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Cramp Fasciculation Syndrome - non shin splint shin pain

Posted by eagle4031 @eagle4031, Dec 13, 2024

I was diagnosed with Cramp Fasciculation Syndrome in 2012 at Mayo. I’ve tried every possible medication, apple cider vinegar type remedies etc., with unfortunately no relief. I hope some of you have found relief.

I stopped taking all drugs simply because they couldn’t fix this or make me feel much better.

I’ve learned to live with this quite well however it does continue to get worse. My Fasiculation are 24/7 on both legs, stress makes them worse. I have very little feeling in the bottoms of my feet. Pain only happens in my feet if I am in an uneven surface like a sandy beach….weird for sure. Cramps are horrible at times. Stress makes them worse too. I did have a custom bed built strong enough to push on at night vs flying out of bed to stop a cramp. It works for 50% of the cramps. Others are in weird hard to fix spots.

But my real question is this. I have bad pain on the right and left side of my shin bone and today my knee surgeon said it is not shin splints and he is puzzled with what it could be.

I’m wondering if anyone has experienced this symptom? Has anyone had Periostitis? Or other non shin splint shin pain?

Thanks so much……

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tim6580 | @tim6580 | Dec 14, 2024

I was diagnosed with CFS in 1980 having several cramps a day in legs, feet and hands. Unfortunately, as I've gotten older, the cramps are in several muscle groups including abdomin and diaphram (very scary as its very hard to breathe and needed to go to hospital. Also, at 68 years old, I now have several cramps per hour. I have tried several medications prescribed by my neurologist but while not reducing the cramps, I became very depressed and, therefore, stopped taking them. The only meds that had any effect was quinine sulphate. While it appeared to stop the cramping if I regularly took the meds but if I did take them for, say, a week, then missed a day, I'd get a week's worth of cramps in one session. Choosing to deal with the cramps, one at a time, I stopped taking the meds. (Quinine sulphate is no longer prescibed in Australia.)
An interesting point, CFS is not supposed to be genetic related but both my sons (from different mothers) appear to suffer from it but not my daughters. Go figure! Subsequently, my neurologist is enlisted me for DNA research.
as for shin pains, yes, I have them on a semi regular basis being the tibialis anterior muscles. Just another muscle cramp.

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nana120 | @nana120 | Dec 14, 2024

I have had shin pain on the front lower part of both legs for many years, but no medical practitioner has been able to offer me an explanation or treatment to relieve them.

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alexsigrist | @alexsigrist | 2 days ago

I was diagnosed in 2022 with CFS after nearly a decade of symptoms and after starting down an intensive neurology rabbit hole at the beginning of 2020. I have also had cramps in the shin but unlike the other commenter my cramps were in the peroneus/fibularis (same muscles, depends on who you ask what they call it) which is on the outer side of the shin bone (the tibia) rather than over it like the tibialis anterior is. For me it is also just another muscle cramp although in a particularly unpleasant location for relief as there aren't great stretches for it and manual stimulation is difficult in that region. Manual stimulation with OTC pain creams (just menthol/camphor is helpful but I've also found extra relief with cannabinoids in them as well) has been my best bet for that.

FWIW my case is nearly identical to a case report entitled CRAMPT syndrome as a particular genetic variant of CFS so I think some evidence has emerged of a cluster of genetic cases in addition to the autoimmune and paraneoplastic causes already offered.

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