I can’t remember the last time I went to a concert or movie––afternoon or evening––when after awhile, one of my legs wouldn’t constantly demand that I move it. And trying to keep it moving all the time is tiring and irritates those sitting on either side of you.  If you don’t move it, the involuntary jerks will really irritate those around you.

I can’t remember sitting down to watch TV or to read in the evening without getting up every little while and walking––usually in circles in another room, so as not to bother anyone else in the room.

I can’t remember traveling by car without having to get out and walk every couple of hours and walking at least 15 minutes each time.

I can’t ever remember riding on an airplane as pleasant. If I get up to walk, the stewardesses keep an eye on me. If it’s a large airplane, I move to another section, but eventually, I get caught and asked to sit. Overnight flights are killers. Not being able to get comfortable in the tiny, cramped seats is bad enough, but the real killer is the constant need for leg movement.

Sleeping at night in my own bed was not a problem for me until I underwent five months of heavy-duty chemotherapy. From then on, sleep at night has become a problem––not every night, but at least four nights a week. I would get up and do exercises and then walk. Finally, I found that about 300 steps would do the trick. And I would try to get to sleep before the exercise wore off. Some nights, I would be up walking three or more times.

The absolute worst night for me was when I had my total knee replacement surgery on January 28, 2020. I awoke from surgery and had some food, and they even got me up and had me using a walker to the bathroom. Then as darkness fell, I tried to sleep, but my surgical leg demanded movement, which was difficult since it had blankets keeping it in one position and the other leg was hooked up to a device that kept compressions running up the leg, to discourage blood clotting. Every eight to ten seconds, I would endure an involuntary full leg seizure. I so wanted to get up and walk, It was the longest night of my life.

The next day the physical therapist kept trying to get me up to do exercises, but I was dizzy, nauseous, tired. The next night, I slept for a few hours before the surgical leg demanded movement about midnight. I rang for the on-duty nurse and she walked with me and my walker for at least 15 minutes. I slept. Two hours later, she did it again. Then I finally slept for hours.

When you tell someone you have restless legs, they often think it’s on occasional twitch that is no big deal. Some people don’t see a doctor because they don’t think they’ll be taken seriously.

Restless legs syndrome (RLS) is defined as a condition that causes an uncontrollable urge to move your legs, because of uncomfortable sensations. It usually happens in the evening or nighttime when you’re sitting or lying down. And moving stops the sensations temporarily.

I’m not the only one afflicted, about 30 million Americans have RLS with symptoms ranging from mild to severe. In my case, I’ve had RLS since I was about 12. And by now, my symptoms are considered severe.

Causes include certain medications; pregnancy; heredity: and certain diseases such as Parkinson’s, iron deficiency, kidney failure, diabetes, and peripheral neuropathy.

RLS is also known as Willis-Ekbom disease. It can begin at any age and worsens as you get older. For some, it is barely noticeable, and for others, it is incapacitating.

Most people describe RLS symptoms as abnormal, unpleasant sensations in their legs or feet. They usually happen on both sides of the body. In my case, it could be either leg but never both at the same time, thank goodness! Less commonly, the sensations can affect the arms.

The sensations, which generally occur within the limb rather than on the skin, are described as crawling, creeping, pulling, throbbing, aching, itching, and electric. They are rarely described as muscle cramps or numbness, but always as a desire to move the legs.

RLS is generally a lifelong condition for which there is no cure, but that doesn’t mean it can’t be managed by lifestyle changes, supplements, and/or medication.

Lifestyle changes can include warm baths, massage, calming activities before bed, and no alcohol or caffeine in the evening.

There are a variety of supplements. I tried one for years, and it did not do much. I went online recently and found five newer ones that are recommended. I will try the top rated one.

Medications include four types. 1) Anti-seizure drugs like Gabapentin, which is the first line of defense, 2) Dopaminergic agents, which increase Dopamine effect and are used to treat Parkinson’s, 3) Opioids for severe RLS that doesn’t respond to other medications, and 4) Benzodiazepines, which is the last line of defense and has side effects of daytime sleepiness, reduced energy, and affects concentration.

Since my RLS is now considered severe, the doctor prescribed Gabapentin. I was on it for almost five years and the doctor increased the dosage when it could no longer keep up with my symptoms. The last few months that I took it, it really  didn’t help at all. This past March, my doctor switched me to Pramipexole, one of the dopamine related medications. It worked for a few hours each night but was not strong enough for the whole night. I saw my doctor last week, and now I’m taking the same dosage but twice a day. And I have had no symptoms for a week. Can’t remember the last time that happened. I can’t adequately describe how wonderful that is.

The problem, however, with the Dopamine related medication is that while they are very good at managing symptoms, long-term use can cause worsening of the symptoms. That is why I’ll be checking out the supplements also.

So when someone says they have restless legs, take it seriously. It’s probably more than just an occasional twitch!