A basic introduction to RLS
I think it was in late 1991 when I was at my annual physical when I was first diagnosed with RLS. For several years, beginning at age 18, I had experienced a horrible disruption in my sleep. It began in the summer of 1989, and manifested itself quite suddenly and strongly; I was unable to hold still, and I had a terrible sensation in my left leg...it was a cross between the feeling that my muscles were trying to crawl off of my legs and an itch down on my bones where I couldn't hope to scratch it. There was an absolutely uncontrollable, undeniable urge to stretch and contort my legs in all manner of ways. There was often an all-over itchy feeling; I'd scratch one itch only find another one immediately following on a totally different part of my body. Parts of my body, particularly my leg, foot, and stomach, couldn't bear to be touched. Were they touched, especially very lightly, my leg would violently twitch and an RLS spasm would begin. I tossed, I turned and sometimes, I very nearly lost my mind.
This went on for three years, and it grew worse and worse. Trying sleep aids such as Sleepinol made the condition much worse; I recall literally wanting to die one night after I had taken it in a desperate attempt to fall asleep. There have been many nights when I thought I was going to simply go insane; RLS is nigh-unendurable. The worst part is this: If I think about it at all, the symptoms manifest themselves, or if they're already present, they get worse. It's kind of like saying "don't think about pink elephants;" you thought about them, didn't you? It's hard not to think about something so agonizing. Reading will occasionally help take my mind off the symptoms, and watching TV is a pretty good way to relieve the mental portion of the disorder.
At this annual physical, though, I mentioned it to my doctor at the time. My only thought was that it had something to do with a back injury I had sustained not too long before the onset of symptoms. I described everything to her, and she said "Oh, you have Restless Legs Syndrome." I stared at her for a brief moment and then chuckled. "No, really...what do I have?" She assured me that RLS was a legitimate diagnosis, no matter how silly it might sound. It may sound funny, though it's anything but.
I was relieved that there was a name for my condition, and even more relieved when she prescribed some medication for me. She told me then that it was an anti-seizure drug, but it seems most commonly called a benzodiazepine. The drug is clonazepam, also known as Klonopin. Klonopin made a world of difference to me - usually, it put me to sleep, thankfully. It made an unbearable condition marginally bearable. (Though I now have a different perspective on Klonopin. I stopped taking it a couple of months ago, and have other thoughts about it. When I have time, I'll put up the Klonopin page I had originally planned to write when I put this section up.) It turns out my paternal grandmother and my father both have RLS as well (there is a genetic component to the condition,) although theirs apparently manifests in slightly different ways than mine does.
I've had RLS now for more than 10 years, and it doesn't show signs of getting any better; in fact, there are times when I think it's getting worse. It's now crept up my left side and into my left arm, though not as badly as it is in my left leg. However, I've managed to keep it mostly under control, mainly through drug therapy, since I have yet to find anything else that works successfully. There is a woman, the RLS Rebel, who fights her symptoms entirely without drugs - amazing! I'm incorporating some of her practices into my life, too.
RLS affects my daytime life in some ways, too - when I go out to watch a movie, I frequently have a small onset of symptoms, and if I must sit still in a long meeting, I often experience a small attack. I am absolutely terrified of having my legs confined in any way, for instance in a mummy-style sleeping bag which limits how much I can stretch my legs or spread them out to relieve the crawling feeling. The mere idea of a mummy sleeping bag sends me into mental fits - it's a very stressful idea. It's not easy finding compact, non-mummy bags, so I usually have to compromise on a half-mummy/half-barrel shaped bag, which is only slightly tapered at the foot. They're not the best solution, but they're an acceptable compromise.
Further, I really loathe flying when I'm worried about the RLS kicking in. I don't generally like sleeping in beds with other people, because I'm afraid I'll disturb them if I have to move around a lot, or I'll move less and thereby invite an attack. I worry about it anytime I have to sit still for long periods of time, especially during times when I might get bored, like during meetings, flights, et cetera, and if I worry about it, the symptoms start lurking. There is a large mental component to this condition, which is not to say that it's psychosomatic - nothing could be further from the truth!
RLS is also not a "nuisance" or simple "discomfort;" it is agony. Sufferers cannot simply "wish it away" or "control it," and we're not wimpy little whiners who are overstating something that's not a serious condition; RLS sufferers are out here every night, battling for our very sanity. Some (but not all) of us even occasionally entertain thoughts of suicide to get away from the pain, while others only have very mild symptoms.
There seems (to me) to be a strong correllation between RLS and other disorders, such as depression, Attention Deficit Disorder, and other neuroloical problems, which leads me to believe RLS is related to neurotransmitters, perhaps seratonin specifically. When I was taking 20mg of Paxil (a selective seratonin reuptake inhibitor,) back in 1995, my RLS symptoms vanished almost completely. However, when I took 10mg of Paxil for a few months in 2002, it had no effect on the RLS, and many people say that any anti-depressant makes their RLS worse. When my energy level is low, or if I'm feeling even a little depressed, the RLS acts up more. If I'm happy, the RLS is generally very mild or even absent. When I was going to the gym and swimming every other day for about 6 months, the RLS went almost entirely away. However, for the past year, I haven't been going to the gym at all. Since I haven't been exercising regularly, the symptoms have become worse and worse.
Here then, are some of my experiences with RLS, what works and doesn't work for me, how I cope, and a few links to related websites. RLS is a miserable, lonely disorder - when it's acting up, I feel quite alone in the world, when everyone else is sleeping like people normally do, and I'm trapped in consciousness, no matter how exhausted I might be. Fortunately, I found the RLS-support email list, which gives members a lot of support, advice, and encouragement - mostly, it lets us all know we're not alone, that there are people out there who understand what we're going through (a very frustrating part of RLS is not being able to describe the kind of pain we're having - it almost defies description.) If you know someone who might have this disorder (which is characterized by the symptoms I have described above, as well as by involuntary movements of the limbs while a person is relaxed or sleeping,) please refer them to The RLS Foundation, or to this site, where they may find some solace in knowing they are not alone, or crazy, and that there is treatment available. Some of the information I have on this site is taken from the RLS Foundation's; it's a great place to find out all manner of information about this condition.
While almost all sufferers have very similar symptoms, their individual responses to the various treatments are highly varied; what completely works for one person might amplify another's condition. It's an interesting (although completely frustrating and miserable) situation, trying to figure out what the common underlying themes are.
March 22, 2001
I went to a neurologist Monday and was given a prescription for Neurontin. So far, it's very effective on the RLS symptoms and I'm pleased with it. It does, however, have some adverse effects I will put on a separate page.
Do you have RLS?
Treatments that work for me - Updated 7/02
What makes RLS better/worse? from RLS email group -
new, 7/02
Things that exacerbate my RLS.
My experience with Klonopin
My experience with Neurontin
Things you can do during an RLS "attack"
What to expect from an overnight
sleep study - New, 6/02
More Resources:
RLS Foundation
Dr. Frank Elaty's RLS/PLMD
page
RLS-Support email list
WebMD's RLS
Listing
WebMD's "What
Causes RLS & Who Has It? Page
WebMD's Facts
about RLS
Dopamine agonist info
Opioid info
Benzodiazepine info
Average dosing table
Another page on
medications
Sleep Disorder Channel's
RLS page
Jill's RLS Rebel page
Information on SAM-e
SoCal RLS Support Group
Botox Info (believe it
or not, Botulism is being used as a treatment for some neurological
disorders, as well as cosmetic surgery. Odd.)