50 Years and Counting

My first RLS symptoms began at age 15. It felt like someone was tickling my left foot and ankle with a feather. This happened once or twice a week and kept me up all night. It was brushed off as “growing pains”. It wasn’t until my father was diagnosed with restless legs syndrome (RLS) when I was 20 that we all realized I had the same thing.

Facing my own RLS journey

My father’s symptoms progressed rapidly. He was placed on Requip, but no other options were discussed. I watch over the years as his symptoms took over his life and as he eventually augmented. I swore I wasn’t going down that path.

Rapid fire changes while pregnant

I researched and learned as much as I could, and I managed with non-pharmacological methods for years. Over time, there has been a gradual progression in the severity of my RLS. When I became pregnant with my son, the escalation of symptoms was like rapid fire. I quickly developed symptoms every night - always the left leg and occasionally the right. I was told it would settle when I had the baby. I wasn’t gaining weight because I would be awake throughout the night walking and then working full time with a 3-hour commute daily. Therefore, I had to stop working when I was 7 months pregnant.

After delivery, the symptoms decreased in intensity but continued every night. Over time, it started to occur earlier in the evening and occurred faster after laying down or relaxing in the evening. I held off on taking medications while trying different supplements, dietary changes, yoga, hot baths, electrical stimulation, compression pumps, and compression stockings - all the things every RLS patient has probably tried.

Trial and error with medication

At 40, I finally asked for medication and was placed on gabapentin. I spent 3 months as a sleepy, forgetful zombie as the dosage was increased. I never got used to the side effects, and eventually, I got seriously depressed and gained 25 pounds. I discontinued it and tried Lyrica with pretty much the same results. It took a year to recover from that. I was placed on selective serotonin reuptake inhibitors (SSRIs), which helped the depression, but worsened the symptoms. I was switched to bupropion and actually had some improvement, but was still only getting 4 hours of non-consecutive sleep a day.

I was placed on pramipexole which worked exceptionally well. I took half doses of the immediate release and didn’t have augmentation. After 2 years increased to 3/4 of a tablet. There was no change in the actual symptoms. 2 years later, I took the full dose. After another 2 years, I needed another increase. It felt like I was toeing the line to augmentation and did a rapid wean.

I got creative while managing my symptoms

It has now been a year off of pramipexole and the symptoms continue their slow march forward. I take some supplements and occasionally THC, and then I pace. Recently I jimmy-rigged an inversion table and I slept at a 45-degree angle. It keeps weight on my feet so the symptoms decrease, and I do manage a few hours of sleep that way as weird as it sounds. I’ve hit the stage of hyperarousal, so I’m never sleepy even if I’ve only slept 3 hours for several days in a row.

What's next for me?

I don’t know what will come next. I am scheduled with a sleep specialist in a few months and have been put back on oral supplements at the request of that doctor. While it didn’t help before, I’m keeping my fingers crossed. As I didn’t have significant augmentation, I may try the pramipexole again for the next year before I retire, so I can keep going at work. After that? Not a lot of options left other than opioids, and I am still very resistant to that.

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