Restless Legs Syndrome (RLS) Discussion Board

Don, I expect that almost everyone here will be in total agreement with what you said in your rant.

Here is my rant. RLS is not taught in any medical school even though it is estimated to hit about 15% of the population of the US (and probably Canada). Any doctor that treats at least six patients of European ancestry is almost certain to have a least one patient with RLS. Their only source of information is usually the pharmaceutical company reps, who are pushing their DA products. Although doctors have continuing education requirements to maintain their licenses, most prefer to choose courses in locations such as Hawaii, Orlando or Anaheim so that they can play golf while their family goes to the Disney parks. The RLS experts are doing what they can to publish in medical journals to educate doctors, but those who are like yours, simply don't want to learn anything new that might complicate their existing practice. Patients push for more research. They would be better off if they pushed for something that required GP level doctors to become educated in the proper diagnosis and treatment of RLS, which would benefit a large segment of the population (and yes, I have discussed this at length with the Foundation leadership who are doing what they can).

Rustsmith wrote: Sat Mar 22, 2025 4:42 pm Patients push for more research. They would be better off if they pushed for something that required GP level doctors to become educated in the proper diagnosis and treatment of RLS, which would benefit a large segment of the population (and yes, I have discussed this at length with the Foundation leadership who are doing what they can).

I totally agree, Steve. While new knowledge from research is desirable, what is needed most is getting current knowledge to doctors. Finding a cure is a long shot, but the lives of many RLS sufferers could be immensely improved, if doctors were better educated about RLS. I'm glad to see you have been pursuing this with the Foundation. Thanks for your efforts.

I 100% agree with your rant, Don! I'm in Canada too. From my perspective, it seems that doctors only look at their databases and if the information isn't there, they don't use it. For instance, I tried to give my GP a paper once - I forget which one, one of the classic WED/RLS papers that was only a year or two old at the time - and she wasn't interested in it because it wasn't accessible thru her papers database. \

Don, I totally agree with your rant. One thing I have done is give doctors the document from the restless leg foundation for doctors. There is a RLS treatment algorithm from the Mayo Clinic. I have been giving that to doctors lately. Some receive it better than others. Dr B and Doctors who are not part of Mayo Clinic have also contributed to this document. One problem I have found is restrictions from State Medical organizations. We recently moved to another state. I was taking a small dose of alprazolam during drug holiday from the opiate I was taking. Some people don't have to take drug holidays. But I do. I learned this several years ago when I was taking hydrocodone and it just stopped working after 4 months. They tried switching me to morphine but that did not work either. The only thing that worked was a drug holiday. As my condition has worsened over the years these holidays have become more and more difficult. Anyway my new state will not allow me to take alprazolam if I am taking an opiate even if it is a small dose. This seems so absurd to me. People's bodies are so complex and differ so much. If I am already using a medication combination with some success why all of a sudden forbid it? And what is the basis for this rule anyway? Is it based on research? Why be so rigid? I have found that the alprazolam seems to help the gabapentin work better on my drug holiday. The drug holidays have been much more difficult without the alprazolam.

Steve

The problem is that opioids and benzodiazapines (alprazolam, clonazapam, etc) are both central nervous system (CNS) depressants and their CNS effect is additive. I should add that gabapentin is also a CNS depressant as are some muscle relaxants and alcohol. Taking too many CNS depressants at the same time can depress your natural reaction to breathe, especially while sleeping at night. One way to commit suicide was to overdose on alcohol and xanax (aka alprazolam). That has killed many movie stars and other celebrities over the years, eg. Marilyn Monroe.

Personally, I take methadone, clonazapam and gabapentin, but I also use a CPAP machine every night and every single time that I visit with my neurologist, she not only asks me to confirm that I am faithfully using my machine, but she wants to know what my machine's numbers say (AHI, etc) since I own my equipment rather than renting it from a home durable equipment supplier that can send reports to her.

Thanks, for the vast insight on the connection of major CNS depressants and different ways movie stars have committed suicide, hopefully this will stop or help others others from falling victim to said medications. I'm not exactly sure of the numbers but there are lots of people whom have fallen victim to this terrible disease "Restless Leg Syndrome" ..everyone learns how to deal with it in their own ways, hopefully anyone required to take enormous amounts of multiple types of "Central Nervous System" depressant type drugs have the required rescue medications on-hand in the event of an accidental overdose. Becoming dependent on CNS Depressants can lead to the pathway of addiction, so be "Extremely Cautious" ensure your symptoms validate your actual need of these many different types of medications. Good to hear you are using your CPAP as required, "Outstanding" example for others on this site because CPAP USAGE is important while dealing with almost any type of illness...I know I use mine nightly and it diffidently helps my physical and mental health....