My Restless Legs Syndrome Journey

I’ve had fibromyalgia since I was 20 years old, so I knew what restless legs syndrome (RLS) was. I have researched fibromyalgia for long enough to know every sleep disorder associated with it. I have only ever experienced chronic insomnia prior to RLS onset. When I developed RLS in my mid-30s, I wasn't aware that was what it was.

I already had severe insomnia, but it was being managed enough to get adequate sleep. Fibromyalgia has so many nerve sensations and pain that it is rather hard to pin down something totally new - outside of the box.

Paresthesia and peripheral neuropathy

I have paresthesia, and to some extent, I did wonder if it had something to do with that. My paresthesia can be pretty severe, causing strong tingling and even some numbness that can persist for years at a time. I have peripheral neuropathy as well in my hands. A lot of nerve sensations and symptoms to go around.

New nighttime symptoms

The new nighttime symptoms of severe leg and arm crawling feelings and nerve aggravation, to the point of the horrible restless pain, were extremely intense. When I got it, there was no hope of sleep.

I suppose restless legs syndrome didn’t occur to me because of the severity, and because while movement slightly alleviated it when I tightly compressed my limbs into a pretzel, I felt much better but still got no sleep. I usually just got up. It would keep me up in bed for hours, and I never saw the point in trying to sleep after that. Frankly, it seemed way beyond ‘restless’ to me.

Could this be RLS?

I was sent to a pain clinic for overall pain management and put on slow-release tramadol which, coincidentally, for me, resolved these symptoms. So I didn’t think anything more of it at the time. It could have been a temporary symptom, and if it is temporary, I do not concern myself or my doctor with it.

Not until I went off the medication, when it was no longer effective for me and these nighttime incidents returned abruptly, did I realize it wasn’t a temporary thing — that is, once I excluded the possibility it was withdrawal from the tramadol. Only then did occur to me that this might indeed be restless legs syndrome.

Nothing relieved my discomfort

All fine and good, but while I thought I might have RLS, I didn’t have a diagnosis. I tried a few things Google recommended, but most of those things I already did for fibromyalgia, migraine disease, or nerve pain. Clearly, those were not helping, or if they were, not enough.

For example, taking magnesium was suggested, but I already did this for fibromyalgia. It was just frustrating because it often disrupted my sleep quite a bit regardless. Disrupted sleep is quite a big deal in chronic pain management.

Confirmation from my neurologist

However, I do see a neurologist once in a while for chronic migraine management and to investigate possible multiple sclerosis. When I saw him I did then mention these symptoms. I mention anything out of sorts because he is trying to sort out if I present with MS or not.

It doesn’t confirm that I do have MS, of course. RLS can also be comorbid with fibromyalgia. He confirmed it definitely was restless legs syndrome, for me anyway. There was no doubt about that. Thankfully, he also gave me medication to try for RLS specifically.

How were you diagnosed with RLS? Do you have other conditions that cause nerve pain? Tell us more in the comments below!