You Don't Believe Me?

How many times have each of us faced people (and yes, doctors) who say that Restless Legs Syndrome doesn't exist? It's just something either the pharmaceutical companies made up to make money, or that we have made up to gain sympathy? Well check this out; RLS symptoms have been around since, oh, about 1672, when Sir Thomas Willis gave this description:

Instructions for curing the Watching evil:
.......Wherefore to some, when being in bed they betake themselves to sleep, presently in the arms and legs. Leaping and contractions of the tendons and so great a restlessness and tossing of the members ensure, that the diseased are no more able to sleep, than if they were in the place of the greatest torture...

Sound familiar? 1672 was just a little bit before modern-day pharmacy companies. Besides, most of us have lived with this demon since way before the current medications were even thought about.

But just in case people still doubt you, here is a listing of others who believe in RLS/WED:

Mayo Clinic
National Institute of Health
National Institute of Neurological Disorders and Stroke
National Center on Sleep Research
American Heart Association
National Stroke Association
Vascular Disease Association
National Sleep Foundation

There are some big guns there; credible organizations that realize the truth--RLS is serious. It affects not only our sleep but our overall health. It is validating to know that we ARE being taken seriously, at least in some major areas. Of course, there will always be intellectually-challenged people (i.e. really dumb) who won't believe that RLS exists no matter what proof they are given. But arm yourself with this list the next time someone from the medical profession brushes you off and see if it makes a difference. It certainly can't hurt and it just might help!

Desperation

If you have been on the RLS Facebook site much at all, you will see so many (too many) people who are desperate for relief. They can't find a medication that works, or that works for long. They can't find a doctor who will work with them. The desperation is clear in what they have to say and for most of us reading those posts, we understand exactly what they are going through.

If I had a magic wand, all these problems would disappear in a sprinkling of fairy dust. Alas, I cannot help you that way; but I would like to pass on an idea that might help.

Several times I have asked people to keep a "sleep" diary. What did they eat, drink, or do that day and how did they sleep that night? The purpose was to find reasons that might trigger a bad night. Making lifestyle changes is the first step in gaining control over RLS/WED.

Now, here's the usual scenario when you visit your doctor. You tell them you sleep only a few hours (if that) a night. You explain your symptoms, remind them of what you have and how bad you feel the next day. The doctor makes a few polite noises, writes something in your file and little if anything gets done. Even the best doctors seldom understand how bad RLS/WED is.

So here is what I propose: keep a "This Is My Life" journal to take with you to your next doctor visit. Here is a minimum of what it should include--
1) A list of every doctor you have seen for RLS/WED and related items (with specific dates if possible).
2) What each doctor suggested or prescribed.
3) What worked and what didn't.
4) A list of every medication tried, dosage, how long you used and if it was helpful or not.
5) A list of every over-the-counter, herbal or natural treatment tried and how it worked.
6) A list of every test or treatment done and the results.
And the most important items of all--
7) A true listing every night of when you went to bed, when you got up, how long you were up, what you did, when you tried going back to bed, etc.
8) How you functioned the next day--how was your life impacted socially, at work, physically, in every way possible.

I'm sure you can think of other items to add to this. The point is that a doctor will take you much more seriously if you have taken the time to keep a log like this. It shows that you are not exaggerating the problem and just what medications, treatments or tests have been done. It helps clarify the problem for him and a copy should be kept in your file with every doctor you see.

However, it is very important to keep this log factual and emotion-free. This is for his study and information. The time for emotion is face-to-face when talking about how this affects your quality of life, AFTER he has looked through your log.

Is this a guarantee that your doctor will pay attention and take you seriously? No. But it could make a big difference in helping you find relief. That's the bottom line here, isn't it? If nothing else, it will give you something concrete and beneficial to do when you face those sleepless nights.

Keep reading and posting comments. Just knowing that we are not alone is a huge help in this fight.

Moon and Stars,
Kathy