Restless Legs Syndrome Foundation Blog

Donna's Story

I've suffered from WED/RLS my entire life - since I was a child.

I was always being told to sit still, which of course I couldn't do. I'm 63 years old now, but when I was about 50 I finally couldn't take it anymore and my general practitioner referred me to a neurologist for treatment.

I was going for several days without sleep. My condition was affecting my job performance and home life. The neurologist started me on Requip and almost immediately I was getting 7-8 hours of restful sleep a night for the first time in as long as I could remember. However with increased dosages the Requip, the medication soon started losing its ability to relieve my symptoms. My doctor soon switched to Mixapex. I started with low doses, then progressed to Mixapex ER 1.5.

I was still experiencing what I refer to as breakthroughs (sleep) during the night so we added another .5 to 1.0 mg at night. This helped most nights, but I soon could not find any relief during, and right after a full moon. I also find that drastic changes in atmospheric pressure changes impact my WED/RLS. I’ve tracked/documented these symptoms. In some cases, I’ve gone up to 5 days without any sleep.

I should also mention that my maternal aunt and paternal grandmother suffered from WED/RLS as well. This condition causes depression, sleep deprivation, confusion, and all around irritability. I should also mention that twice during major surgery and recovery I have woke up while under anesthesia due to the WED/RLS severity.

I hope that this will assist you in your research.

The picture above shows the Alberta Treasury Branch's (ATB) presentation of the donation to the Canadian RLS Foundation. Left to right is Sharon Will, manager of the agency in our small Village, Michelle Payne, our son Trevor, myself Donna Payne and my husband Matt. In front are Trevor and Michelle's children, Marin and Riley.

The bank manager Sharon chose RLS Foundation as the charity of choice because she had attended our fund raising Garden Parties and realized the need to support WED/RLS was crucial. The ATB was celebrating their 75th anniversary and had allowed each of their branches, province wide, to choose a charity that they would be given $500.00 to donate to on their behalf. My heartfelt thanks goes out to Sharon and ATB.

I was so grateful that not only had the Garden Parties had raised funds for WED/RLS, but they have created awareness in our community. This awareness inspired Sharon Will to recognize the need to support the RLS Foundation's efforts to create awareness, find a cure and improve treatments.

Because we live in a small community our son, Trevor, is well known. Trevor's severe case of this debilitating disease has enabled us to plea with the women attending our Garden Parties to be generous in their support and indeed they have been.

In conclusion, I would like to encourage the WED/RLS community to do what they can to raise funds. I found my Garden Parties to be fun and inspiring. It's a great way to be involved in your community and raise awareness of WED/RLS. I hope to host another Garden Party fundraiser this summer.

Sincerely,
Donna Payne

Growing Pains

Last Tuesday, October 1st I had surgery on my left foot. I was given a mild sedative to make me sleepy and a local was used on the foot. After the surgery had begun the WED/RLS started and prevented the surgeon from proceeding until he could quiet the leg. After the procedure was complete and I went home, the WED/RLS came back and I was instructed to keep my leg elevated and an ice pack on my foot. That was impossible even after I took a pain pill to help quiet the leg. I was miserable all afternoon. This situation has happened twice before.  First when I was having a cataract done and second when I was admitted to the emergency room of a hospital for food poisoning picked up in a restaurant. In neither situation did they know how to handle the problem. On the third visit, we knew it was possible, but the problem after I came home in the afternoon was new and we just couldn’t turn off the WED/RLS.  I have told the doctors of the whole situation and I think we will be prepared if the situation ever arises again. The pain is finally gone from my foot – OH happy day.

• Recognition as leaders in the provision of comprehensive, high-quality care for WED/RLS on the Foundation’s website and other materials
• Recognition as a resource to primary care practices and regional support groups
• Annual WED Foundation-sponsored research meeting for WED/RLS Quality Care Centers (begins 2014)
• Opportunities to participate in care quality projects and apply for designated research funds  

The University of Texas Health Science Center at Houston (UTHealth)

Growing Pains

I was raised to regard family as truly important. When I was growing up we always spent Sunday at Grandma’s house visiting with aunts, uncles and assorted cousins. When someone asked how you were, they really wanted to know. I had horrible “growing pains” when I was little and I remember my Aunt Virginia massaging my legs with rubbing alcohol. I remember she kept it up for a long time and it did eventually help. This same aunt asked me last weekend if I was still having “trouble” with my legs. She knows there is a medical name for it but doesn’t remember what it is; she just knows I’ve had it for a long time.

Two of our daughters also had “growing pains” in their teens. The doctors went into a long explanation about bones outgrowing muscles and that they would soon go away. Somehow I didn’t link my daughters’ pains with the ones I had growing up. I was just learning about Willis-Ekbom disease, also known as restless legs syndrome or WED/RLS, and the connection between it and growing pains wasn’t apparent then. So they suffered and complained, just as I had. The pains did go away but just like with me, they were replaced with something worse.

I’ve only known that I have WED/RLS for the past 20 years or so. That seems like a long time but we all know that reliable information and medications that really work has NOT been available until fairly recently. I have tried many, many different medications (that did not work) and many more doctors (that also did not work). But I have suffered with this for most of my life. I also know now that my WED/RLS is hereditary. The day I realized that I was probably passing this on to my daughters was a truly horrible one. Not only is the disease horrible, but we are still having to deal with doctors who don’t care or who aren’t qualified to help, family and friends who don’t understand, and a lack of medications to choose from.

We have been blessed with three daughters who are strong, intelligent women. We have two beautiful grand-daughters with another due shortly. I am determined that although I may have passed this on to them, they will never suffer as I have. All the help I can give to the WED Foundation or to others by fundraising, sending donations, monitoring Facebook, being a support group leader, or just talking to others about it will also help my family. They may still suffer with the symptoms of WED/RLS but they will be educated about it and know what control they can have over it. They will have family that knows what they are going through and will stand by them with whatever help they can give. My aunt did that years ago when this didn’t even have a name that we knew of. All she knew was that she could help a little in stopping the pain. My goal is the same; I just have a little more at stake in it now.

Rochester, MN – October 1, 2013—The Willis-Ekbom Disease (WED) Foundation is pleased to announce the launch of a new program designed to improve diagnosis and treatment for individuals living with Willis-Ekbom disease, also known as restless legs syndrome (RLS). The Foundation is developing a network of WED-RLS Quality Care Centers (QCC) that has highly developed expertise in diagnosis and disease management over time. The University of Texas Health Science Center at Houston (UTHealth) has just been certified and joins the WED Foundation QCC network.

The program, under the direction of QCC Director Dr. William Ondo, will benefit patients and families through:

• Recognition of UTHealth as a specialty center in treating WED/RLS patients with a range of complexities and co morbidities;
• Availability of UTHealth QCC staff as information and referral resources for referring primary care providers
• Better understanding of the disease process and the patient’s role in care management through educational offerings, print materials, and connections with WED Foundation local support groups

Every day, the WED Foundation hears from WED/RLS patients who need help in finding a knowledgeable provider, better understanding of their disease, or finding new answers when their treatment loses effectiveness. “Nobody with WED/RLS should have a reduced quality of life,” says WED Foundation Executive Director Georgianna Bell. “This disease can be effectively managed over time, and we aim to work with clinicians to fulfill this expectation.”

To learn more about the WED/RLS Quality Care Center Program, please visit www.willis-ekbom.org.