Restless Legs Syndrome Foundation Blog

• All patient respondents identified themselves as having been diagnosed with RLS/WED, either by a physician or through self-diagnosis, with the majority reporting diagnosis between 30-70 years of age (84%).
• Almost one-third (35%) were diagnosed by a primary care physician, while another 39% were diagnosed by a neurologist and/or sleep specialist. 
• Eighty-three percent (83%) started taking medication between the ages of 30 and 70, despite the fact that almost half (45%) began experiencing symptoms before age 30. 
• Ninety-five percent (95%) of patients indicated they have taken prescription medication for their RLS/WED; of these patients, 97% were currently on prescription medication.
• 73% of patients report experiencing their RLS/WED symptoms on a daily basis.
• Sixty-one percent (61%) of patients report that their symptoms typically start in the afternoon or evening; however, 20% also report that the time that their symptoms start varies from day to day. 
• In addition to prescription treatments, patients also reported taking iron supplements (43%), natural remedies (25%) and over-the-counter sleep aids (21%).

• Only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s).
• About one-third (31%) of patients have switched medications three or more times since diagnosis.
• Almost one-quarter (23%) of patients have tried five or more medications to treat their symptoms.
• Patients reported lack of nighttime symptom control (46%), symptoms reappearing or getting worse after several months or years using a medication (33%), lack of daytime symptom control (24%) and experiencing unwanted side effects (23%) as the most common reasons for changing medication in the past.
• Ninety-three percent (93%) of patients “agreed” that they wished more effective medications were available to treat RLS/WED.
• Half (50%) report that they have been suffering with RLS/WED for a long time and nothing seems to work/adequately control their symptoms.

• More than two-thirds (68%) of patients reported that they have experienced the side effect of augmentation (defined as a worsening of RLS/WED symptoms that occur after starting a prescription medication to treat RLS/WED. Particularly, symptoms may occur earlier in the day, spread to body parts other than the legs, be more intense, and/or begin after a shorter period of rest of inactivity than before treatment).
• Sixty percent (60%) reported the side effect of augmentation to their physician, leading roughly one-third (32%) of patients to discontinue treatment and start a new medication while another 16% report that the dose or frequency of their medication was increased.
• A little less than one quarter (22%) of patients have experienced withdrawal symptoms while discontinuing treatment.

• Sixty-eight percent (68%) of patients “strongly agree” that there needs to be greater physician knowledge and understanding of RLS/WED.
• Forty-two percent (42%) “agree” that their health care provider does not understand their disease.
• About three-quarters (76%) “agree” that their doctor has prescribed the medication that is right for them.

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.

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