"I cannot sleep - great joy is as restless as great sorrow” -Fanny Burney
So, a couple days ago I was having lunch with Marc, one of my best friends in the whole world, and somehow - while discussing the woes of the state of healthcare in this country, we got on the topic of medication, and I mentioned that I take Mirapex every day.
Mirapex, is a drug that was developed to treat Parkinson's Disease. But let's not get ahead of ourselves.
What was interesting about this conversation was the fact that Marc, had no idea that I had the condition that the Mirapex is treating. It's not Parkinson's. It is actually treating a condition I have had since early childhood.
For years, I had no idea what the condition was. In high school - the severity increased and I spent time in and out of doctor's offices and labs as they tested me for things like Rheumatoid Arthritis and Lupus - trying to figure out what the problem was. Luckily, neither diagnosis fit.
Finally, in my early 20s, a doctor suggested that I had mild arthritis. But the diagnosis never felt right to me. First of all, I'd had this condition for as long as I could remember - and there was no swelling or other tell-tale arthritis symptoms. Next, the issue was not necessarily with my joints. It was all encompassing - often in my muscles directly.
Ok, let's back up. Let's me try to describe to you what I was describing to the doctors:
"The problem is, I can't sleep two or three nights a week - because of pain, mostly in my legs.
Well, maybe pain is not the right word. It is more like, twitching, or cramping - that happens over and over and over again. Rather than being painful - it feels... incredibly, overwhelmingly, distressingly ANNOYING.
When it happens, it goes on and on - this twitching and cramping - for hours. And it is literally impossible to keep my legs still.
It happens mostly in my calves, and ankles. But I also have the same sensations in my elbows and shoulders on occassion.
Pain killers don't work. Exercise during the day doesn't seem to have any impact on the duration or severity.
The ONLY thing that provides any relief at all, is to stand up and walk around. Which is fine, during the day, if you are well rested. And not in a car, or a movie, or in an airplane, or at a conference or in class or in a meeting... OR... sigh..."
The symptoms increased in my early 20s. My boyfriend at the time was well accustomed to our TV watching routine. He at one end of the couch, me at the other, laying lengthwise with my feet in his lap. His job was too hold my foot and roll it at the ankle for as long as he could. This was pretty much the only way I could sit still for any length of time.
A few years later, when I married - my husband was the first to point out to me - that my legs kicked and twitched in bed all night long. Even when I was sleeping.
That marriage didn't last. (Hopefully, not because of my twitching legs!) And now I am re-married.
My husband today is less "observational" and more pragmatic about the issue. At least once or twice a week he pushes me awake in the middle of the night. "Sorry hon, too much twitching." And, off to the couch I go. Why should we both lose sleep over this?
SO, given all of the above, I want you to imagine how I felt, when several years ago advertisments on television begain airing - describing what seemed to be a new condition, called "Restless Leg Syndrome." What was particularly striking to me about the description they provided, was the "lack of description." The impossibility to put this into words. "Sufferers describe a twitching, tugging, pulling in their legs. Some describe it as ants running up and down their muscles."
Well, I'll tell you how I reacted - I was totally and completely amazed. THAT IS IT~! That is IT! Not only had they come up with a diagnosis and treatment, but I was NOT the only one with this condition. WOW.
I've only ever met one (ONE) other person who has this condition. It was the brother of a neighbor who I met casually at a dinner party. We had very little if nothing in common and for some reason he mentioned the fact that he had RLS and I about passed out. ME TOO! Suddenly you would have thought we were long lost siblings. My husband finally dragged me away and pointed out that I was not allowed to leave him for someone else based on the sole criteria that the other person's legs twitched uncontrollably.
So, this brings us to the Mirapex. This is the medication I take to treat my RLS. Does it help? Yes, immensely - and for the first time ever. Is my RLS gone? No. Not by a long shot. But the episodes are shorter (15 minutes as opposed to 3+ hours). And I have several days of no RLS symptoms between the days that I experience them - and that ratio used to be the other way around.
And THIS brings us back to the beginning of this post, and the point of the post. WHY didn't my friend Marc know that I had RLS?
Because I don't talk about it. Because, it is - embarrassing. Why? Because it is such a vague and rare condition. When those RLS commercials started airing, so did the jokes. Leno, Letterman, and more. What could be a more ridiculous name for a condition. "Restless Leg." Puhleaz. Don't we all shake our legs now and again?
And then the outright editorials. This was the end all proof that pharmaceutical companies were out to trick us into thinking we had a disease that needed medication. Making us think that our jiggling our legs around here and there meant we had a "condition."
And when all this criticism began, I understood. I understood on a rational level how silly it sounded. I understood on an intellectual level, the fear that pharmaceutical companies would happily medicate anything the consumer would pay for. And most close to home on a personal level - I UNDERSTOOD that most people had no idea that this condition actually existed, so certainly they would be skeptical of its sudden debut as a treatable disease.
So, admittedly, it is not a great shame I hiding. It's mostly something I don't talk about, because it is so often misunderstood and the subject of so much ridicule. Last year, researchers identified a gene that was linked to the condition - providing tremendous validation - that this condition exists - to those of us suffering. THAT got a lot of press. Sigh. Not.
Part of the problem, to me - in terms of people understanding that this condition really exists - is that everyone has a "restless" leg every now and again. Because of nerves, or exhaustion, or whatever. We all have had someone put their hand on our knee when we were shaking our leg to remind us that we were doing it, and that we should stop. So, everyone having had that experience - assumes that this is the same thing as RLS.
Well, let me clarify. If you haven't screamed into your pillow because of your restless legs - and sobbed in the middle of the night from sheer exhaustion and the inability to control twitching because of your restless legs, and likely - more than once, desperately sought medical help because of your restless legs - then you have absolutely no idea what this condition is like, for those of us who suffer.
If you watched those commercials and thought to yourself: "This has got to be the stupidest thing I have ever seen!" - then you have absolutely no idea what this condition is like.
So. I am out of the closet. I have RLS. In an annoying twist of irony - last year I was diagnosed with actual (mild) arthritis in my feet. It was a whole different thing, and ironically - the arthritis is aggravated by the RLS, and equally ironic, the arthritis is no where near as annoying as the RLS.
I'll end this post with the following: RLS, in my case - is not excruciating. It is excruciatingly annoying. RLS is not crippling, fatal, or even visible to the outside world. As for chronic conditions with no cure (as of yet) - I lucked out with this one. I in no way want pity (I mean truly, it is not that kind of thing). I just wish I could talk about the fact that I have RLS without having people outright laugh, or think I have jumped on the phantom-psychological-symptom bandwagon.
Anyone else out there dealing with this condition? I'd love to hear from you.
And to all, I wish you peace enough to soothe any restlessness you may feel today, be it in your heart, soul, OR legs!
(Oh, and want to learn more? Try www.RLS.org)