My restless heart.

  "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)

Comments

[Scritto da: Amy Wing]

Wow, Chel! You did an excellent job of describing this syndrome - I hope it will help people understand. I'm a physician assistant for my "day job," and I work with mentally ill people. We actually are on the lookout for all kinds of twitchy restless behaviors in our patients because they can signal side effects of antipsychotic medications. Now, I'm not up on all the current research or treatment of RLS, but I can tell you that most antipsychotic medications increase dopamine (schizophrenics tend to have too little dopamine), while anti-Parkinson's medications decrease dopamine (Parkinson's Disease involves too MUCH dopamine). Sometimes, the antipsychotic medication can tip the balance a little too much toward the "Parkinson's" side of the equation, and get side effects we call EPS (extrapyramidal symptoms ). I won't get into why we call it that - it's all tied up in neuroanatomy and usually not at all interesting to laypeople (or even professionals, necessarily). Anyway, EPS involves symptoms like uncontrollable need to move or pace, muscle twitches, facial tics, strange muscular positions, shaking or tremoring, and at worst even stuff like the patients smacking their lips or shooting their tongues out repeatedly (yes, it looks silly).

Sounds like a tangent, I know - but the way we treat these side effects (if we can't lower the antipsychotic medication, of course) is with medication that helps bring the dopamine back into balance.

Does there seem to be any connection between EPS and RLS to you? I think it's obvious there is a dopamine connection there somewhere. Our bodies are finely tuned machines, and some of us are more sensitive to some things, some of us are more inclined to some things, and some of us have brains and other body parts that function differently than others. It's easy to point and laugh at someone who has a condition you don't understand, to minimize it as unimportant or not-possibly-real. Your explanation goes a long way towards educating people that there are things of which they (thankfully) know nothing about, and hopefully it will help remind us not to judge others until we have a bit more information.

You know, on a more entertaining note, this post and my response remind me of a short film written and produced by my good friend Anne Continelli called "Big Talking Heads." You gotta check this out: http://www.youtube.com/watch?v=DH5iFZXsPqI&feature=channel

It's only 7.5 minutes long, and it's totally hilarious! Of course, this has nothing to do with you or RLS. :D

[Scritto da: Donna Cook]

hmmmmm....I keep thinking of many illnesses that "other folks" think are our imagination, it is nice to have validation. I am glad that someone found benefit from the pharmacutical advertising. When they started to market prozac as "sarafem" for premenstrual symptoms, I asked my doctor about it. ( i was already taking prozac, and didn't know that sarafem" was prozac, and they didn't tell you that in the ad) She had internet access, and we looked it up and low and behold, it was prozac, with a new name for a new market, which is cool. but I was really depressed...lol..I already was...but anyway. We then decided I should try hormone replacement therapy, which was WONDERFUL! but then they decided that would kill you, so I stopped it...cold turkey, really dumb, but as time passes the hormones start to balance out on their own, which is great if you don't kill someone in the meantime (lol) I survived and so did everyone else. but I'm always reading those silly magazine articles about some strange syndrome, and then self diagnois. I try to see if symptoms subside before I call the doctor....lol.....

but seriously, that is exactly why the pharmacuticals advertise. sure, they want to make money, but it's also about informing consumers, and there are lots of folks out there that think they just have to put up with stuff, and sometimes you don't. I'm glad you have found some relief. I always love reading your blog!

[Scritto da: Glenda-TwoCoolTexans]

Chel, I am so sorry to hear about your Restless Leg problem. I had symptoms for years and yes, I do understand that you have to just get up and walk the floor until you get so exhausted that you can just fall back to sleep for a while. And, no, advil, etc. does no good. But, I was reading somewhere one day that it could be a symptom of a magnesium deficiency. So, I started taking High Potency Magnesium supplements every day and when I take them, I have zero issues. Sometimes I forget and bam, well, it's there again. Just try it Chel. It's not a drug, it can't hurt you and who knows.

[Scritto da: Chelise]

Thanks for the thoughtful remarks, everyone!

I know I've heard that there is a magnesium / leg cramp correlation. I haven't tried it Glenda, but you make a good case for giving it a go.

: D

xoxo - Chel

[Scritto da: kecia]

well, first of all, i am so sorry to hear about your suffering in silence with your illness for so long. i think now that you have talked about it, you will find many more people (online) who has it or know someone who has it. i didn't realize that there were jokes being made about it on TV and i agree that only adds to the embarrassment. i see nothing funny in the suffering of others. how happy i am to hear that you are finding relief with your medication; congrats to you!

[Scritto da: trace minerals]

Any person experience their sufferings in life sometimes more of a disaster. But i always believe that every step we make is a lesson to learn.