AANEM Foundation News Express

AANEM Foundation News Express

So Many Sunrises: Janet and Her Restless Legs Syndrome

9/16/2021
 
Janet Yaeger is a painter, decorator, and children’s book author who loves to travel and spend time with her husband of 45 years. Janet Yaeger, of Mt. Vernon, IL, also spent years thinking she was “losing her mind” due to the strange symptoms in her legs that kept her awake.

“I was I my mid-30s when I first noticed that I couldn’t sit still,” Janet recalls. “I was at my dentist’s office and I needed to sit still, but I had a continuous urge to move my legs.” Around that same time, Janet began spending night after night not being able to lie still enough to sleep. “The only thing that would help me was walking, which I did—sometimes to the point of exhaustion,” Janet explains. “I was a paralegal and administrative assistant of a law firm and not sleeping became a huge problem with my work.”

At one point, Janet attended a party that changed her perspective on her troublesome, nightly leg urges. “At a dinner party, I mentioned to the woman sitting next to me that I could tell her what was on TV in the middle of the night because I couldn’t ever sleep. The woman, who happened to be a nurse, asked me more about the symptoms keeping me awake. She was the first person to wonder if I had RLS.”

RLS, or restless legs syndrome, is a neurological disorder that causes an uncomfortable feeling in a person’s legs while they are sitting or lying down. Moving the legs or walking around often eases the symptoms while the movement occurs. Symptoms may not appear during the day if a person is active, but difficulty falling asleep and staying asleep at night often result as movement subsides. This leads to fatigue during the day. As many as 12 million people in the United States may be living with RLS. It affects men and women equally, and can begin at any age.

Janet states, “After talking with that nurse at the dinner party, I made an appointment with my primary care physician who, after asking me questions, referred me for an appointment with a neurologist at Barnes Hospital in St. Louis, MO.”

Upon explaining her regular symptoms to the neurologist, Janet received her official diagnoses of restless legs syndrome when she was in her mid-30s. “I was relieved to get a diagnosis,” Janet remembers. “I was beginning to think I was losing my mind.” Janet was prescribed Mirapex (pramipexole) and Klonopin (clonazepam). “I have been on both drugs since I was diagnosed. Both drugs help me. Unless there is a miracle, I will stay on my current medications.” While a cure for RLS has not yet been discovered, many treatments, coping strategies, and support resources are available to help those living with the disorder.

Eventually, Janet was seen by three neurologists. She continues to see the most recent neurologist, Dr. Lori Guyton, because she believes Dr. Guyton is “by far, the best doctor I have had.” Beyond the irresistible urge to move the legs or other parts of the body, RLS is often accompanied by unusual or unpleasant sensations that may be described as creeping, tugging, or pulling.

For others dealing with leg sensations keeping them up at night, Janet has a recommendation. She says, “While I would strongly advise anyone who has symptoms to seek medical help, I would also tell them they need to find a doctor who is willing to listen and be a partner in their treatment. I wish doctors and providers would believe that there is such thing as painful RLS, and that RLS is a totally miserable and debilitating condition.”

One silver lining through Janet’s journey with RLS has been the connections she has forged. Through an online RLS support group, Janet has connected with other patients around the globe. “I am in touch with another RLS ‘victim’ from Australia. And I have become very good friends with a woman who also lives in Missouri who is like family to me. We visit each other as regularly as possible.” Janet also cites having a ‘wonderfully supportive husband’ as a bright spot.

When asked about the most difficult part of her life with RLS, Janet offers a solemn reply. “Other than suffering from RLS, which is difficult in itself, having people not believe there is something wrong with me is painful. I had a friend tell me that I fake RLS to get attention, which is so incorrect. I would not wish RLS on my worst enemy…”

Though Janet’s RLS symptoms have an impact and consequence on her driving, traveling, ability to sit at a play or movie, and more, she tries not to let it rule her. “I try not to let RLS ruin my life. For the most part, it hasn’t. But it’s always there with me. I will never forget what a woman in our online support group said: ‘Just once, I wish I would see the sunrise because I want to, not because I have to.’ Now I make the decision to appreciate the small things. I enjoy the beauty of a sunrise because I choose to.”

To support future education and research of restless legs syndrome and other neuromuscular and movement disorders, consider donating to AANEM’s American Neuromuscular Foundation, where every dollar raised directly funds research.
 


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