“I've myself been crucified a hundred times and more by those institutional drugs that are for some sinister reason called "tranquilizers." They are phenothiazone drugs, and include Mellaril, Thorazine, Stelazine, Haldol. Prolixin is the worst I've ever experienced. One injection lasts for two weeks. Every two weeks, you receive an injection. These drugs, in this family, do not calm or sedate the nerves. They attack. They attack from so deep inside you, you cannot locate the source of the pain. The drugs turn your nerves upon yourself. Against your will, your resistance, your resolve are directed at your own tissues, your own muscles, reflexes, etc. These drugs are designed to render you so totally involved with yourself physically that all you can do is concentrate your entire being on holding yourself together.”

--Jack Henry Abbott, In the Belly of the Beast
 
Jack Henry Abbott wrote these words in prison, to describe a side effect of antipsychotic medication called “akathisia”. From the ancient Greek, “akathisia” means “without sitting.”

But Mr. Abbott could easily have been describing what it's like to suffer from severe Restless Legs Syndrome.

RLS runs in families. My mother has it, my father doesn't. I first experienced RLS at age 10, but back then it was only once in awhile. I believe I first brought it up to our family doctor at age 12, and either because he had not heard of RLS or did not know how to treat it, I was told it was all in my head.

That was thirty-four years ago, and many doctors still express the view that the experience of restless legs syndrome is exaggerated, by their patients and by the manufacturers of drugs used to treat it.

But anyone who suffers even occasional or mild bouts can tell you, this particular form of aggravation is as difficult to exaggerate as it is to describe. And perhaps not in all, but in many cases, mine included, it gets worse over time.

Thankfully, there are now at least two medications I'm aware of which bring relief, both of them, interestingly, used primarily in the treatment of Parkinson's disease: Requip (ropinirole) and Mirapex (pramipexole). Television ads for Requip first appeared in 2005, and with them came a barrage of jokes from late-night comics. And I suppose having “restless legs” doesn't sound so very bad.

Personally, I call it hell.

RLS is diagnosed as being either mild, moderate or severe, and granted, mine's severe. But I wouldn't wish even a mild case on anyone. Not even those late-night comics. Having experienced both akathisia and restless legs syndrome, it's hard to say which is worse, but I can say, and if Mr. Abbott were still alive I'm sure he would agree, that akathisia is much like the unrelenting, indescribable, creepy-crawly, tingling feeling of RLS, with the exception that akathisia is felt, everywhere.

Where I live, there is man named David, and because of the de-institutionalization of mental hospitals that began in the early to mid-seventies, probably there is a David, if not many, where you live as well. David is homeless and walks wherever he needs to go, and in spite of the fact there aren't that many places David has to be, he walks.

He walks because he can't sit still.

Like so many homeless people, David is one of the casualties of de-institutionalization, but akathisia-wise, David suffers whether he's in the hospital or not. He can rattle off a long list of antipsychotic medications he's been on over the years, plus the ones given to overcome the side effects—such as akathisia—of the antipsychotic drugs.

Those drugs, like Cogentin and Artane, have their own side effects of course, including ones which mimic acute psychosis.

So 'round and 'round it goes, and periodically David winds up in the pokie for some slight infraction committed while off his medication. Like Jack Henry Abbott, David receives injections every two weeks. At least he's supposed to. What keeps him (and so many, many others) from being compliant with that regimen is not his mental illness; voices in his head have not distracted him, or made him forget.

David is all too aware it's time for another needle full of Haldol, or Risperdal, or whatever the latest breakthrough concoction is.
But rather than having antipsychotic medicine coursing through his veins 24/7, 365 days a year, David would rather go to jail now and then.

Because akathisia is hell.

So is RLS, to which it's closely related, and though akathisia is symptomatically similar to Parkinson's disease, and RLS is a symptom of both—when I ask him, David has never heard of Requip. Or Mirapex.

I realize it doesn't necessarily mean they're related, just because the symptoms are similar. But I've also found relatively little serious discussion, or literature, on the matter. From what I'm able to discern, the anti-Parkinson's medicine I take four times a day, indeed must take and without which I'm deathly afraid I'd wind up even worse off than my homeless friend, apparently isn't even offered, to David.

It makes no difference to me personally if every comedian in the country wants to poke a bit of fun at this condition with the ridiculous name, Restless Legs Syndrome. And I am not a doctor. Perhaps there is some good reason these drugs aren't being offered to akathisia-sufferers that I've just not been able to find.

What I do know is, the newer antipsychotic medications, Risperdal and Zyprexa and Seroquel, have just as many horrible side effects as the older ones if not more.  Aside from the unrelenting restlessness of akathisia, the side effects include weight gain to the point of obesity, and diabetes. One gentlemen I'm acquainted with had his foot amputated as a result of Zyprexa-induced diabetes.

And he's still on anti-psychotic medication. So for his sake, I hope Restless Legs Syndrome isn't one of the side effects he suffers.