My Personal Battle with RLS

Buzz Lynds, Founder: My Story

I have Restless Legs Syndrome (RLS) and have had it for many decades. I struggled for many years, not knowing what I was experiencing was a recognized serious disease.

Once I learned that there were medications for my problem, I was ecstatic at the thought of being able to sleep well again. My doctor prescribed Requip (ropinerole). Initially, it began working after a week, and I did experience some relief from the nightly antsy demon.

Several months in, my wife began mentioning that I would ‘nod off’ often, sometimes in the middle of a conversation. There were some other side effects that affected areas of my life that I had control over by self-control or convictions. Though the warnings mentioned this med should not be prescribed to anyone with a known gambling problem, no other warnings were mentioned, but I learned any area such as eating or anger for example were impacted. Inhibition levels were generally lowered without you noticing… I didn’t realize it, but my wife did.

After I stopped taking the medication, my symptoms returned with a vengeance. My usual remedy was to overstimulate my calves by beating on them. I found it easier to sleep with pain rather than restlessness.

Every evening as I began to slow down, laying aside the business and distractions of the day, my legs began to get a little restless, and by the time it was time for bed my legs were in party mode! Just the thought of going to bed and fighting with that demon of restlessness distressed me. Knowing that the only way to sleep was to get so exhausted fighting my legs left me tired all day. My work and relationships were affected negatively, but the feeling of hopelessness became all-consuming.

One night my RLS symptoms were so severe I woke up and grabbed one of my calves and the symptoms stopped, and my thought was “I can’t hold this leg all night”. I got up, went down to my workbench to look for something that might closely simulate the pressure. After a quick search, I found a couple of straps of Velcro. The makeshift contraption helped a little but was not the solution, but it got me thinking of what else might work better. Within a couple of weeks, I had an initial device that worked fairly well.

We all deal with the result of idiopathic nerve signals running wild in our muscles. The medications we use affect our whole system, where what we need is very localized relief.

I began using the simple wearable device that works on the specific, localized areas of the symptoms, primarily calves and forearms (at least that’s where I mainly suffer). At the time, I called the thing my Tamer because it tamed my RLS symptoms. Initially I made the device to apply pressure on my leg like my hand and fingers did that first night, but because the material I used was heavy and hot it became a bit uncomfortable, so I loosened the adjustable straps… It seemed to work better. Later that night I loosened the straps a little more and I had more relief, I finally loosened the straps to the point of being floppy, just resting lightly on my calves, and my symptoms totally went away! I did have to go through a learning curve to get the desired relief.

It took a while to learn all the nuances of the devices and what was going on, and I still don’t know exactly why it works the way it does. And I don’t get total relief every night, but I can control the symptoms to a very manageable level. I wear my Tamers every night, and I sleep very well most nights. I don’t know what causes my legs to go ballistic those few nights, but I can still knock the edge off enough to get some good sleep.

The Tamers gave my life back to me. Then I wondered if it would help others as much as it did me… that’s entirely another story.

Buzz