I have had RLS for about 25 years and essentially diagnosed myself, as my doctors at a major teaching hospital in the United States had never heard of it. Thank goodness, they were willing to learn, and based on what information we could find, I tried iron supplements and various other medications for a number of years, then the generic for Requip (ropinerol) for about 10 years. Fortunately, I never developed augmentation, but eventually the ropinerol was not effective. About the time my doctor switched me to the generic for Mirapex (pramipexole), I found the RLS Foundation on the internet. The foundation is a wonderful source of information and support, and I recently joined its Board of Directors, thanks to the sponsorship of a college classmate who is a long-time member of the organization. I am looking forward to working toward the three main goals of the RLS Foundation, especially the goal of raising awareness of this surprisingly common and often devastating disease.
So grateful to Restless Legs Syndrome Foundation. I've had RLS since 1995 and really appreciate all the support and research they've done since 1992. Happy 25 Year Anniversary!
The ED is so amazing and knowledgeable. The entire staff is helpful and on the ball! It has been a pleasure working with all of them.!!
Incredibly responsive staff! Answered questions, provided contacts with knowledgeable physician nearby, and supplied clear printed materials. Grateful for support group,thewebinars, and the newslette.
This is a terrible disease; the Foundation is a great ally.
I've had restless leg for years. It started to get worse when I was pregnant with my 3rd child. Surprise, surprise I was anemic. I have been trying to get my ferritin up every since, 15 years now. I also have inflammatory arthritis which also adds to my anemia of chronic disease. Strike two! RLS foundation gave me some suggestions on how to take iron so it will absorb better. Also, advise on antihistamines, which can make RLS worse. They were very quick to answer my questions. Thankful for RLS and all their work.
My name is Judy Lyons and I live in Lubec, Maine. I found RLS Foundation Inc. one night when I could not lie down and try to sleep because of this god awful disease. I think I may have even had RLS when I was a kid, but did not know it. I have been treated for RLS for at least 10 years. The biggest problem I have is living in a rural area too far away to find a good RLS doctor. The first medication I was put on was Requip. At first this helped a lot, although it made me nauseous every night I took it. Then my RLS kept getting worse and worse and starting earlier in the day. Most days I was in agony trying to set at my desk to do my job (Receptionist at the local Medical Center). Then I was searching the internet about RLS, trying desperately to find some help and I discovered AUGMENTATION. So I knew I had to get myself of Requip. I did not know I should wean off the dose I was on so I just stopped taking it. Sure wish I knew about RLS Foundation at that time! Needless to say I went through living hell getting off the Requip. I lasted almost 3 months, with only bits and pieces of sleep, most nights was just up walking the floor and rubbing my legs all night. Then I would have to go work all day. It was an experience I never want to repeat. Finally I could stand it no more, so I went to the doctor who I was seeing at the time (they changed frequently at the Medical Center for a few years) and she thought the answer was a sleeping pill. Well I really didn't think that would help, but I tried it. That of course made RLS worse. So then tried a different medication (don't remember what now) and that did not help either. Then Klonipen, the short time I took this it did help. But then I found out with this medication I would have to do urine checks and pill counts every month and my insurance did not pay for that, so I go off that medication. ( I would like to remind you that I work with these doctors every day, not like they only see me once in a blue moon). The I tried Horizant when that came out, could not take that, made me feel really funny. So the next medication was Lyrica, and I must say that worked like a dream, although had to keep upping the dose. Then in 2014 I had a hysterectomy and was on pain medication for a couple of weeks, no RLS!!! When I stopped the pain med, the Lyrica also stopped working, I was on 450Mg a night by then. My doctor did not want to up the dosage any more. So she prescribed Mirapex. Told her I did not want to take another dopamine drug (had learned all about it by then). She said the only she could give me, and unless I tried it no pain specialist would prescribe anything different (had to rule it out) So I started the Mirapex at .25mg, then went to .5 mg, now at .75 mg. I reluctantly went to the .75 but could not take the RLS anymore. I find the .75mg works a little better than the .5, but it does not give me relief every night. I am so tired of being treated like a guinea pig by the local doctors who do not know much about RLS. I shared a copy of Night Walkers with her a few weeks ago, hoping she would learn something. But would not really matter if she did, since she is leaving in 3 weeks anyway. So now I will have to go to yet another doctor, just praying for one that knows something about RLS, or at least believes what you tell them you are going through. - I have learned so much about this disease from the RLS Foundation site and facebook page, and I am so thankful for all the research you are doing, Hoping against hope someday there will be help for people like me. It is so nice to have people know how you feel and not laugh at you. So from the bottom of my heart I thank the RLS Foundation for all that you do.
As an academic Neurologist and Sleep Specialist at Vanderbilt University Medical Center, Nashville, Tennessee, I have found the RLS Foundation to be an invaluable resource and aid for my patients suffering from Restless Legs Syndrome. In addition to helping individuals who suffer from this condition with emotional and informational support, they have helped us carry out our local Nashville support group meetings for RLS patients and their families. The RLS Foundation newsletter is an important source of information for patients and physicians with its emphasis on proper diagnosis and treatment and the latest research on RLS and its allied condition, Periodic Limb Movements in Sleep (PLMS). The Foundation also is responsible for getting well placed articles on RLS into the broader media, further educating the public about this oftentimes serious condition which through insomnia can impair the quality of life. A small research grants program funded by the Foundation stimulates investigation into new possible causes and treatments. Art Walters, M.D. Professor of Neurology, Sleep Division, Vanderbilt University Medical Center, Nashville, TN.
The RLS Foundation in the last few years under the new leadership of Foundation board chair (Phelps) and Foundation director (Dzienkowski) has pulled the Foundation out of a major nose dive. It has work very hard to prove itself worthy of the patients, which it purports to serve by focusing on advancing awareness of disease, by educational efforts both in the clinical and scientific community, and by supporting research for new treatment options.
The Restless Legs Syndrome Foundation is THE reliable source of information about this horrible disease - and much more. In the past year, the RLS Foundation has tripled its commitment to funding research that will help to improve treatments and find a cure. It is advocating to protect patients' right to obtain medications that are known to be helpful in the treatment of RLS, but are threatened with unnecessary restrictions. RLS researchers who participate on a volunteer basis on the organization's Science and Medical Advisory Board were in the forefront in identifying the serious problem of augmentation of symptoms from a class of drugs that has been widely used to treat RLS (dopamine).
I and my fellow Board members at the RLS Foundation are committed to the organization's main goals - improve treatment, find a cure, and increase the knowledge of RLS among patients, their families, and medical service providers. I donate many hours each week to the work of the Foundation because I know it is the best resource of accurate information about RLS and the only philanthropic organization that funds RLS research.
As the beneficiary of consistent support from RLS Foundation over many years, I have learned how to advocate for my own needs, have been able to bring research and reliable information to my healthcare providers as well as other sufferers in my family and community, and have observed the Foundation faithfully adhere to the mission it embraces. As a board member it is a privilege to join like-minded volunteers this stewardship.
Awake and walking the floor one midnight sometime in the 80's, I turned to my new go-to resource - the internet -- and started punching in what I was experiencing: "jumpy legs" (my grandmother's phrase), wiggly legs, legs can't sleep... This inexpert search led me, even in those days of complicated algorithms, to the Restless Legs Syndrome Foundation. That was a watershed moment.
I've been a member ever since. The foundation has always been at the cutting edge of research into what we now know as Willis-Ekbom Disease (WED). More immediately, the Foundation-sponsored programs - Support Groups, Online Sharing Community, eagerly awaited monthly newsletter "Nightwalker" -- have been important means to a life-well-lived.
Key phrases of the Foundation -- "You are not alone" and "In search of a good night's sleep" and "Until there is a cure" are description, uplifting, hopeful. One cannot find anywhere another organization uniquely devoted to this disease. I support it with all my heart.
I am impressed by the involvement of the RLS Foundation in the science of the cause and the clinical study of the treatment and eventual cure of this debilitating syndrome. The quality of the science funded by the Foundation is top-notch thanks to the thorough and tough reviews by the Board members. It is an honor to serve as Board member for this Foundation.
In the early 1990s I was going nuts with a bad case of restless legs and a prescription of sinemet that seemed to be making it worse. And I couldn't get off of it. Through a friend and the web, I found a then-small group calling themselves the Restless Leg Syndrome Foundation. They steered me to the right doctors who got me off the harmful drugs and on to the right medications and treatments. I learned that they stood for "universal awareness" of this common but not understood disease. They stand for finding better treatments and they stand for research that could lead to a cure for this awful malady that plagued my mother and that drives my sister and me wild.
The RLS foundation aims to help those with syndrome, they are highly supportive of meritorious and timely research, and as such they advance our knowledge on the etiology of the syndrome as well as potential treatments.
The RLS Foundation advocates for those that suffer from restless legs syndrome, aids to help connect persons with RLS with medical experts that know how to treat RLS, and funds cutting edge research aimed at understanding this neurologic disease.
A foundation created by the patients for the patients.
RLSF is a solid, trusted source of information on this debilitating condition for members of my family. The research that RLSF funds offers help directly to them and to their physicians to improve their daily lives.
I found the rls.org site several years ago. It was the most wonderful thing that I could have done. I was at my breaking point. I couldn't ride in a car for more than 30 minutes or so without getting out and walking for several minutes. I was not sleeping more than a few hours a week. I was miserable. I found the site and all the information that they have. This lead me to finding a doctor and medication that have helped me to live a normal life. I have since become a support group leader and I love sharing my stories and hearing all of their stories.
I found my wonderful doctor on the restless legs website. I wasn't sleeping but an hour or two a night for years. He adjusted my meds and I have been sleeping great for the last five years now. It is such a relief to sleep like a normal person does.
The Restless Legs Syndrome Support group in Skagit Valley, Washington has been helping people struggling with this disease since 2002. They meet three times per month, providing education, information and support for victims and their families. I am a member of the steering committee, which plans, presents and evaluates the program. We also provide year-round telephone support offered by the 5 committee members. We advertise our meetings by email to interested parties and newspapers.
Shortly after I retired, I started having problems sleeping. The doctor that I consulted was of no help. After suffering for several years, I was finally diagnosed with RLS by a different doctor. Unfortunately, this doctor provided me with virtually no information about the disease. All of this is common for patients with RLS. While trying to educate myself, I came across the RLS Foundation. Not only did I find the information that my doctor did not provide, but I also learned about the research that is being done, the various treatments available and the fact that I was not alone with the experiences that I was having. My treatment went well for about two years, but then the medications stopped working. My doctors were of little help, but through the information that I had gained from the Foundation, I knew that I was augmenting on the drugs that were provided. This allowed me to find a new doctor who not only knew how to treat my augmentation, but who was not intimidated by the knowledge about treatments for RLS that I had gained through the Foundation. I am now almost symptom free for the first time in almost 8 years and am able to get a normal night's sleep. None of this would be possible if not for the information provided to both patients and doctors by the RLS Foundation. This is a relatively new disease that many doctors did not learn about in med school, so getting proper care from doctors can be a challenge. But progress is being made. Research being funded by the Foundation is finding more about the causes of the disease and awareness within the medical community seems to be increasing not only from the publications generated by this research but also from Foundation participating in relevant medical conferences. Without their efforts, thousands will continue to suffer due to the ignorance of doctors of even the existence of this relatively common disease.
I am very thankful for all of the great work these people do. They give us Hope for this very ugly disease we suffer from. They have so many contacts in the research field along with the TOP RLS doctors in the USA.