Restless Legs Syndrome (RLS) Discussion Board

That makes me so angry I could hit something. How DARE they.

Rustsmith wrote: I asked who I could speak with to "appeal" the policy decision that prohibits their doctors from prescribing an opioid for a chronic condition. I also explained that their failure to provide medical treatment for my condition was exposing me to an increased risk of a automobile accident, which runs counter to things like their wellness program question about use of seat belts and home safety.

Now you're speaking their language! Give 'em h*ll! This is my type of advocacy!

One of the most horrible things about doctors is that they have the power of documentation. They can make you sound like a real jerk in the medical record. I am sorry you (like so many of us!) are going through this.

Can't recall if I posted it on here, but my new pcp at my first visit said "Pain meds are BAD. Benzodiazepines are BAD. These are just BAD medications for so many reasons." I so wish I had said in response, judgmental doctors are BAD. Those are quality of life-saving medications for me.

Better to drive than to deal with jerks. But I'm sorry you have to.

I gave an on-camera interview with one of my local TV stations this afternoon. I don't know how much will actually get on the air, but it will be broadcast on the 10P news on Feb 4 (after the Super Bowl). The reporter had been to an opioid conference earlier in the day and had also interviewed a pain management doctor. He seemed interested to hear about how the opioid crisis is impacting us, so I hope that the combination of the refusal of my local doctor to manage my care will get used. He also asked about my options if opioids are not available, so I explained that the alternatives are either cutting edge research which won't be available for several years (even if they work) or options like no RLS treatment (i.e. no useful life, no more local volunteer work and an inability to provide care to my disabled wife), street drugs or suicide.

Wow, Steve, just wow...thank you for doing this for all of us. So refreshing to see straight, logical, smart talk in the face of so much nonsensical ridiculousness.

Thanks, I needed that this evening. This past week has been a real emotional rollercoaster. It is almost like what I imagine it is like to be bipolar. The interview is for a fairly small market network TV station, and I won't know if I even get to make any of my points until I see the broadcast on Feb 4. I just wish that there was some way to get the message to a larger market audience so that we can start to counter some of the misinformation and foolishness being peddled by the major media outlets and the politicians. They make a BIG deal about opioid deaths, but completely ignore deaths due to alcohol and tobacco because those products pay big dollar taxes and advertising.

Steve, you are a wonderful flyer of the RLS Flag. Great comments.

I feel exactly like you, if I had no treatment for my RLS/PLMs. I probably can't see you on the news here. We get the Denver stations.

Rustsmith wrote:My next move is to go back to what I have been doing for the past 2 years, which is making the 200 mile round trip to Denver every quarter to see my doctor there and pick up my next prescription.

However, this may work out in the long run. After I posted my note this afternoon, I got a call from one of the investigative reporters for the local NBC television station. I had left a message on their website last month asking if they could do a piece on how the opioid crackdown is harming legitimate patients. We have an appointment on Thursday to discuss it. So, the refusal of the clinic to treat me will be one more fact that I can use to show how this is more than a simple inconvenience.

I said this before to you - you really are doing a service to all of us that I believe few of us could do. Thank you.

Thanks Ann. It is just incredibly frustrating to me right now. After a career where I either had the knowledge or the connections to make sure that things were done right, so that nothing bad happened and no one would get hurt, it is difficult for me to be faced with a combination of ignorance, uncaring acceptance and the very biased information being peddled by so many. And the fact that it could ultimately end up close to a life-and-death situation for so many of us makes it even more difficult.

Amazing, Steve!!! I hope you can get a cc of the clip and post a link?

We need an opioid march! Or a pain control march, in any case.

Yes to your comments re cigarettes and alcohol. I think I remember reading that there are more suicides annually than opioid ODs. Where's the "suicide crisis" rhetoric? It doesn't exist? Oh.

The other thing I am so disturbed by is how many people I know who buy all that crap and don't have critical thinking skills.

Steve I agree absolutely.

I am very organised and thorough, see things through to the end. Hate it if a job is done (by someone) in a half hearted fashion.

It frustrates me totally to not have answers, in particular to have seen a neurologist who couldn't have given two tuppenny damns about my symptoms, due to the fact that he agreed to see me even though (it turned out) he knew nothing about RLS. However, he knew how to take the ££££s.

I look forward to hopefully seeing a clip of your interview.

The whole opiode crisis cause and effect is blown so far out of proportion. Tom Petty died a few months ago and the cause was released last week—an overdose of fentanyl and oxycodone. No reputable doctor is going to prescribe enough fentany patches to OD on. The people dying from fentanyl overdoses are not getting it through medical channels and probably not the oxycodone either. You can't just bowl up to your pharmacy and say I'd like a half dozen fentanyl patches.

did it air? Did they keep the key comments you made?

I too am so impressed with what you're doing. I wilt in the face of adversity and criticism. Eventually I will fight back, but I can't seem to carry the fight to someone. I hope you don't give up, I really hope you keep going with this. But look after yourself, too.

EDIT: sorry , I just went back and checked, it doesn't air til Feb 4