Thinking Back on Just When My RLS Onset Actually Happened

I was diagnosed with fibromyalgia when I was 20 years old, and I am now in my early 40s. Restless legs syndrome (RLS) is a sleep disorder that can occur with fibromyalgia, among other sleep issues. Just a nice cluster of not-sleeping fun, really.

It takes a bit to be diagnosed with fibromyalgia. A lot of random tests to exclude almost every known condition in existence, and it takes an average of 5 or so years.¹

Pain issues since my childhood

I know I had pain issues since childhood due to joint hypermobility syndrome. I speculate that somewhere around the age of 16, fibromyalgia entered the picture because that is when my sleep became so much worse, fatigue was a major issue, and pain was more than just around the joints.

It is strange to think about now, but I had early indications of RLS when I was younger as well. It makes sense since my RLS is quite severe now, and it must have been mild at some time in the past.

Delayed-onset insomnia

The main sleeping disorder that caused me the most problems with fibromyalgia was delayed-onset insomnia. When I actually did sleep, that sleep was always poor quality sleep due to the very nature of fibromyalgia. Then I never stayed asleep for long and woke up frequently.

However, that delayed-onset insomnia was insanely frustrating to me because it would take 2 to 4 hours to fall asleep. The older I got, the worse of a problem this became for me because the world does not run on sleep time that my body wanted.

My body wanted to fall asleep at 4 AM and get up at noon. And even then, I woke up frequently and the sleep was poor quality, but that was the actual timeframe my body wanted to sleep. But since reality doesn’t work that way, I would fall asleep at 4 AM and have to get up at 7 AM, and this was a huge problem.

Issues from unrefreshing sleep

I had massive sleep deprivation issues. I ended up getting frequent episodes of sleep paralysis, sometimes 5 times a night. Hypnic jerks were also very frequent. Daytime sleepiness was, obviously, an issue for me.

I tried almost every alternative sleep remedy in existence. I know them all. Even before Google existed, I knew them all. Every step to sleep hygiene was mastered as well. I did everything and nothing ever worked.

Jittery, nighttime leg shaking

Here is the thing, in these hours of not sleeping, I would be jittery, I guess I could say. I would shake my legs or feet constantly. I would rock my body and shake my legs. Because I was restless and it seemed to help me relax. And if it helped me relax, I figured it would help me sleep.

Sometimes it just wouldn’t help me relax, and I would get up and do something to distract my mind and start all over again.

The 'trick' to get myself to sleep

And I did this leg/foot shaking, body rocking thing into adulthood. I did it even when I was put on sleeping medications, which one would think would help me sleep quickly. But for someone with such embedded sleep issues, they really didn’t work fast or that well. So I still did the same behaviour. I always thought it was just a "trick" I used to get myself to sleep.

So when did my RLS really start?

Yet, now I really question that since it is exactly what I did with what I called moderate RLS symptoms. And what I try to do with the more severe symptoms, but it isn’t effective for that level of intense sensations.

It wouldn’t be unusual to have RLS in my early 20s. It can occur with fibromyalgia. My father also has RLS and fibromyalgia. I remember that some of the things I took for sleep when I was that age worked fairly well for me, and one of those combinations did include magnesium. So that might have helped with any milder symptoms of RLS I had.

A combination of sleep issues

The RLS would have been completely overshadowed by the other sleeping issues I was having at the time, as well. If you literally can’t fall asleep for hours, it really doesn’t matter if your legs feel a little restless. You’re not sleeping regardless.

It is interesting, though, to realize those habits I had of shaking my legs, my feet, or rocking may have been indications of mild RLS early on.