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ME/CFS & Muscle Cramps

Posted Jul 22 2010 12:03pm

Last week, muscle cramps suddenly flared up.  Each day, it got worse and worse. I have no idea what triggered it as it had been behaving reasonably well thanks to Akineton .

Dr TL suggested increasing Akineton dose. It successfully stopped the problem. I can still feel the sensation that cramp is coming, but it goes away before developing into cramps. It was “Wow” for me to see the medication worked so quickly and clearly.

Dr TL was also happy that the medication helped very well. Akineton is medication to treat Parkinson’s Disease. We pondered on the medication for “neurological” may have something to do with my cramp. (ME/CFS is said to be neurological condition…)

I started it with low dose (1 mg daily or half tablet), when muscle cramp was problem. Cramps didn’t go away completely, but the medicine helped reducing frequency and severity greatly.

When it was really bad, I couldn’t hold anything without triggering it. Once it happens, my hands and/or affected muscle are unusable. Pain was really bad. The affected muscle locks in to weird figure and I cannot pull it back to the right position. I couldn’t use knife and folk, couldn’t do dishes, couldn’t brush teeth, couldn’t wash myself and hair in the shower, couldn’t rely on walking stick, and I held coffee mug with funny shaped hands and had to push wheelchair with my wrists…

When it gets really bad, it happens without using or moving muscle, even when I’m resting. It happens anywhere; hands, hips, waist, calves, heels, feet, and even neck.

Now, Akineton was increased to 2 mg or one tablet daily.

Just in case, we discussed other possibilities of my muscle cramps. Low blood calcium level could be one of them. My calcium level tend to go low. He tempted to do blood test, but we agreed to wait and see how my cramp problem goes.

It seems like Vitamin D supplement is not helping with calcium level. We are also monitoring parathyroid function as it may be the culprit for low calcium level.

I also take Repalyte for electrolyte supplements and for cramp prevention.

Dr TL asked if muscle cramp is common symptom for ME/CFS. Since not many doctors know about Akineton for muscle cramps, he wondered if my friends may be missing out a possible treatment.

My online friends don’t seem to have this problem, though. (If you do, please let me know.) When I googled about it, some people with ME/CFS seem to have it. So, it can be ME/CFS related symptom.

At the same time I increased Akineton, I started taking prescribed Voltaren for muscle and joint pain. It stopped certain type of muscle pain (tingling pins & needle kind) and joint pain and stiffness are disappeared. Another “Wow” from me.

There is a possibility that the combination of Akineton and Voltaren worked well.

I had a strange muscle pain for few days after increased Akineton and taking Voltaren. It was the kind of pain that we get after exercise. The strange part was that this muscle pain was only on my left side of body and my right side of body was not affected.

Dr TL complimented me for taking control over pain. I explained that I happen to be the lucky one who doesn’t suffer much from pain. It is possible that my pain threshold is high, where many people with ME/CFS tend to have lower pain threshold.

And I tend not to think about pain even when I notice they are there. He called me Samurai as a compliment. LOL. I felt taking the compliment wasn’t fair for those who has serious pain issue where mind power wouldn’t help…

If I had serious pain issue, I would still feel I’m lucky as Dr TL constantly looks out for pain treatments for his patients. And he is not afraid of giving any possible treatment for his patients as long as their safety is proven.

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