Restless Legs Syndrome Foundation Inc

I suffered for 25 years with this wretched disease. When I discovered the RLS Foundation, my life changed. Not only am I suffering less, due to the great strides in medicine they have taken, I have a new family and support system. So many of us would feel helpless and desperate if it was not for this amazing foundation and all the people that contribute to it. Thank you for all you do and not giving up on us.

The RLS Foundation has worked wonders in two areas: getting WED/RLS noticed as a serious health condition by policy makers and healthcare providers, and supporting patients like me who had absolutely nowhere else to turn. Medical professionals are notoriously ignorant about the condition, and even do harm by prescribing medications that are now known to worsen the condition; but with materials from the Foundation I have been able to educate my own physicians, which has improved the quality and effectiveness of my care. Besides that kind of support, I have access to an online community of people from all over the world who share successes, solutions, and support. The Foundation also funds a considerable amount of research, which is helping to get other researchers interested in trying to figure out the mysteries of WED/RLS, all of which will hopefully lead to better treatments, and maybe even a cure. Fingers crossed.

This organization has been extremely helpful in providing me with valuable literature. I was able to get information for what drugs especially interact with RLS and provide this to my doctor. Also, a list of things to do before surgery when one has RLS. This helped my doctors accommodate the special needs I had during surgery. They publish people's suggestions in handling their RLS and I have found many of these helpful, too. The list they provide of RLS Specialty Clinics is invaluable to those just starting to treat their condition.

RLS is an invisible syndrome that most people don’t understand and don’t realize how horribly it can affect those who suffer from it. It’s hard to explain to other people why those with it can’t really live a normal life…waking up during the night to wander the house for hours trying to get rid of the symptoms, not being able to relax in front of the TV or sit on the couch in the evening reading a book. I watch tv using a stair stepper and read my book walking around the kitchen before going to bed. By raising awareness the RLS Foundation prompts researchers to try to find new medications that offer some relief. It also helps others understand what people are suffering from and that it’s not as trivial as the name of the syndrome makes it sound. It has also made the medical community more aware of how to treat the symptoms. Finally it allows via a forum those with RLS to communicate with each other to exchange tips and offer support.

I've had RLS since childhood, and didn't even have a name for it until I was in my forties. Then, for the next 20 years, none of my healthcare providers took it seriously. I received no treatment, or the wrong treatment. When I discovered the RLS Foundation, I finally had a source of real information about this condition. I attended their webinars and read every article they made available about research-based treatment options. I was then able to share credible data with my providers, who finally sat up and took notice. Now, at the age of 67, my symptoms are controlled with appropriate medication.

I recently found the RLS foundation. I was in the process of weaning from a dopamine drug and becoming very discouraged and overwhelmed thinking I would feel like this for the rest of my life. The information provided on the website helped me to navigate a very difficult time in my life. I went from hopeless to hopeful knowing that what I was experiencing was normal, explanations of what I would experience and that there was a light at the end of the tunnel. I also appreciate that the information is based on research. Top physicians from around the world provide research and guidance on how to live with this disorder.

The RLS Foundation is *the* pre-eminent organization providing essential, much-needed support and information to those who suffer from restless legs syndrome RLS), their loved ones, and their family members.
I have had RLS since 2006, and I was in the dark about it for many years (as was my doctor). When I came across the RLS Foundation, I finally learned what I have. I also learned about strategies and medications that really helped me deal with this terrible affliction, which had been robbing me of sleep for years. Now, with the help of knowledgeable doctors I learned about through the Foundation, my RLS symptoms are under good control, and I can finally sleep through the night without being jerked awake.
It's not an exaggeration to say that the RLS Foundation saved my health and my sanity. I owe them such a debt of gratitude, and have become a regular supporter.

If you suffer from RLS, this Foundation has the greatest collection of useful information to educate both yourself and your doctor.

The RLS Foundation has been a life-line for me as I live with the very misunderstood medical condition of RLS. They have amassed a wealth of resources available to members - it is like an oasis in a desert of ignorance! I found a Foundation certified medical center and my current MD through the Foundation after 10 years of being repeatedly misdiagnosed. I am grateful beyond words for all I have learned about my condition made possible by the RLS Foundation.

Unlike cancer, RLS is a low-profile disease. Without this organization it would be difficult to know much about the disease or keep up with advances in research about its causes and treatments. Very professional publications, very helpful.

It’s hard for non-sufferers of RLS to understand what a devastating ailment it can be. For many sufferers it’s even impossible to find a medical professional who can help. Sufferers are often seen as being hysterical (even by doctors!).
The Foundation is invaluable, providing knowledge and support directly to sufferers, drawing attention of the public to the disease, and funding research.

Without the RLS Foundation I don't know where I would be tofay.. I have become informed about the disease from this group and read all there updates as soon as possible,
this group is on the cutting edge of finding a cure for this nasty problem.

I have RLS, although not as bad as my mother. My grandmother also had it, as does my brother and some cousins. Mine is getting worse. Traveling is a challenge. RLS especially helped me to have less problems traveling which is a family activity. I have called the RLS Office a number of times. Each time the person who answered the phone was upbeat, efficient and helpful. By reading all that is sent out and listening to some of the webinars, I have been able to keep abreast with improvements in RLS treatment.

I am so grateful for all the information that is provided. It is a wonderful educational and supportive program.
It’s great to know you are not alone with your RLS and there is hope.

Imagine you are relaxing and all of a sudden you feel like you have to move your legs. The only thing that stops the leg movements is walking, tough to get a good night's rest. Your neurologist says he can take care of it and gives you medication. Unfortunately, things don't get better and are getting worse.
I went to the internet and started doing a search. I found a name, Restless Leg Syndrome and an organization that advocates for people that are affected by this problem. Watching videos, sending in questions and getting answers. They had information on how to treat my problem, I was able to search their website and found a doctor that could treat me. I found that my doctor had been treating my Restless Leg Syndrome wrong, I got a new lease on life which helped me not only medically but also mentally. My condition was so bad, there were times I thought I would want to end my life. RLS Foundation helped me gain my mental well being. Thanks to them

RLS Foundation provides up to date information on treatments and coping mechanisms. This Foundation is very supportive which is highly needed should you have restless legs. I have found them to be very comforting knowing I am not alone.

I have had RLS for sixty years, and until I discovered the Restless Legs Syndrome Foundation six years ago, I never had access to research information, support groups, doctors, and other people with RLS. The Foundation is funding significant medical research and doing a great job raising awareness about this commonplace but little-known condition. Donations are used wisely, and the Foundation has earned its Charity Navigator and GuideStar highest-level ratings. My life with RLS has improved tremendously since I first learned about the Restless Legs Syndrome Foundation.

RLS Foundation has provided me with very valuable information about this affliction.

The RLS Foundation plays a critical role in keeping our family (2 RLS suffers) informed and educated. There is much still to be learned and I’m grateful knowing there is an organization dedicated to keeping things moving forward.

I am a 66 year old woman, who has had restless legs for 20 years. It was ruining my life! I was prescribed ropinerole 5 years ago. I couldn't understand why my symptoms were getting worse. I joined the RLS.org, and educated myself, listening to the summits and portal presentations. I am now with a new neurologist, accepted as a patient at an RLS center where I am weaning off this dopamine, agonist. My life is already improved. I am grateful to the education I have received.

Communication and relevant research articles.

They provide much needed support to patients with RLS in too many ways to list here.

This is my only source to educate my doctor and make sure I am getting good care. I'd be lost without it!

Information through email and Nightwalkers publication has been clear, well-researched, and very helpful regarding strategies for dealing with RLS. I appreciate the Foundation's ongoing, science-based effort to provide more information and support for people with RLS and to advocate for more funding for research.

The amount of research and education this NP does is incredible. And the amount of information they offer to their members is beyond incredible. As a sufferer of RLS, I rely on the RLS Foundation for information, resources, and general guidance and they never fail to provide it. I am so thankful this foundation exists!

The wealth of information they put out to someone suffering with RLS has been of equal value as has the medical care I've received. I've been able to be very active in directing my own care by sharing information provided by the RLS Foundation with my medical team.

It is vital and important to have ready access to support and up to date treatment for RLS

Provide very helpful information for those suffering with RLS.

Provide scientific expertise to those suffering from this condition, make recommendations for handling day to day situations impacted by the condition, support research to find a cure.

RLS does a fantastic job in communicating new research, medical facilities, advocacy information, potential treatments/strategies and facilitating collaboration of sufferers for relief and support to cope.

The virtual support meetings that they host each week have been very helpful. I'm so grateful for all their work.

Excellent charity that brings attention to the RLS research, literature & treatments. Practical support for living with RLS! \u2764\uFE0F

An organization that helps 5 to 7% of the population with a serious condition little known to the general public and often times to the medical establishment. They take their education role very seriously. They provide support groups for patient suffering with RLS. The foundation funds and published research in a field little researched. They offer hope to sufferers. They stand alone in the field.

I needed advice about how to get information to bring to an upcoming medical appointment. This non profit gave me the paperwork I needed. RLS Foundation is where I go for all the latest info and research about RLS. They offer help to its members and non-members alike. They send a beautiful quarterly Newsletter to its members for its small $35 membership fee. I highly recommend RLS foundation to everyone.

I found a care center near me that was new. Since making an appt at UPMC I am doing much better with my RLS symptoms . I like the newsletter and the opportunity to to join webinars

Materials provided to members & provider's have been exceptional. Virtual zoom sessions introduce members to others also dealing with this disease.

They are so good about educating people about RLS and providing support to those of us who suffer from it.

As a patient with RLS, I have always valued the high-quality unbiased information foundation provides

RLS Foundation teaches and researches about RLS. If I have a question or concern they reach out to help me. They share their knowledge to make my life and that if others with RLS better. Wish they were around when my mother suffered so. RLS is doing a fantastic jobd

The RLS Foundation quarterly magazine is invaluable. I read it, highlight, save it and review it. The online seminars inform and educate about resources available to assist RLS sufferers about treatment options. A sufferer can research and compare treatment options, especially ones that didn't work and actually did more harm than good.

Since I found the foundation and meant doctor earley, my life has completely changed around for the positive. His research and help in easing my symptoms have greatly improved my quality of life! I'm very thankful for the RLS foundation!

Provides consistent, reliable information on RLS management and treatment and good forums for learning and sharing. Good source for finding the most knowledgeable healthcare providers. Influences policy to help improve access to life-changing treatments, including opioids.

I have been member for a very long time (before the move to TX) and I can say they have saved my life. When I was suffering and had nowhere to turn I found this ORG on google. I was able to get the information I needed to take to my Neurologist so he was open to help treat me correctly. I was even able to talk to my DR and enlist him into the quality care center program ( Dr. Machado from Yale). He has since moved on but I was able to work with a new Dr., Dr Koo also from Yale and I consider him the best in this area. Thanks for being there to help advocate for those suffering with RLS

The RLS Foundation provides education and information for people with RLS and for providers helping people with RLS. What this nonprofit provides is much needed and done well. There is a need for educated providers. I wish they were able to provide this information more completely than they currently do.

A wealth of information I was unable to find anywhere. Educated my MD

I had extremely severe Restless Legs, that two neurologists could not figure out how to treat. The Restless Legs organization gave then the help they needed to prescribe medicine that allows me to live a good life. I will be forever thankful to this wonderful, professional organization.

MY RLS STORY
Sister Phyllis Hunhoff, OSB
A Benedictine Religious of Sacred Heart Monastery in Yankton, SD
who recently celebrated 70 years of religious profession.
August, 2022

It was about four years ago that I awakened with RLS. After a fall (with unknown pneumonia) and four days in the hospital and a severe sciatica which needed a cortisone injection, my life changed with RLS. The early RLS medication regime was started. In two years, it became worse and augmentation had begun. It was probably about that time that I began my own research and found the RLS Foundation.

I have had the benefit of many of their publications. The Patient Symptom Diary gave me new insights into what was happening on a daily basis. I have spoken with many others with RLS through the Foundation Support Groups. I spent one entire Saturday listening to RLS physician specialists who have confirmed and highlighted important aspects about one’s daily life. I have looked forward to the newsletter, watching for what may be significant for my life. It was through another patient story that I learned of methadone, being used by a woman of advanced age, which is now a preferred medication. From taking it all at one time, I now space the same amount of medication over 5 hours (4pm – 7:30 pm and 9:30 pm). An article from the RLS Foundation inspired me to have a consultation with a hematologist. I have now had four iron infusions.

Many triggers have come to light which have brought new relief. For me, all foods with sugar and curry spices have been recognized. I now know that too much exercise increases my symptoms. However, walking is my companion during the night, anywhere from three to five times up, with varying lengths of time and distance to relieve the pain and jumping. Not only does the pain come to my legs but it also comes to my arms and hips. However, a therapist has designed a program for me based on a recommended regime from the RLS Foundation. As a Benedictine religious who is dedicated to the Liturgy of the Hours four times a day along with Holy Mass, I alternate walking and using an electric wheelchair through the long halls, to avoid too much exercise.

My monastic charges and pastimes, have been varied bringing the distractions necessary to give me some relief. During the two years of Covid, I became proficient in making Crepe Paper flowers. Today, I am into large difficult picture puzzles and just finished a three-dimensional puzzle of Big Ben.

The RLS Foundation Medical Alert card is in my purse and readily available at any change of medications. My doctors and nurses have been and will continue to be the recipients of this continuous new knowledge.

All of this has brought some relief and I am grateful that the RLS Foundation is continuing foreword for all of us.

RLS.org saved my life. This is a debilitating disease. It's hard to find a doctor who understands RLS and specifically how to use the meditations. The Foundation is our source for accurate information whether through educational webinars, publications, the discussion board, virtual support group meetings, or access to kind, knowledgeable staff. With a small staff and volunteers, they reach those of us suffering worldwide and support research into finding a cure. Thanks also for the top notch medical board who devote themselves to helping us.

The RLS Foundation:
-Funds grants for research in RLS, so that, one day, we who suffer from RLS will have to suffer no longer.
-Creates awareness, among the general population, of this often very debilitating syndrome.
- In a world where many people ( both lay people AND health care professionals) believe that RLS is "all in your head", the RLS Foundation educates the public on the VERY PHYSICALLY REAL nature of RLS.
-Provides sufferers of RLS with a forum for the exchange of ideas and the validation of feelings.

The service that the RLS Foundation provides are essential, and immeasurable in thier value and importance.

The RLS foundation has given me hope when I was feeling hopeless about my severe RLS. The information on their web site and the newsletter keep me up to date with the latest information. But flying from Hamilton, Canada to the symposium in California had the biggest impact. For there I met a doctor who understood my RLS unlike my doctor here. Within a month I was flying back to California to meet with Dr B. who helped get me past my augmentation and on the road to improvement of my RLS symptoms. I have and will continue to recommend the RLS foundation and their website to others who suffer from RLS.

The RLS Foundation is a great source of information, new developments in treatment, and provides comfort that you're not alone in this. The webinars, in particular, are very valuable in keeping me up to date on treatment changes I may want to explore with my physician. The RLS Foundation has greatly added to my sense of hope and optimism for better sleep in the future!

Without this organization, I would have never identified my disorder (RLS) many years ago. Through this organization, I have been able to find treatment and support that has literally been lifesaving to me. RLS can be so debilitating that it interferes with your ability to live a normal life, as sleep is elusive making it impossible to function during the day. This organization fights for the needs of RLS patients so they can get the treatment they need to survive this incurable disorder.

RLS is a puzzling disease with different symptoms and different treatments. There is no cure at this time. The RLS Foundation helps us sort through the data and tests and brings us experts to help us along as more information new studies.

The Restless Legs Foundation has been a godsend! I have suffered from RLS for 30 years and it wasn't until I discovered their website 3 years ago that I began to believe I could cope with it. At last, I was connected with a community of caring experts! The information provided by their website, publications and webinars is relevant, current, and patient-friendly. I shared an article from their NIghtwalkers publication with my doctor on the connection between low iron levels and RLS. My iron levels were checked and I'm now on oral iron supplements. Definitely a turning point for me!

The RLS foundation is the hope I have for research to someday find a cure for RLS. The past twenty plus years have been very frustrating in that I haven't had a good night's sleep during that time. Sleep is so important in staying healthy (at the age of 91) and it is so illusive. I sometimes wonder how many miles I have walked during the night trying to calm my RLS in order to get some sleep. I have tried several different medications which usually caused my head to be negatively affected the following morning. Carbidopa/levadopa has probably been the most help to me. The RLS Foundation has shown me that I am not alone and someone out there is working on the problem.

A great webinar. Would have liked more questions answered as Im sure there were many. Maybe that’s not possible.

The Restless Legs Foundation has been life changing for me. I have suffered with RLS for 30 years and not until I found the foundation did I find a group that understood the hell I went thru on a daily basis. I suffer from refractory RLS and not being able to sleep for days on end is miserable. My RLS symptoms mainly occurred between midnight and 5am and caused me to walk for hours on end. For the most part I suffered alone and in silence. The Foundation literature helped me understand the disease and how to best cope with the symptoms. The medical research I printed off and gave to my primary care physician to help treat me. When my symptoms became unmanageable I visited an RLS Quality Care Center and the attending RLS specialist listened and with me developed a management plan. He explained I was going thru augmentation and would need to change my prescriptions. This is the first time in 25+ years that a DR understood what I was living with and explained why the treatment plan I was on was not allowing me to sleep. Over the next month he helped me change my prescriptions and I slowly finally found sleep again. My symptoms did not vanish but were reduced significantly to the point where I could sleep. With my specialists help he changed my treatment plan several times to find the best one for me.

This was 6 years ago and since then the RLS Foundation has been instrumental in changing the way RLS is diagnosed and first treated. The foundation webinars on dedicated topics (augmentation, treatment with opiates, latest research, iron and RLS, etc) are very relevant and help us suffers maintain a better way of life. The Foundation holds weekly virtual support group meetings where suffers can log in and exchange ideas, tell their story and support each other. These group meetings have been very impactful to me. Listening and telling our stories with people that truly understand assures us we are not alone and we don't have to suffer in silence. In 2021 the Foundation posted and distributed an updated algorithm from the Mayo Clinic on the Management of Restless Legs. This medical literature will help so many suffers better understand the disease and best of all help educate the medical community on the latest treatment options. The foundation is doing so much to educate us suffers and the medical community on RLS. I owe the foundation so much.

Bill Wendt
Portland, OR

The RLSF provides a wealth of valuable information to those of us who suffer from RLS. It is an ongoing resource for me as I manage my condition. The leadership and staff of the foundation are very knowledgeable, dedicated and hard-working. About a year ago, I had the great honor to join the board of this organization and have become even more impressed with the work it does and the dedication it has to its mission.

Without the help of the RLS Foundation, I would have little to give -- to my family, to pursuits of work and leisure, to advocacy or altruism. Every day I am grateful for the support and reliable information I have found there.

Besides the knowledge that I am not a lone sufferer but can be in touch with many others through the Foundation's programs, I can be reassured knowing that the information provided is reliable and cutting edge, based on scientific evidence vetted by its impressive Scientific and Medical Advisory Board. The commitment of board members, the dedicated and knowledgeable Executive Director and staff, and the dedication of this entire team to offer help to all sufferers and fund research for better treatment and a cure make this a non-profit I'm proud to be part of.

I've just joined so I can help a family member, and I'm amazed by the trove of information, the people I've already managed to connect with, and the fantastic symposium they just held (10/17/20) that featured a panel of experts and was incredibly well managed. I run similar events and am very impressed.

This foundation has helped me to identify my condition, seek appropriate medical treatment adn to keep me educated about the medical complications of this disorder. This organization has a strong educational component for those afflicted. It also engages in important advocacy for the disorder and links patients with treatment providers with the appropriate expertise.

An incredible source of knowledge about a disease that is not appreciated or understood by almost all primary care doctors.

I am always surprised and impressed with the compassion and assistance I receive from all of the staff at the Foundation. They have provided so many with support and understanding - especially through the recent Virtual Support Group Meetings on Zoom. All of their educational webinars and materials help those who are suffering with RLS to understand the disease better and find better ways to manage their life with RLS.

This is an important charity that brings attention to the issue of restless legs syndrome. They have excellent programs/webinars and literature on the issue and are supporting important research on finding more treatments for this disease. It is a very well run charitable organization and I am proud to have been a contributor for many years.

RLS Foundation is a wonderful resource for people with Restless Leg Syndrome. Many publications are offered plus webinars that are exceptionally informative. Through the foundation, access is available for the best of care. They're support is phenomenal. I feel very fortunate to have the foundation and it's resources available. I live in a large city, but there are not a lot of highly experienced resources available.

I had not really known very much about Restless Legs Syndrome until I happened to talk with my cousin. He and other members of his family suffer from the disease. Listening to him talk about the sleepless nights, the associated pain and weariness, I began to wonder if anyone was doing anything about this "under the radar" disease. I found the Restless Legs Syndrome Foundation and began exploring the resources that they provide. Talking with members of the family, I came to appreciate how supportive -- life-changing, really -- the Foundation had been in their lives. The support groups, the scientifically-vetted materials, and the support of research have helped my relatives manage what otherwise would have been a devastating and joy-sucking condition.

I have worked at many non-profits as an employee and as a manager. I always look at the financial statements before I offer support to make sure that they are run prudently and devote the contributions they receive to solving the problems they talk about. I was surprised and pleased to see how lean an operating the Foundation runs. Gifts given to them really go to support the work they do and the research they encourage. So I am glad to be a supporter as a way of helping my cousin and his family live more pain-free lives.

RLS FOUNDATION IS A WONDERFUL LIFE ENHANCING RESOURCE FOR THOSE OF US WHO SUFFER FROM THIS DEBILITATING DISEASE.--TO DATE THERE IS NO CURE FOR RLS. ONE CAN ONLY MANAGE THE SYMPTOMS. THE RLS FOUNDATION PROVIDES A WEALTH OF INFORMATION ON HOW TO COPE & HOW TO IMPROVE OUR QUALITY OF LIFE. THE FOUNDATION IS A STRONG TIRELESS ADVOCATE WITH STATE AND FEDERAL LEGISLATURES, ON PROMOTING AN AWARENESS OF THIS DISEASE, IMPROVE TREATMENTS AND HOPEFULLY A FUTURE CURE. THE RLS FOUNDATIONS EXECUTIVE DIRECTOR AND HER PROFESSIONAL STAFF ARE INCREDIBLY RESPONSIVE TO THE INDIVIDUAL CONCERNS OF THE RLS PATIENT COMMUNITY

The RLS Foundation is the most reliable and authoritative source on Restless Legs Syndrome in the Northern Hemisphere. Thank you because all of us are in this together and we can count on this organization characterized by strong leadership, competent staff, and the dedicated and generous boards of volunteers: the Board of Directors and the Scientific and Medical Advisory Board. As a former board member , donor , group leader and contact for this group, I can strongly recommend you must learn more by searching www. rls.org. Why? I know because I have battled this disease for over 30 years and found this Foundation to be excellent in their information and determination to eradicate this disorder.
Régis Langelier, PhD ,
Licensed Psychologist , Maine

I have been both a volunteer for and general member of the RLS Foundation for many years. They continue to provide critical support for both myself and the rest of the RLS patients in the US and around the world. They information, research support and patient support that they provide is not available from any other organization.

I highly recommend this organization for anyone who is coping with RLS.

I have worked with the RLS Foundation since 2004 when I first received funding from the organization to support my pediatric RLS research. Since that time, I have found the RLSF to be an important resource for collaboration, development of new ideas and connecting with patients, clinicians and researchers alike. The RLSF is unique among patient advocacy organizations for its inclusive philosophy and for its dedication to diversity of thought in solving the RLS puzzle. Being a member of the multiple medical, research and industry organizations, I do not know of a more effective, efficient or authentic organization working on behalf of the wellbeing of people with any sleep disorder.

For years I ran in my sleep, ran holes in the sheets, hated going out in the evening and came to a place where I dreaded going to bed! I suffered alone for years, no one had answers until I discovered the RLS Foundation by accident. That accident has saved my sanity!. Through the RLS Foundation I have become more educated about RLS. The Foundation has an AMAZING amount of EXCELLENT material to help each of us. They have written material for those of us with RLS and our family members, they have very outstanding Webinars about different aspects of RLS.
If you suffer from RLS join us in our quest to find understanding and hopefully a cure for RLS.

The RLS Foundation provided our family with scientifically based information that we needed to help our child with RLS.
The staff is so knowledgeable, friendly and helpful. They sent me all the materials that I would need to share with our doctors.
I attended a Support Group in my area and it was so nice to connect with others and to learn from their experiences. Be sure to attend the free monthly webinars and join the discussion board.

The RLS.ORG website has so much information, their monthly webinars have been so helpful in understanding how to cope with this horrible disease. The NightWalkers magazine that they publish and mail quarterly is full of great information. I'm so grateful to have found this organization.

The Restless Legs Syndrome Foundation provides extremely helpful publications, webinars, and quality care centers for those in search of managing their RLS. With or without membership the RLS Foundations is always willing to help. Their incredible staff will answer your phone calls of emails if you have a questions in about 48 hours. The RLS Foundation provides a strong voice for all those suffering from RLS. Thank you for your wonderful work!

The RLS Foundation has been the greatest resource since finally being diagnosed with RLS in 2006. It is so refreshing to talk to people that actually know what I am going through. The RLS staff is very knowledgeable and friendly on the phone and always eager to help. Although I live far from the nearest support group, I have turned to the discussion board that acts as a virtual support group. Whenever I can't sleep, I know I can turn to my online discussion board at any time of the night. Thank you for all you do!

The Restless Legs Syndrome Foundation has the most up to date information on RLS. They helped me find a provider when I had no where else turn. Finally getting the appropriate treatment has improved my quality of life tremendously.

The RLS Foundation has been a God-sent organization helping me to learn about Restless Leg Syndrome (RLS) and to find informed doctors to help me manage the disorder. I attended their Conferences in 2008 and 2018 and have participated in many of their webinars. I read their newsletters from cover to cover. My RLS started in 2006 (at the age of 65) shortly after a severe attack of Shingles. For 12 years I suffered from nightly disrupted, insufficient sleep. In addition, I experienced jerking legs daily typical of RLS as well as shooting and grabbing pain in my feet and legs. I took the maximum dosage of Ropinirole and then Rotigotine daily. The fact that I got symptoms in mid-afternoon indicates that I had reached augmentation, and my neurologists confirmed that there were no alternative medications available except opioids. Through the RLS Foundation I found a neurologist who got me off the traditional RLS medications and started me on low-dose methadone treatment program. For the past eight months I have been 99% symptom-free and get 8-9 hours of solid sleep each night. The RLS is a low-budget, high-impact organization that plays an indispensable role. It coordinates research, outreach and helps to bring relief to thousands suffering from RLS and related sleep disorders.

RLS can be a very lonely nervous system disorder. Family, friends and even healthcare providers are not familiar with or knowledgeable about RLS. The RLS Foundation works very hard to increase awareness and publishes an exceptional newsletter as well as many other educational materials. The Foundation has not only provided me educational opportunities to learn about my RLS, but also facilitates networking within a growing community.
Two weeks ago, I attended the Foundations Patient Symposium. This was the absolute BEST conference I have ever attended over a 35 year nursing career. I feel so empowered and better equipped to deal with my RLS

I've had RLS for 40 yrs. Since finding and becoming a monthly supporter of the foundation I've been educated beyond my wildest expectations. I've suffered in silence for 30 yrs and for the past 10 yrs have had the relief I so coveted for years.......... because of the education and support of the RLS foundation. Cannot rank this foundation higher. It has 'saved the quality of my life'!

In the throes of the worst RLS I'd ever experienced and a doctor who was making it worse, I found the RLS Foundation's Discussion Board. The members told me of an educational event the Foundation was holding in California; I bought plane tickets, asked a friend in Long Beach if I could sleep on her couch, and off I went. All within one week - quite the leap of faith.

That event saved my sanity and likely my life. I found the information I needed as well as the support of some very special people.

I started to volunteer a year or so later and still do today. I cannot say enough about the staff; they keep telling me how much they appreciate me, when they truly are the ones that are exceptional. I also am fascinated by the people who frequent the Discussion Board; they are so generous and helpful with their support and information, it gives me faith in humanity on a daily basis.

The RLS Symposium was by far the most life changing event for me to date. I could never have the ability, time or money to put forth in order to obtain accesses to the medical professionals, education and information that they afforded me. I will do my best to help the RLS foundation continue their much needed and appreciated efforts to bring hope and healing for RLS patients around the country. A very heart felt THANK YOU to the RLS Foundation

The recent patient symposium was transformational. Yes great speakers and organization, but the sharing of information through the Whova app made everything better. We RLS’ers have felt alone for so long, it was wonderful to feel the camaraderie. As a former board member, it is so gratifying to see how the organization has matured.

The people leading this organization truly care about their members and the problems that they face. They recently carried out one of the best and most educational And helpful conferences that I’ve ever attended.The speakers were the experts in RLS from around the nation. The information that they shared literally changed the lives of the attendees. The money that they raise goes to research and advocacy for the needs of RLS Sufferers. Their communication with members is exemplary and continues throughout each year. They work tirelessly to raise awareness with doctors and politicians who make decisions about needed medications. This organization deserves 10 stars!

For many years I suffered every night with restless legs and the inability to get a full night's sleep. My primary care physician attempted to treat me and was successful for a few years. However, the longer I was on the prescribed drug the less effective it became and the worse my symptoms were. I did an internet search and found the RLS Foundation. It was a lifesaver! To see other's stories and the many ways that they attempted to alleviate their discomfort was helpful to know that I was not alone. In addition to sharing stories, the RLSF also maintains a list of qualified providers and certified treatment centers. I was fortunate to be in an area where one of the most prominent leaders in the field practiced and he has managed my RLS now for years. I was so impressed with the RLSF's commitment to research and easy access to staff to answer any questions or just to talk about my disease. Last year I was invited to be considered for a board of directors position and now am a board member. The level of commitment of all of the board members and staff is exceptional and we are all in search of finding the cause and a cure for RLS by funding research through the generous donations of our members.

I have been an RLS patient since childhood. Now in my late forties I have learned how to live with a quality of life I never knew was possible as compared with the decades I was suffering in ignorance. The foundation led me to knowledge, awareness and treatment for the condition. I tried many, many things to ease the discomfort in my legs with no success. It became a 2nd job, searching out ways to eliminate the discomfort. When I learned of the foundation I realized that I was not even close to alone. That this condition is much more common than I ever thought. Through my participation in the foundation I've met people who have lived my story, professionals that have helped me find the best solutions so I sleep with ease. This foundation is changing lives for the better, I am truly grateful to be a part.

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.
Lori

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.
Judy Lyons

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.

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.

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.

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.

Thanks!!!!

The RLS Foundation is a one stop shop for all information regarding RLS - background, medications, state-by-state Dr. list, expert presentations and more. They bring together RLS sufferers through social media and their support group network. It is great work to bring together people who understand what it is like to suffer with a disease that the general public has limited knowledge about. I trust that the Foundation is making strides to not only bring more awareness, but to find a cure.

If you suffer restless legs you think you are alone with no help and no one to understand what you are going through day after day night after night, that is until you find out that RLS is there and what a relief it is that someone is trying to bring a voice to all sufferers out there.

As a friend of a strong young lady living with this disease, I am thankful to know that the RLS Foundation is there to provide support and trustworthy information for individuals and their families/friends who are affected by this disease. A truly great organization.

RLS plagues many of the women in my family and I am grateful the Foundation provides support and guidance on treatment and coping mechanisms for those who suffer from RLS and medical professionals treating RLS.

The Restless Leg Syndrome Foundation provides much needed up-to-date information on this syndrome which is difficult to understand for many - even those in the health care profession. After nearly 10 years of trying to educate my mother's providers at her skilled nursing residence, the staff still don't seem to understand her symptoms or how to best treat her. I'm thankful for the on-going efforts of this valuable foundation!

Fantastic organization.Trusted source for pertinent and useful information and guidance. They provide support to patients and families through awareness and education. I love this organization

This Foundation and it's website have been a lifeline for people suffering from RLS. I actually first found it in the middle of the night when I was desparate for some help with my RLS. On the Discussion Board I found a medication to try which my doctor had not been aware of. I was able to sleep again...for awhile, anyway.

i felt I should delete my posting, being that it was way too extreme. I do not condone any drastic measures such as I had mentioned in my posting.
I think RLSF Inc is a wonderful organization, and hope to manage to logon to the site for emotional support.
Thanks, sk58@gm.com

Please, I have been a member for over 20 years. I need the information for surgery and hospitalization. I cannot access that information.

It was so comforting to find an organization that totally understand restless leg syndrome and the affect it can have on one's life. Sleep depreivation is serious. I've learned about side effects of medications used to treat the disease, that it is genetics, that there are things one can do from a nutritional and supplemental aspect to help. They have now established quality centers. The webinars are very educational. They've giving me hope. This is such a stupid and silly disease. People have a very difficult time understanding it if they have never been affected. This organization is awesome.

I have mobility issues, and if given the choice to be able to run and dance OR be rid of WED/RLS, it would be a hard choice. This wonderful foundation has done MAJOR things for the mere 7% of us who are misunderstood sleep & relaxation deprived victims. Without the foundation we would also lack knowledge & any relief. Few doctors are knowledgeable, we must self advocate. Now the foundation has several centers and I will be travelling to Baltimore soon to see Dr. Earley. The meds for this disease tend to augment or lose effectiveness, so treatment is ongoing. A big plus is that Dr. Earley will treat & prescribe online. I am hopeful for myself and my son who is 37 years old and already experiencing symptoms which deprive him of sleep.

I began experiencing WED/RLS at about age four. My father had the disease as an adult and both my children are now experiencing symptoms in their 20's. I am currently 59 years of age and would describe my symptoms as extremely severe. I use to be able to control symptoms with regular exercise.
As I aged and had three pregnancies my symptoms continued to worsen. During my middle thirties my symptoms increased causing severe sleep deprivation. I was married, raising children and working as a nurse. Despite exhaustion I did manage to function at a fairly high level. I had over the years sought lots of medical assistance from doctors whom would look at me like I was crazy when I would describe the symptoms. I literally could find no help. As my sleep deprivation worsened I became depressed and was treated with antidepressants which helped my mood and possibly improved my sleep a bit.

I believe in the late 1990's I saw a commercial for Mirapex which described my symptoms completely. I was so excited and made an appointment with a sleep specialist who did prescribe Mirapex for me. For about 2 years it was a miracle drug for me. I was getting major relief from my WED symptoms. However as time progressed I needed to continually increase the dose. I developed compulsive gambling which I had no idea was related to the Mirapex. I had never enjoyed gambling previously and was completely thrown by this compulsion. I attended Gamblers Anonymous, never carried cash, tried many things and was unable to control the gambling. My gambling was rightly fully so causing severe marital issues . It was on a commercial for Mirapex that we saw compulsive gambling as a possible side effect. We made an appointment with my sleep specialist, he stopped the Mirapex cold turkey and started me on a very low dose of Requip. The full onslaught of my WED symptoms returned. The Requip did not help and I was in severe pain and unable to sleep at all. Gabopentin was also of no help. Later I learned that this transition from Mirapex to Requip may have been easier if my physician had slowly reduced the Mirapex and started the Requip.

Im sought help from my Family Physician who referred me to a neurologist.
By that time my sleep deprivation was so severe that as I would pace the floors at night I would literally fall asleep standing and fall to the floor. Unfortunately the neurologist I saw was not well informed on R
WED, diagnosed me as in a manic phase of bi -polar with the WED symptoms a side effect of the mania. He prescribed Lamictal. As I understand there is a 1/ 100,000 chance of a serious reaction to Lamictal. Within 24 hours of beginning the medication I was having severe visual and as
auditory hallucinations, extreme physical agitation with continued severe WED symptom, and massively suicidal. With a bi-polar diagnosis, the neurologist and emergency room physicians did not believe that I was having this rare reaction to Lamictal. No one would listen. At one point another neurologist was called to the E.R., questioned why I was on the Lamictal and placed me on Sinemet.
I did experience some relief of symptoms with the Sinemet. A few days later when I called my neurologist for a refill of,the the Sinemet he angrily refused. At that point my husband said I needed to stop the Lamictal, basically stating ' you saw the neurologist initially as an exhausted woman and he has made you crazy. Stop the Lamictal'. I did as he suggested and so thing a few days my mind began to clear. I made an appointment with the neurologist I had seen in the Emergency Room. Due to my history of reactions to medications he was concerned about prescribing anything other then Sinemet, but at least I was getting some relief and was no longer feeling crazy.

I am now 6 years post Lamictal incidence. The Lamictal has caused my WED to worsen, have had definitely cognitive damage and am no longer able to work. Methadone is the only medication that now relieves the pain of WED, but unfortunately causes severe debilitating depression. Without the Methadone, the electric voltage type pain, need to be aggressively moving at all times 24 hours a day and the inability to sleep makes my life unlivable. The Methadone increases my depression to such a severe level that 50% of my days, all I want to do is die. I know it is the Methadone because when I stopped taking it and used Oxycodone my mood improved significantly. Unfortunately the dose I need to control the pain is higher then my neurologist is comfortable in prescribing. Therefore I had to return to the Methadone.

WED truly controls my entire life. I am no longer able to work at a job I truly loved, have lost friends because the depression can make it too difficult to socialize at a normal level, my husband and I can not do the things we hoped to do at this point in our lives, and everyday is a struggle for me.

The WED Foundation has truly been a life saver for me. The information, support from administration and the ability to read others stories has as I repeat a life saver. I so not say that lightly. It truly has stopped me from injuring myself and has at times given me reason to hope.

Thank you.

I am almost 75; my first extreme episode of RLS occured about 7 months into my first pregnancy, at the age of 22. Although my grandmother and my mother both had what they called "the heebie-jeebies", I did not associate my symptoms with them. Much like another reviewer mentioned, a small blip in Modern Maturity (AARP magazine) in the early '90's finally gave a name to what I had suffered continually with for over 30 years! By then, I had discovered by trial and error that limiting caffeine and sugar, and regular exercise helped the symptoms, but spent untold hours watching TV or reading on the floor because I could not sit. Traveling became miserable; my husband finally moved into the guest room because I kept him awake due to getting up several times a night to do leg exercises on the floor, or to take a hot bath.

After learning that my misery actually had a name, and getting my first computer, I found the RLS website, with its interactive forum. Shortly thereafter, I also found a neurologist at a nearby teaching hospital who was beginning to treat patients like me. Fortunately, I had learned that some pain meds greatly relieved the symptoms, and he was willing to prescribe low doses for my worst nights.
Then, along came all the research showing that Requip and other DAs were also effective for many RLSers.

For the last 10 years or so, I have been able to combine a low dose of ropinerole at night, with a low dose of different types of pain meds mid-afternoon (I alternate periodically to lessen the chance of addiction and rebound). Most nights, I sleep 7-8 hours, with only occasional break-throughs. I do often have early morning fatigue, which my doctor says is probably caused by the ropinerole, but a small price to pay for sleep! Of course, I still exercise, use very little sugar and caffeine (especially after noontime), and hot baths are my go-to if I forget to take my meds on time.

Thank you, WED Foundation, for keeping us up to date with helpful information, and most of all, for the continuing research. I have often remarked that everyone should have to spend one night with severe RLS, without medication.........then we wouldn't have to have so many conversations with others about what living with it is like!

I have been a volunteer with RLS/WED since 1994. Why did I start and why do I continue? It is because this condition can be extremely disruptive to one's life and can rob victims of years of joy. The pain, confusion, health risks, and depression are magnified by misunderstanding, confusion about diagnostics and treatment, and jokes based on ignorance.

Above all, those of us with RLS/WED need a reliable source of information, including an organization you can trust to debunk quackery. We are fortunate and I am grateful that we have such an organization in RLS/WED which continues to grow and evolve to serve our community better.

Consider joining, or using, or offering your story to help others, because it is a tough condition.

My experience with RLS/WED started with my mum more than 20 years ago. She had restless legs for a few years but seemed to manage it at first, but then 17 years ago she developed chronic renal failure and her symptoms got gradually worse. About 3 years into her renal illness her RLS got so bad that she started walking the floor nearly every night, but the doctors told her it was all in her head and there was nothing they could do for her.
Eventually at one point she was admitted to a psychiatric hospital because she couldn't bear it any longer, she had at this point went about a week without sleep. After being in the hospital she fell into a coma which she stayed in for 3 days. It was her body just collapsing with sheer exhaustion.
Us, her family didn't understand and believed the doctors that it was all in her head, so as a result didn't have the sympathy for her that we should have.
Sadly my mum passed away 14 years ago from her renal failure.
About a year after this I myself started having symptoms like my mum, I was devastated that every time I went to the doctor I was looked at like my mum was, like here we go again.
I was referred to a neurologist whom I was under for 10 years, and in this 10 years I had every test under the sun, ct scans, MRI scans, the lot. After the 10 years, by which time my symptoms had become so severe that I was the one walking the floor every night, and this is when I realised just how much torture my mum had been in.
My last appointment with that neurologist sighed and said nonchalantly "well we have came to the end of the road" I asked what she meant by this, and she said, we have tried every test I can think of and have found nothing wrong with you.
I was devistated and just broke down and said I couldn't suffer like this any longer and was contemplating suiside.
She panicked then and said the only thing she could do for me was to refer me to another neurologist, of course I jumped at the chance, but was told this could take some months, I didn't care I just needed to know what was wrong with me, as my symptoms were so severe that I couldn't sleep at night at all, and only slept when my body was just totally and utterly exhausted,
In the United Kingdom there is a rule that if you don't see a specialist within 9 months of a referral, by law you must then be referred to a private practice.
This happened to me, and when I finally got the appointment with a consultant I fully expected him to tell me what the previous neurologist told me.
You can imagine my astonishment when, within 5 minutes of describing my symptoms, he said "I know what's wrong with you" I was stunned, and scared when I asked him what it was. He said you have a thing called RLS, of course I had never heard of this, so he explained all the symptoms to me.
I was stunned as he was describing me to a T.
He said I was lucky as there was a RLS specialist in Scotland where I am and he referred me to him.
I came out the hospital that day with so many emotions, but the main one was relief, that finally it was confirmed there was something wrong with me. ( how sad is that) and second there was a doctor who could try and help me.
That was over 2 years ago now, and it has been explained that there is no cure, or even any way to test for it, and that different medication works for different patients, sadly because my symptoms are so severe it is difficult to get my medication right, but at least I have someone who knows that I have a real disease and totally understand what I am going through.
Hopefully he will get my medication right soon. I am due to start a new medication this week, so fingers crossed that this is the one.
I have learned 2 things from my experience
1. I had to educate my own GP on the subject who has since read up on it himself so hopefully he will recognise the symptoms for the next sufferer who goes to see him. And most importand of all, for him to educate the other doctors at the surgery, and maybe it will roll out to their doctor friends.
2. My biggest regret is that I never got to tell my mum that I understand what she went through and gave her the sympathy she so badly deserved. I wish I could just get a few minutes back with her to tell her this, I would do anything for that.
So the best I can do is spread the word to anyone who will listen. And I have managed to persuade someone from the USA who are having a support meeting with speakers who are experts in this field, and also fellow sufferers and they will have a Q & A session, they are going to film it and publish it on this website and hopefully if everything goes well on Sunday they will in the future have live feeds through social media etc.
This I hope can happen as it can help so many people, if it helps just one person or helps undiagnosed people to see it, then I will feel like I have done something very productive and will continue the fight for this disease to be recognised not only by sufferers but most importantly by medical profession to recognise symptoms way sooner than it took for me to get diagnosed

As a former member of the BOD at the Foundation for 6 years, it was gratifying to see how this organization works tirelessly to advocate for public awareness and individual support for those in extreme need.
I feel that educating the public and the medical community is something that the Foundation does very well. The new updated website allows individuals the opportunity to access current information regarding this disease. It is so important to support the Foundation so that the continued research will give hope to those who have not been helped by the current medications.
It was a very rewarding experience to be on the BOD, and I would highly recommend that you give of yourself to help those who are so desperate.

A lifetime of agony. Dr's visits at very young age. He's "just fidgety or hyperactive" were the comments. How else at such a young age of 8 yrs old do I explain this to anyone. Fatigued each and every day of my life from little sleep. Old enough to understand the effects of drug and alcohol; I seek to medicate myself with disastrous results.God, I plead, what is wrong with me?! THANK GOD FOR THIS ORGANIZATION! Someone knows and understands what was going on all along!

I can't help but wonder where I would be today had I not found the WED/RLS Foundation when I did. I was suffering from uncontrollable and severe leg 'symptoms' that were getting progressively worse and controlled only with strong narcotics. Where would that have led me ??? At that time, I didn't even have a name for what was happening to me nor could I find a doctor any wiser. And then I heard about THIS FOUNDATION !!! The Foundation was still pretty new at that time (1990's) and their information compared with today was pretty sketchy. However it was also evident t that I was not alone and others were not only volunteering their time to help search for answers but willing to share what they had learned. Importantly, I found some relief from this miserable condition.
I'm a strong believer in 'giving back' and I decided to try to help in any way I could so others would have an easier time.

As a result I sat on the Board for six years, have volunteered for our local Support Group and am on the Canadian WED/RLS board. I've specifically targeted the medical community and my particular interest is in our 'aging population' (since I am one!) and the multiple problems this disease can exacerbate.

Without the direction of the Foundation none of this would have been possible. I owe a great debt .
Much is left to be done. I hope others with this condition will help us continue to find answers. We can always use your help.

This small but mighty foundation works tirelessly to provide support & education, to further research for a cure and new treatments/medications for this horrid disease and most recently, to open a Center of Excellence dedicated to this disease. People who suffer can find support in others, assistance with information and referral, a valuable newsletter and so much more - but it cannot be done without donor support. The support of the WED/RLS community is vital to the organization so it can continue to provide all of these services. We must continue to move forward in the search for a cure and new treatments. The medical community is finding out more every day and we must support these efforts on behalf of all of those effected. Spread the word about the good work done by this foundation and donate anything you can - no donation is too small and the cause is so important!

I was on the Willis-Ekbom -Board of Directors for 7 years. During that time I think that the most valuable lessons that I learned are: The foundation serves as a beacon to let others know that they are not alone with this horrendous disease. There are those who believe that one should not use medication in treatment-----To those persons I would say you will not experience the same degree of relief. Each person with W-E will need to make educated guesses with his doctor regarding best treatment. We all need to continue helping fund the Foundation so it can continue to be a viable organization.
Gene Sivertson

The Willis-Ekbom Disease Foundation helps individuals with WED (also known as Restless Leg Syndrome). They offer expert advise, information and newsletters to help those who suffer from this disease.

I have had RLS all my life. As a child it was an irritation. As an adult it has deteriorated really significantly. It's pretty extreme now and without medication I would get no sleep at all. Not a wink! Without the information found on the RLS website, I don't think I would even have medicatin! The info has been invaluable to share with my doctor and the support from other members makes me feel like I am not alone. Thank you!

Restless leg has been a problem for many years. Some nights you can get to sleep with minimal problems. Then there are those nights where your legs bicycle all night. You are exhausted. People need to understand tha RLS is real. We have real issues.

I am trying to educate others but its hard..unless they have it they just don't understand!! I will keep
plugging along.

I have had RLS for over 10 years, and it has been getting worse. Having an organization that shares info and provides a forum for people helping people is invaluable to me. I have learned a lot and found some great ideas to try in an effort to control this ailment. Thanks to all!

I have had RLS(WED) for about 12 years now. It was a relief to find the Restless Legs Syndrome Foundation. I was able to learn that others were going through the same thing I was. I have also learned about different therapies being used to treat RLS.

I have had RLS since 8 years old. I am now 69. Throughout my life I would describe the symptoms to various Doctors, with no results. They typically would look at me suggesting maybe it was psychosomatic! It was painful, frustrating and hopeless!!!! When I was 50, I received my first issue of Modern Maturity, AARP's magazine and in it was an article about RLS and the RLS Foundation. OMG, I couldn't believe what I reading. I thought I died and went to heaven!!!!!!!!!!!!! I felt as though i had found an oasis in a very excruciating desert. I went to support groups in Manhattan and finally found a voice for my agony. It helped me find medication for some treatment,and relief, although the medication is far from perfect. We must NOT STOP supporting this outstanding organization. There is much more work to be done!!!! I Thank God every day that the RLS Foundation exists!!!!!!!!!!!!!!!

For many years I did not know what was wrong with me--why I had such strange feelings in my legs and couldn't sleep. When I finally found out it was Restless Legs Syndrome, I started researching it on the internet. (My doctor certainly knew little about it!) That's when I found the RLS Foundation. From that point, I started taking control of my disorder instead of it having control over me. I found good, reliable information that was up-to-date and it was FREE! I found others who suffered just like me on the discussion board and made some life-long friends. I found information to take to my doctors (yes, there were several) and that information was also free. I became a member and later a support group leader for the Foundation. I was helped every step of the way and continue to be able to ask for help with no strings attached. There are benefits in becoming a member but you aren't blocked out if you aren't.

For the past several years, we who suffer with RLS have had to endure ridicule from comedians and the media. We have been labled "disease mongerers", hypochondriacs, nuts, and fakers. Through it all, the Foundation has been a rock. They have sent out appeals for us to write rebuttals and have done so themselves. They hold themselves to the highest levels of responsibility and credibility. They continue to do their best to get quality information out to everyone. They have recently started a facebook page and continue to keep their website updated.

There is a lot of information out there about RLS; much is misinformation. So it is good that there is one place we can trust to keep us updated and informed as well as supported.