Refractory RLS and Opioids: My Success Story, So Far

Restless legs syndrome (RLS) is a long journey and treatment can be frustrating and ever-changing. There may be no magic cure as of yet, but hopefully, we can each find enough relief to relax and get some much-needed sleep in the meantime.

Opioids as a treatment for RLS is an oft-debated subject. They may not be an option for everyone for a variety of reasons, but for some people, this can be a life-changing treatment. I wanted to share my personal story.

Treatment trial and error

I had suffered nightly with RLS since I was a small child, but I was not formally diagnosed until I was in my early 30s. I was referred to a neurologist, and for the next few years, I was tried on all of the available treatments at the time. Gabapentin, a number of different dopamine agents, and benzodiazepine, to name a few.

Unfortunately, they all offered me little relief with intolerable side effects. I felt defeated and didn't seek treatment again for years.

20 years of RLS relief

I've now been on the same opioid for 20 years, with a switch over to an extended-release version last year. I have never needed to increase the dose in all that time. Before starting an opioid, I had RLS every night. Now I may have mild symptoms 1 or 2 nights a month.

We've probably all experienced a treatment that seems like a miracle at first, only to end up back at square one a few years later. That is a scary thought to me, and I am doing everything I can to prevent that from happening this time. That includes never taking more than is prescribed, even on the rare bad night. Not only do I want this to continue being successful, but I also do not want to lose the trust of my physician.

Concerns about opioid addiction and abuse

Opioid doses prescribed for RLS are much lower than for pain management, and I personally have never experienced any sort of "high" from my medication. I know that there are concerns about addiction and abuse. Rightly so, and I take that seriously too. Risk assessment tools and open physician/patient dialogue are important.

I began participating in the RLS/Opioid Registry study 3 years ago. This study hopes to track patients for 15 years and will be a wealth of information when concluded.

Lack of awareness about opioids

Occasionally I do encounter some of the stigma attached to opioid use. That can be painful, and I hope that will end with more awareness around the responsible use of opioids as a treatment for RLS.

Do you use an opioid to treat restless legs syndrome? Have you found relief? Do you ever encounter stigma? We would love to hear more! Share your story or tell us more in the comments below