Restless Legs Syndrome (RLS) Discussion Board

If you take an opioid for your RLS and live in the US, PLEASE participate in this public comment opportunity. This is a chance to change the federal government's approach to opioids and get a change to the current CDC "guidelines".

Decision-makers at the US Department of Health and Human Services (HHS) are requesting comments from patients who use opioid therapies to manage their chronic conditions. Agency officials want to hear from RLS patients on how they manage their condition, and barriers that are affecting their access to treatment. Make your voice heard.

https://rlsfoundation.blogspot.com/2019/01/action-alert-you-must-speak-out-by.html?fbclid=IwAR3eIUyEfaFPQTOt_azrxm1VIrUd4PxizkEFCqjo6cWYFbMICeuO1Z4c3xo

Thanks for posting! I saw it when I was out and about and forgot to post when I came home!

If you haven't already participated in the public comments to the US HHS task force for modifying the CDC opioid guidelines, please do so NOW!!! Every voice counts on this matter. Don't rely upon others. You can even have your comments signed as Anonymous.

There are currently almost 1300 comments (both for and against) and over 100 of these mention RLS. This means that our responses are disproportionate to the chronic pain community, but HHS already knows about them. The draft report doesn't even mention RLS as another condition that requires opioids (they do mention sickle cell anemia) but does appear to be a major step in the right direction. We need them to understand that we also need help and that we need to be mentioned.

Opioids are one of the best treatment options for any kind of RLS, especially when you have daily symptoms that can be described as painful.

I've taken opioids for over 6 years now and they are still effective while my dose is stable. After monitoring the stories of others, I can only conclude that opioids are a safe long-term treatment for RLS with low risk for addiction and tolerance. And even when you develop some tolerance over the years, there are plenty of ways to manage, including switching to other medications for a few weeks to "reset" the receptors and the tolerance.

Especially Morphine would be a very cheap treatment option, compared to those expensive dopamine agonists and antiepileptics like Lyrica or Horizon.

Personally I would not be able to life at all (!) without opioids.

Also after two weeks of daily THC at night I noticed that Cannabis has strong analgesic properties when it comes to RLS related pain symptoms. I was able to cut my dose by 1/4 in the past week.

I wish that every RLS patient had easy access to opioids. Compared to all the problems and side effects of the other drugs I believe opioids are the best treatment option for the more severe cases of RLS.

Would I life in the U.S. ... I most likely would not be able to get a prescription for the dose necessary to manage my pain. Somehow this is a scary thought. I am thankful that it is up for the doctors to decide which treatment I need and not state laws, my insurance company or the CDC.

Btw: we have similar guidelines for opioids and chronic pain. However here in Germany they are understood in the way were intended: as recommendations that need to be carefully adjusted and weighed for every individual patient. Nobody here would develop the thought that now our state governments use these guidelines and put them into law. Somehow it seems insane that every state has its own laws and regulations when it comes to opioid treatment. I see no reason why they should not be the same in the hole country.

I really hope the situation in the U.S. will improve for RLS patients in the next years.

Thanks for the reminder, going to do this today. This is very important, and it’s key that we be clear that we’re utilizing opioids in a different manner altogether than the chronic pain community, at generally far lower doses, and that tolerance and misuse issues appear to be far less common among RLS users (though in actuality genuine opiate abuse among properly diagnosed and treated patients of ANY kind is quite low, far lower than the current hysteria would lead one to believe. That said it’s even lower in our particular community). The problem is that it’s become a political football, and politicians who actually care very little about the issue, and even less about the patient community, will exploit it, to say ‘look how tough I am on those horrible opioids!’ and we’ll be colllateral damage. When in fact the large majority of overdose deaths are from hardcore addicts/abusers injecting heroin obtained (obviously) on the street (which by the way is an opiate, not an opioid...they haven’t even named their ‘crisis’ correctly!) Well that is not acceptable, that’s not how medicine should be practiced in a civilized society, and we MUST stand up for our rights. For many of us this is without hyperbole close to a life or death matter. Stand up make your voices heard here, and to your representatives at both the federal and state level.

Too bad non opioid RLS patients can't chime in and have a say. Some of us will likely be prescribed opioids in the future for our RLS.

To these awful 'guidelines': 2 weeks ago I had a tooth extraction resulting in a dry socket (dry sockets are very painful). After I rifled through 15 tablets of hydrocodone, doctor told me pharmacy wouldn't fill any more so I spent 4 more days in pain til finally the doctor relented and filled a script for me.

I have looked at some of the comments that have been made by RLS patients and there are a few that are from individuals who are not yet taking opioids, but expect to in the near future. Since this is a public comment forum, I wouldn't let the fact that you are not taking them at present deter you from adding your 2 cents. At worst, they ignore your comment and at best you would add to our count (which remains around 10% even though it is supposed to be for chronic pain).

Thanks Steve. I submitted my 2 cents though I think it's more like 20 bucks.

I just posted my comments. Please comment today if you use opioids or even if you don’t currently use opioids but have RLS. You may need them in the future and they could easily be taken away from us.