Restless Legs Syndrome (RLS) Discussion Board

I may made some progress with the local medical establishment that will allow my RLS to be treated locally as opposed to driving 100 miles each way to Denver each quarter.

When we moved to Colorado, I learned that none of the GPs nor any of the neurologists was willing to prescribe opioids for chronic conditions. The best that they could offer was a referral to the Univ. of Colorado Medical School in Denver. Although I have been extremely happy with my doctor in Denver, having to waste an entire day driving up and back to see my doctor is starting to get old. I especially worry about my appointments in the winter since the interstate highway headed north gets closed occasionally where it goes through a pass north of Colorado Springs.

I have also been becoming much more outspoken about how patients who require opioids are treated. So, after my last trip to Denver, I placed a call to the Patient Representative office of the hospital where my GP's clinic is located. 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.

I finally received a reply yesterday afternoon that there had been a "misunderstanding" and that they would be able to provide me with methadone. The woman said that I would need to come in to discuss my situation with my GP, but then realized that he will be graduating from their residency program in 6 months, so they are going to reassign me. She also said that my new doctor will discuss the requirements of their opioid contract, which I will be required to sign. At this point, I have a wait and see attitude. I have severe reservations about some of the terms she said are in their contract, which I find highly distasteful and offensive (which I intend to tell them). I suspect that they are hoping that I will shut up and go away now that I can get my local prescriptions, but they won't be so lucky.

Well done Steve, The squeaky wheel gets the oil.
And you are making a path for others.

They just think every one is an addict. It is unfortunate. I hope you succeed though. My husband won't go back to the pain doctor because of the way they treated us, even though he might have been able to help him with maybe an implant, etc.

I am so grateful that you can stand up for all of us like that. I have such a hard time facing prejudice and go mind-blank, never able to think of the right replies until long afterward. It's so important that we challenge people's presumptions and inform them of the existence of our disease. S

he also said that my new doctor will discuss the requirements of their opioid contract, which I will be required to sign. At this point, I have a wait and see attitude. I have severe reservations about some of the terms she said are in their contract, which I find highly distasteful and offensive (which I intend to tell them).

Good!

In some ways I pity the poor resident who is going to get caught in the middle of this. He/She isn't responsible for the policy but will have to follow the hospital's line. Since I have a pretty good idea what the contract is going to say, I have already started work on an addendum. If I have to give up some of my rights as a patient, they are going to have to agree to some of my terms as well. I will be addressing things such as minimum detection limits and false negatives in the urine test, working with me to provide prescriptions sufficiently ahead of my vacations and holidays so that I won't run out (without needing to dig into my stash), and agreeing to make all reasonable efforts to find another local physician for me if they decide to terminate the agreement for ANY reason. When I get finished, it will be a two sided agreement with each side having to give something.

Oh, I also already know that they have a clause about marijuana, which is a political thing with the hospital. That one is definitely going to require compromise on their part!

Good for you! I cannot help but think about all the people who wouldn't have the ability - for whatever reasons - to do what you are doing.

Steve, that is a really thorough addendum.

Steve, we are lucky to have an intelligent, well informed advocate for opiods for those who need them and don't/won't abuse them. In the past some docs gave out prescriptions for things like oxycodone like they were m&ms and addiction resulted in some cases but nobody can tell me any doctor is prescribing fentanyl for ordinary ambulatory patients. The current addicts are obtaining their supplies illegally. My husband had fentanyl during his last week of life—patches, subdermal and through a pump. Even though he was close to death the supply was tightly controlled. He got enough, more as needed but not a molucule more.

Thanks for the kind words everyone. It still remains to be seen whether I can get the clinic to agree to my terms, which really should be too unreasonable for them. If I am successful, I will post my addendum so that others can adjust it for their own use.

Steve, at least you're trying. And how thoroughly, too! It's bound to have some effect, hopefully the one you intend, but even it's just a few more people thinking twice before they make assumptions, that's something too.

Went to the appointment with my GP this morning.

The clinic insisted that I sign their opioid contract without any modifications. Although my doctor admitted that there were several totally incorrect statements, such as "I understand that I have a chronic pain problem" and "I understand the eventual goal of tapering the opioid medication", he checked and was told that they would not allow any changes. He agreed that I was being asked to sign a one-sided contract that contained errors and misrepresentations, but apparently their attorneys told them there could be no exceptions.

I did learn quite a bit about these contracts during my preparations.

1) they are not legally defensible because you are being asked to sign under duress. The doctor is threatening to withhold treatment unless you sign, which is the same thing has holding a gun to your head to sign away the title to your car or home.
2) the minimum detection limit for methadone is not much less than what can be expected for urine samples if you are on a low dose. This means that there is a very real chance of a false negative if they demand a compliance test. And this is assuming that the analytical equipment is well maintained, calibrated per the manufacturer's recommendations and the test is performed correctly, which are all big IF's considering what is at stake and the demands on this equipment at many labs.
3) the lab analysis for opioids does not detect methadone or it's metabolites. A proper methadone analysis requires four analyses, methadone, EDDP (the metabolite), creatine and pH. Without all four of these analyses, it is not possible to accurately determine whether you actually took your pills or not.
3) the contract had a couple of clauses that I had to come in within 24 hrs of either receiving a phone call or them leaving a message on my phone. When I asked about what happens when I am on the road and often don't receive my phone messages for days at a time, they just shrugged.
4) Agreements such as these are totally one sided. We are asked to give up certain rights and the doctor or clinic agrees to absolutely nothing beyond providing a vague "treatment plan". If that plan calls for tests, surgery or medical treatment that is completely outside the scope of treating our RLS and we refuse, that is grounds for immediate dismissal. So, the clinic could tell you to have an MRI performed at their site to help them pay off the investment in their machine. Under the terms of these contracts, your RLS treatment could be immediately terminated If you refuse.
5) If they do decide to terminate your treatment for any reason whatsoever, you have no recourse and your only option is to start looking for another doctor.

Very much a poisoned chalice in order to receive appropriate treatment. So many what ifs, with no answers.

So sorry it came to this. What is your next move?

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.

Congratulations on being so proactive.