotics you take forever? Or just in the beginning?

 
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