Let Me Introduce Myself

Hello, my name is Ray, and I live with restless legs syndrome (RLS). I also have been diagnosed with endometriosis, fibromyalgia, and irritable bowel syndrome (IBS). I have joint hypermobility (JH) but haven't officially been diagnosed by a doctor; my physiotherapist told me I suffer with JH.

It hasn't been easy being young and living with multiple diseases. When my health took a major dive almost a decade ago, I lost all my friends. I decided to turn to the internet and started talking about my health issues on Twitter and Instagram. I have always been of the belief that I don't want others who are in the same boat to feel alone.

Restless legs syndrome vs growing pains

When I first started experiencing RLS at age 9, it would only really be an issue at night. I would be laying in bed trying to fall asleep but my legs felt like they were in constant spasm and agony. After a week or 2 of suffering, I went to my mom about it and was told it was just growing pains.

I didn't understand why growing had to make my legs hurt so bad, and yet looking back on it, I wasn't having a growth spurt at the time, or any of the other times I dealt with this new agony. Talking to other kids when I got older, I discovered their growing pains didn't feel like mine did.

Dealing with the pain of fibromyalgia

Soon after, I started experiencing fibromyalgia, and again when I finally told my mom about it, she said it was just growing pains. Little did I know at the time that I would spend the rest of my life checking my body to see if pains were an actual open wound, or if it was just fibro.

I looked forward to when I would stop growing so all these horrible growing pains would go away. I was never one who liked pain, I always avoided games or activities as a kid that would cause a lot of pain. I was deemed a wimp but now I know it was because of fibro.

The pain signals I was getting were being hijacked and made to feel so much stronger. I also started experiencing joint stiffness and pain around this time.

Sleeping trouble started in my teens

I was around 13 when I started having sleeping issues. I went from being able to fall asleep amazingly fast to struggling to fall asleep. I thought it was because I had recently started to develop a fear of falling asleep; the idea of losing consciousness became a scary concept.

I decided to meditate, something I had learned a couple of years back to help ease my mind. I was unaware my sleeping issues were actually caused by my diseases. Although meditation did help make falling asleep easier, it was still a battle.

What led to my RLS diagnosis

It wasn't until I was in my 20s and pursuing answers for pelvic pain issues that I was told I most likely have RLS. Coincidentally, pursuing answers for an issue with my breathing not always being autonomic is what led to my official diagnosis of RLS when a sleep study was performed at a sleep clinic.

I was also diagnosed with central sleep apnea in that study. None of it was just growing pains, none of it was just in my head.

How were you diagnosed with RLS? Did you start experiencing symptoms at an early age? Share with us in the comments below!