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Old 05-02-2010, 03:34 AM   #1
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Elevated CK, pain all over

I don't know if this is the board I should be posting to, but here goes..

I've been having pain all over my body since the age of 16, and it has been getting progressively worse from the age 20 up. Now I'm almost 22. I also experience other symptoms including difficulty swallowing (my head's gotta be in a certain position or it can be uncomfortable), fatigue, exhaustion, muscle stiffness, depression, anxiety, weight gain, IBS, itchy skin. So at the age of 19 I was diagnosed with a condition called Fibromyalgia, but I personally don't believe it. There's no family history of it, and I actually hurt ALL over, instead of the 18 tender points or whatever. I've also heard that it usually affects middle-aged or older people.

So finally I got to take a bloodtest that would rule out other stuff (they did that once, but it was a long time ago), and this time they actually checked something called "S-CK", I think CK is the short version of it. My result was 347, so it's elevated (should be under 200 cause I'm a woman).

I'm feeling desperate. I don't respond to any medications they usually prescribe for fibromyalgia. I tried changing my diet but it only eased a little for a while. Could I actually have some kind of a muscle disorder even though there's no family history?


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Old 05-02-2010, 07:11 AM   #2
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Re: Elevated CK, pain all over

Well, I have been diagnosed with a neuromuscular disorder (either a Limb-Girdle MD or a Mitochondrial Myopathy) with no family history. My father did have Myasthenia Gravis, but my symptoms are very different from his, plus my tests ruled out MG.

My CK was initially in the 1500's. Over the years we've retested and it's been lower, but I think my last test was around 750, still very high.

Like you, I was initially diagnosed with Fibromyalgia, but the weakness made them start checking further and ultimately found the neuromuscular disease.

If you can get your doctor to start looking more, it might be a good idea.

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