Dealing with Spasticity
Okay, here is my experience with and some solutions to the problem of spasticity, more commonly known as muscle cramping or charlie horses. Other than frozen shoulder syndrome and the recovery from various surgeries, this can be one of the few, albeit annoying, sources of pain suffered by ALS patients. If, like me, you're left in the dark by your neurologist, until it gets to the point where you need medical intervention, fear not, for there are some tricks you can use to make it bearable, or even pain free.
Disclaimer: I am not a medical professional, and the following does not constitute medical advice. Please accept it in the spirit it is offered, and consult with your neurologist before embarking on a program, yada, yada.
1. I learned this one from my wife, who experienced charlie horses during pregnancy with both of our daughters. If you have a charlie horse in your calf, ignore the urge to flex your toes straight out, as this will cause the spasm to set into place, lasting for ten minutes or so. Instead, flex the toes back, and stretch out your calf. Sort of like when you walk on your heels, if that makes sense.
2. If you have already gotten to the point of no return from a cramp, most commonly in your leg or forearm, and you can tolerate it, a deep tissue massage can do wonders. I was never able to tolerate my wife touching me in the midst of a cramp, but there were many times during her pregnancies when she would have me rub out a charlie horse.
3. Onto prevention. Meditation. I don't know how effective this can be because I don't practice it enough, but I imagine that if you can tolerate an hour or so a day, it can't hurt, and there are so many alleged other benefits, that it would seem remiss to not mention it. I do, however, frequently use meditation to deal with that other specter of ALS, the dreaded itch that you can't scratch.
4. And here is the remedy that makes this whole post worth reading in the first place: Magnesium Citrate. A word of caution before you run down to the pharmacy and down a whole bottle of the stuff: It has a warning label on the side that's worth reading, and lists two side effects of note. First, it warns that patients with MG, a disease similar in effect, if not in cause, to ALS, may experience muscle weakness when taking magnesium citrate. Now I know that MG is not comparable to ALS (what I would give to have a healthy case of MG), and the bottle doesn't have a word about the effects on a patient with ALS, but you can't be too careful.
The thing is, patients with ALS have a deficiency of magnesium in their bodies. And it was recommended that I take a daily dose of about 400 milligrams a day, but with no explanation of why. Well, after I felt the experience first hand, and after a bit of research, I was sold. After all, I was suffering terribly from muscle cramps and charlie horses. To such an extent that my neurologist was recommending muscle relaxants to deal with the pain. I believe that botox was one of the options being bantered about.
I experienced a sudden drop in the frequency and severity of the cramping on a daily dose of 400 mg, so I did what any foolish and uninformed young man would do: I tripled the dose.
That facilitated my reading the rest of that warning label: may cause diarrhea.
I'll leave that to your imagination, but suffice to say, I found myself with an incentive to experiment further to discover the right dose. After all, I had beaten the spasticity entirely, at the expense of several hours a day sitting on the pot.
To make a long story short, I tapered down the dose from three teaspoons a day, with 500 milligrams per teaspoon (it comes in a delicious lemon flavored clear liquid that's easier to take and control the dosage than in pill form) over the next few months down to about half a teaspoon about a year later, at which point I stopped taking it entirely.
I haven't needed it for over a year, and have found myself completely free of the painful symptoms of spasticity, other than the occasional sneeze that seizes up my diaphragm. I figure that I've gotten my magnesium to a tolerable level, and I have this in my arsenal of tricks in case the cramps ever come back.
So what works for you? I'd like to hear as well about any tricks or coping mechanisms you've come up with to deal with any of the symptoms of ALS.