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

Blessings

No matter your religious beliefs and holiday practices (or lack thereof); this seems to be a season of reflection for many people. 2011 is drawing to a close and as with most years, it has been a mixed bag of accomplishments and memories. I feel that I have accomplished a lot, both personally and with the Foundation but there is still so much left undone.

We aren’t where we want to be in the matter of RLS/WED. There still is a huge need for better medications, more understanding doctors and most importantly of all—there still is no cure. We often focus on the negative side when it comes to this disorder and that is completely understandable. Even if we go through a period where our RLS/WED is mostly under control and we are getting some rest, we know that it is unlikely to stay that way.

However, this blog is going to be about blessings. “Blessings”, according to Webster are “things conducive to happiness or welfare.” So in the case of RLS/WED, here are a few of my blessings to share with you.

1. I know what I have and how to deal with it. It wasn’t that long ago that I had no idea what was wrong with me. I was told all kinds of things—none of which were right. I was made to feel like I was a hypochondriac, looking for sympathy or just plain crazy. Now I know what I have. I know the medications that will work (at least most of the time) and which ones won’t. I know what things to avoid to prevent an attack. Yes, there are still times when nothing works but it sure beats the times when I HAD nothing.
2. There is on-line, reliable information. When RLS started running my life, there was no computer access for the average person. If I had a question or needed information, I had to rely on my doctor-and we all know how helpful that was. Now, within seconds I can look up practically anything I need to. The problem is to make sure it is reliable information and the solution is to know your sources.
3. There are medications and treatments available to me. They may not always work and some don’t work at all but I do have options. Supplementing my calcium (which was my early doctor’s only suggestion) did not work, since that wasn’t the problem in the first place. And while we wait anxiously and impatiently for new medications, at least now there is research being done on RLS. We wish it would go faster but just a few short years ago, there was next to no interest in research or in us as patients.
4. I am not alone. This is the biggest blessing of them all. There were so many nights of walking the floor, feeling like I was the only person awake in the world. And why was I awake? No one could tell me. Now, I am in contact daily with people who understand exactly what I am going through. I have a network of people I can call on for support or just to listen to me vent. I have friends from around the world who care about me. I have some who have become heart-family. We are connected. Through exchanging bits and pieces at meetings or on the discussion board, we became friends and now we are family.

I am blessed. So are you. A new friend on the RLS Facebook site recently suggested that we keep a list. “Think of something good about the day and write it down. Keep writing down the good things and keep the list where you can see it. Read it as often as you can and every time you do, be thankful for these things. Keep your mind on what is good.” Thanks, Penny. Another blessing to be counted!

Merry Christmas, Happy Holidays or Have a Great Day. To each his blessed own.

Moon and Stars,
Kathy

RLS Research

The Restless Legs Syndrome Foundation is a non-profit organization providing the latest information about RLS. The goals of the Foundation are to increase awareness, improve treatments, and through research, find a cure for RLS, a condition which severely affects the lives of millions of individuals.

Many understand that the above goals are the cornerstone of the RLS Foundation. Many and more have benefited from what has been achieved so far. There is increased awareness, even if it isn't always positive. The FDA has now approved three medications for RLS/WED that weren't there just a few years ago. Research is ongoing for better and more medications. Even better, research is happening that might someday lead to a cure.

Facebook has been full of posts lately that have been negative about current research that links RLS/WED to high blood pressure. "We already knew that." "It was wasted money." "Why didn't they research something more important?" Good comments and valid questions. Who knows what the reasoning was behind granting the funds for the research? I've seen many cases of research money spent that seemed to be redundant or just plain silly. Maybe there was more to this than we understand. Maybe not.

Such is not the case for the RLS/WED Foundation. Since 1997 and the inception of the grant program, the RLS Foundation has honored promising scientists whose work addresses the goals of the Foundation. The RLS Foundation encourages grant applications for basic and clinical research studies of restless legs syndrome (RLS). Basic science leading to a better understanding of RLS, innovative approaches, interdisciplinary studies, and support of promising postdoctoral candidates is given funding priority. Since 1997, the RLS Foundation has funded 38 research grants for a total of $1.4 million.

These grants have been for research in the areas of genetics, iron regulation, neurophysiology (the nervous system), epidemiology (a branch of medical science that deals with the incidence, distribution, and control of disease in a population), and dopamine.

The Foundation can and does choose which research grants sound the most promising. Since RLS research money is very limited, these are all small grants used to stimulate interest and provide data for larger grants at either the National Institute of Health or the Canada Institute of Health Research. So far, these grant recipients have published 23 papers and three book chapters with an additional six manuscripts and two book chapters in process.

Unless you are an extremely rich philanthropist, most of us cannot fund research. However, your donation of any amount to the RLS/WED Foundation can be earmarked by you to go only to research. So if you are unhappy about what you read online, make a donation to the Foundation. Every dollar spent on research brings us that much closer to a cure.

What Will You Be For Halloween?

October. Fall. Colored leaves falling to the ground. Pumpkins, cider, harvest moon, hay rides...it all adds up to my favorite time of year. I love the cool days and cooler nights. I love to snuggle under blankets at night; I love to sleep and sleep and sleep. Wait a minute; something in this just is not tracking. (Fall, leaves, pumpkins, snuggle, sleep...) That's it! Sleep! I never get enough sleep!

Despite the lack of sleep, I do love this time of year. There's just a different feeling in the air that doesn't come from cooler weather or falling leaves. For me, it all stems from my childhood. When I was growing up, October was full of excitement all month long. Halloween costumes were in the making--no purchased masks for us! We drew pictures of costumes, begged and borrowed clothes, raided Mom's makeup bag and Dad's shoe closet. At various times I was a princess, a bum, a ghost and a fairy. The Halloween costume that stands out in my mind the most though was Blackbeard, the Pirate.

Dad shredded the bottoms of a pair of my jeans (much to my Mom's dismay!) and made me a really cool pirate sword out of cardboard and aluminum foil. I had an eye patch and a bandana around my head but the best part was the black makeup Dad used to make it look like I had a beard. Which was also the part that made it all so memorable. It didn't wash off. I don't know what he used but I went around for days with blonde pigtails and a five o'clock shadow.

This isn't my normal blog about RLS; I just wasn't in the mood. Halloween is almost here and hopefully you can feel the same shivering excitement in the world around you as I do. Life is too short to let RLS control everything, all the time. Have fun! Since we're up most of the night anyway, go trick-or-treating! Tomorrow we may be sleep-walking zombies but if we are, let's just it make part of our Halloween costume.

Moon and Stars,
Kathy

But What About....?

I talk to a lot of people about RLS/WED; at support group meetings, discussion boards, blogs and just people I meet. It's amazing how much MIS-information there is out there about RLS/WED--as my friend says, "It fairly boggles the mind!" In any search for information, please make sure you have reputable sources.

But lots of "information" I hear is centered around the Foundation itself or the Board of Directors. Someone once told me that they would not donate to the Foundation because of all the millions of dollars we accept from pharamceutical companies. If that's whats holding you back then read this; many years ago the decision was made not to accept money from these companies, for very good reasons. That holds true today. The only money accepted from pharma companies are an occasional grant for hosting patient meetings.

So here's your chance. Ask those questions and I will answer them the to the best of my ability. Have a comment about how something is done? Let me know. Have constructive suggestions on what needs to be done? Send them on. We're all in this together, even when it feels like you are the only person in the world with RLS/WED. So start thinking: But what about...?

Moon and Stars
Kathy

Tell Me About It

September is RLS Awareness month. September 23 is National RLS Awareness Day. Many of us who suffer with this terrible disorder will be holding special support group meetings, contacting the mayor to inact RLS Awareness Day, sending letters to the editor of the local newspaper or putting information out wherever possible. So who is? What are you doing to promote Awareness Week/Day? Tell me about it.

There are people out there who work tirelessly as support group leaders; not an easy job! Some people watch the internet and respond quickly and loudly to negative or misleading information. Many support each other on facebook or the RLS Discussion board. Some people are very generous with donations and some send what they can. What do you do in the fight against RLS? Tell me about it.

Many people are barely hanging on and getting through the day (and night) takes everything they have. Some people volunteer for clinical trials that just might help find new medications or get us closer to a cure. As sufferers, we come from all spectrums and walks of life. How do you get along? Tell me about it.

There are also many people who suffer with RLS who do nothing. The people I am talking about could do something but choose not to. They are often quick to complain about the lack of medications, qualified doctors, not enough research, education, support...but do nothing to help these come about. I could be wrong. If I am, tell me about it.

RLS Awareness month comes every year. Every year is another opportunity to bring awareness to people who suffer but maybe don't know what they suffer with. It brings an opportunity to help educate and support all of us; sufferers, doctors, family and friends, the media and the world. So why do we wait for someone else to do something? Who is ultimately responsible for our well-being? There are people out there who truly cannot do anything but hang on. I do what I can in this fight not only for me and my family but for them. If this blog made you uncomfortable, then look again at your situation and see what you can do to help. If you have comments about what I wrote, tell me about it.

**The statements and opinions here are solely my own and I take full responsibilty for them**

Moon and Stars
Kathy