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Re: Elevated cpk
Dec 13, 2009
Hi do either one of you have problems with chewing or swallowing during your times of muscle weakness? I have been having transient episodes of 3 days to 2 weeks at a time of intense weakness of my arms and legs and feeling of complete exhaustion. My cpk levels were checked and were elevated. Rechecked in 2 months back to normal, rechecked again in 2 months and elevated. Right now we are just testing. I have fibromyalgia, full body arthritis, burned out Graves disease, and a closed head injury. Having multiple issues makes it a challenge for my neurologist and rheumatologist to pinpoint all the other symptoms I have. The "easy" answer for my gp is to say it is all immune dysfunction or fibromyalgia. Hope ya'll are doing good.
Re: Elevated cpk
Dec 15, 2009
Hi mimgregg -

Weakness swallowing can occur with PM and DM, but my understanding is normally only in very severe cases, or towards the end of long chronic illness. (I'm afraid to ask how long "long" is.) And weakness chewing must occur too, but for some reason they don't mention it (like trouble controlling the bowels isn't mentioned).

From the medical articles I've read, it is the pattern of weakness, which muscles and whether or not both sides of the body are affected, that is the preliminary diagnostic indicator.

Then they do an EMG test, and if the EMG test doesn't show another disease, and does fit with PM or DM, they order up a biopsy.

The definitive thing with PM is the muscle biopsy and with DM the muscle or skin biopsy.

Of course just because something is rare doesn't mean it can't happen. My DM affects my tongue, sometimes makes it grow wider (left to right) so I find myself biting it when I talk or eat.

It goes away with the same treatments as make the rest of my DM go away.

My rheumatologist said the tongue couldn't be affected, so I went looking in google for medical journal articles, and I found one case where MDs confirmed PM damage in a man's tongue with an MRI and muscle biopsy.

Does fibromyalgia affect CK levels? It might if it lead to a fall, or lead you to strain your muscles really hard. (Over-exercising and injuries drive up CK levels too. But then the CK levels start going back down on their own in a few days or a couple of weeks.)

Hopefully your autoimmune problems are in a family that all respond to the same sorts of drugs. But who knows.

Good luck.

Post back or message me how you're doing when you find out more.

- Keith

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