Painful RLS and RLS Progression

I wonder sometimes about restless legs syndrome (RLS) progression and why it becomes painful for some people and not other people.

Why is it progressive in some of us and not in others? I wonder if those of us who get worse over time will progress to painful RLS eventually? Is that inevitable?

My painful RLS progression onset

I took a big leap into painful RLS because for 6 or 7 years I was on slow-release tramadol for my chronic pain issues. That completely and utterly managed my RLS, so it was a non-issue for me during that time.

When I went off tramadol and my RLS immediately returned, it came back severely every night and painfully.

Prior to that, I had nights where it was severe and painful, but not every night. Definitely never in the day. So for me, the progression included increased intensity, pain, and increased duration.

What research says about painful RLS

As many as 24 percent of people with RLS in past studies have reported painful RLS symptoms.¹

This holds true for me as well. My symptoms got more severe and painful over time. My sleep has been far more disrupted, and this has led to a lot of daytime sleepiness. I have this device tracking my sleep now and, basically, it says very "disturbed" sleep and not much deep sleep. (Yeah, I know.) All of this means I am pretty dependent on medication despite all the things I do to help control my RLS.

It makes me wonder if painful progressive RLS may be clinically distinctive. That is something researchers will have to have fun with.

Same comorbidities, different experiences

What role does the progression of RLS take? I am very curious about this. Mostly because I am on that road.

My father and I both have some similar health conditions. We both have fibromyalgia. We both have chronic migraine disease. We both have a history of major depressive disorder. We definitely both have an extensive history of insomnia, even outside of insomnia caused by chronic pain. If those were the triggers for our restless legs syndrome, you might suspect we would both have a similar progression into severe intensity.

That isn’t the case at all. My father definitely has RLS. His never progressed and has stayed the same severity. He treats his RLS with magnesium. I am sure some of the sleep aids for fibromyalgia might help as well.

My RLS spread to other areas of my body

My RLS was pretty consistent as well for some time, but then it moved from the legs to other parts of the body, like my arms and torso.

Then it definitely became far more intense — progressed to painfully intense. Finally, it started dipping into daytime hours as well.

If not our comorbidities, then what?

If it isn’t our comorbidities, then what could cause a person's symptoms to progress in severity until they have such painful RLS?

I think there is a genetic component. My father has RLS. My mother had RLS as well when she was younger because of anemia.

Why my condition has become so severe, I do not know. My ferritin levels are not at the recommended levels, but I am not anemic either — although perhaps it is our iron store levels that actually are to blame. I wonder what research will show.