A Lifetime of Dancing

I probably have had restless legs all my life. I’m almost 72 years old. It’s a family curse. My son, a now-deceased uncle, and one of that uncle’s grandkids also have or had RLS.

Memories of my restless legs

I was told I rocked my crib as an infant, one time managing to get my crib wedged just right to block the closed doorway. The fire department were able to get into my room through a window.

I was told I would not sit through meals but preferred to walk around the table eating food that was offered to me. On vacation once, I was sleeping with my grandma and remember her waking me to tell me to stop kicking her. The remainder of the trip I slept with my brother.

Diagnosis in adulthood

I remember flying on a red eye with my daughter. A stranger was at the window seat. I was in the middle and my daughter in the aisle seat. It was quiet and dark. My legs became very restless and moving them was the only thing that gave me any relief. I didn’t want to cause any kind of disturbance that could awaken other passengers and just kept moving them while sitting there. I was miserable. I thought to myself, "Is this what RLS is like?" Torture is the word that comes to mind when describing this creepy crawly I-must-move-my-legs feeling.

I didn’t have any further incidents for a few years. In 2007 after being awake for the third night in a row because of the creepy crawly feeling, I approached a co-worker, a doctor I worked with in an urgent care. I was in tears and, having diagnosed myself as having RLS, I asked for her help. This began my nearly 20 years now of a new way of living.

Trouble with treatments

I developed augmentation. I had to take an afternoon dose of my medication if I was going to do anything that required sitting for a prolonged period of time, as at plays, conferences, movies, concerts, travel etc. If I forgot to take a dose of my medication, I’d be standing up somewhere, usually in the back of the room marching in place for the duration.

I suffer from chronic pain. I’ll take pain any day over RLS. Getting older, I've had thoughts of, "What if I can’t advocate for myself someday and have to endure this torture without respite?" My depression worsened. I thought about taking my life before I’d find myself in such an awful situation.

Finding hope through honesty

I’d been working with a therapist and finally came clean about the nightmare I feared. Why I wanted to hide my thoughts is a puzzle. I’ve also been working with a movement disorder neurologist at the university in the state I live in for almost a year now. I have hope again.

My RLS isn't stable yet, but between IV iron infusions and changes in medications my symptoms are more controlled. (My antidepressants, I’ve been told, could be a factor in my RLS. Ugh, of course -- hit me when I’m down. Sheesh.)

With support from my neurologist, his medication therapy management pharmacist, and my being more open and honest about this horrible syndrome, I’m much less anxious and my depression has improved. I make no promises as to what my future may bring. I’m a work in progress. I’m in a better place for now, anyway.