I love to see any new web sites with info on RLS and other sleep disorders. However, when I see these videos and stories written and done by doctors they do not ever seem to address the struggle that a lot of us have getting our symptoms under control. RLS can take over your life, and can ruin so many things.Let me start by telling you that I moderate 3 very busy online support groups for RLS and various sleep disorders. I have had RLS myself for close to 37 yrs, and have never been able to get it under control, and I have access to almost all information on the subject. I am a member of the RLS Foundation and have lots of communication with researchers and doctors there. I am on disability for chronic pain, chronic depression, and my various sleep disorders.
If you look at a list of the medications that can be used for RLS I and others have run the table and eventually get back to the question," what can we do now??"
I found out by accident that opioids are the only meds that will allow me to get even a couple hrs of sleep, or sit through a movie, play or concert. After I had an hysterctomy the pain meds kept my legs quiet 80 % of the time. And, they still do now. But, before my doctor and I decided that this was the way to go, I went through every med, including off label uses, for RLS. The Parkinson's meds gave me such bad side effects that I lost 37 lbs.! Now,I wanted to lose weight, but that was not the way to do it! My neuro of 15 yrs told me that it was Requip or nothing, so he is not my neuro any more. I cannot even explain to you how constantly sick I was when trying to "follow the rules". I was told that I was not working well with them. For ten years he gave me scripts for Klonopin and Tramadol, and I was pretty satisfied with those keeping the RLS to a point where I could lead a semi normal life. I was still working at the time. Then as soon as Requip was approved he said it was "Requip or nothing".What kind of way is that to treat a long time patient of his? I tried it for 4 months, and could not get out of bed except to crawl to the bathroom. I lost my business, my income, my house, and had to declare bankruptcy. This is the honest truth, and unfortunately I have heard this same story way too many times.
It is hard enough to have to explain why you are so exhausted to coworkers and friends. When you constantly have to explain yourself to your partner, boyfriend, husband they just do not get it. Sleep disorders can ruin your life if you are not proactive in your own health care.
I guess the point of this whole thing is that you have to take care of yourself, and do your own research to be an informed patient. So many doctors are just catching up to RLS information, and do not keep up with the latest studies, findings, etc, because they just do not have the time. They know what the drug reps tell them, and some do not go any further than that. It can be very frustrating for the doctors as well as the patients, to put it mildly.
Every day I get new members into my groups, and it is very apparent that self education is necessary.
Another thing that really burns me is how people react to the drug commercials, and say that RLS is a designer disease made up by the drug companies to sell drugs. This "designer" disease has been around in literature since the 1600's, and Dr. Ekbom came up with the name for it in the 40's! So, it is hardly anything new. When we try to explain how bad RLS can be, we get the eyeroll. Some days we can deal with it, and other days we can't. I think the prevalence of chronic depression is so high in the sleep disorder category, especially when you feel you have no control. There really need to be more studies of how badly RLS can be so overwhelming to the patient, both mentally and physically. I am rambling, but I hope I am making my point. :o) I have had about 5 hrs sleep in the last 3 days.
Anyway, I could ramble on some more, but I think I would be repeating myself. I just want to see more info out there besides "Take this pill, and all will be fine." Different meds work differently for different people, and to say that Mirapex or Requip is the fix for RLS is simply not true as far as I can see. After you take Mirapex for a while you start experiencing rebound symptoms, or augmentation. This is one reason why it is so hard to medicate a person with RLS. Eventually, almost all meds have to be interspersed with a "drug holiday". In my support groups there is a total of about 1600 members, mostly all with RLS, and a lot of them I have been communicating with for over a decade. Every day there is someone who feels suicidal and that they just cannot go on. There is one woman who i think really would kill herself if she did not have a 13 yr old daughter. It is so sad, and I struggle every day trying to keep the support going. I am glad I am on disability now, because I would not have time for my support groups otherwise, and right now by helping others, I am helping myself.
So, there is my story. Thanks for listening!
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