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Restless Legs Syndrome

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why docs don’t want to prescribe opioids for RLS….😔

Kakally profile image
26 Replies

With all the recent total panic by docs on not prescribing opioids, I thought I would just attach Andy Berkowski’s excellent piece on why we are often being refused opioids now and almost certainly in the future at least for sometime.

You may well have read this article before

Kakally

Andy Berkowski, MD

5 Reasons Doctors Won't Prescribe Opioids for Restless Legs Syndrome

With the medical field moving (too slowly) away from dopamine agonists (DAs) as the mainstay of treatment for restless legs syndrome (RLS), opioids have become increasingly needed for moderate-to-severe RLS when first-line therapies like iron or alpha-2-delta ligand medications (e.g. gabapentin, Lyrica) have not been effective or tolerated. They seem to be needed the majority of the time in those with augmentation to get off the DA causing it. Why is it then that many patients with RLS find it hard to find doctors willing to prescribe them? Here we will assess the numerous reasons for opioid hesitancy (not to steal a COVID-era term) among medical professionals.

1. Opioids are potentially dangerous, even life-threatening drugs. The CDC (gosh, can’t seem to avoid these COVID-related hot button terms!) reports 564,000 opioid-related deaths from 1999–2020. Opioids at a higher dose than a person is accustomed to can cause the breathing centers of the brain to become impaired, leading the body to be unable to breathe for itself, possibly resulting in death. This is one of the many reasons I advocate for buprenorphine as the opioid of choice as its unique properties generally avoid this risk. If you overdose on your iron supplement, you probably get a stomachache, throw up, or get really really constipated. If you overdose on gabapentin, you may get loopy and off-balance. If you overdose on a standard opioid, you could be dead. In addition, opioids have a risk for chemical dependence and addiction. Given the relative dangers compared to other treatments, clinicians want to avoid prescribing them. 

2. As a result of the last point, clinicians are afraid of repercussions from writing opioid prescriptions whether real or perceived. You hear in the news of physicians having licenses revoked related to inappropriate opioid-prescribing or even going to jail for kickbacks and illegal money-making schemes. Doctors are afraid of something bad happening to a patient and then getting sued, particularly as society is looking to point the blame amidst the opioid epidemic. With careful patient selection, thorough education of patients, monitoring, and other good practice principles in place, these risks and those discussed in #1 are dramatically reduced, but providers’ perceptions may not be.

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3. The pendulum has swung too far to the other side. Maybe 20 years ago, we were handing out opioids like candy on Halloween. Strained your low back lifting a heavy pillowcase of the (aforementioned) Halloween candy without bending your knees properly? Here’s a few dozen oxycodone to help with the pain. Now? Opioids are poison. Lop off a few fingers with the chainsaw you used as an ill-advised prop during Halloween festivities? Well, anti-inflammatories and ice may be a better option. (As an aside, this post is clearly from January, so I have no idea why Halloween is on my mind. Maybe it’s because retail stores are already clearing the shelves from Valentine’s Day treats and even 4th of July decor to make way for the Halloween candy). The problem in this tribal, black-and-white, us-versus-them, post-COVID era is that the medical field may be applying a morality judgment to opioids now. That judgment is that opioids are evil.

4. Opioid-prescribing is a tremendous hassle. Aside from having to spend considerable time discussing the above risks and vetting patients for appropriateness, you have urine drug screens, opioid contracts, one-week initial prescriptions, then 30-day maximum prescriptions, no refills allowed for most opioids, frequent clinic visits, reviewing the pharmacy database prior to every prescription, and other work beyond a standard medication. Physicians and staff spend time on the phone with pharmacies regarding finite changes to prescriptions now. If a patient is due their Day 30 methadone refill on a Saturday but is going out-of-town for the weekend, the pharmacy may not fill the prescription a day early without a new prescription written by the physician. What if a patient from Minnesota is traveling to Arizona for two months in the winter? Where will they get the refill? Will the pharmacy in Minnesota allow a two months’ supply? Probably not. Will the pharmacy in Arizona fill an opioid prescription from a Minnesota doctor? It is no doubt a laborious process.

5. Some doctors have blanket policies against opioids out of sheer convenience. Based on #1–4 above you may see why, but I contend it is cop-out to say, “we don’t prescribe opioids at this clinic.” Really? Are there no appropriate medical indications for opioids any more that you can just choose to leave them off the treatment list entirely? Why are opioids even on the market then if you are not going to use them in any of your patients under any circumstance?

Let’s say you are invited to your aunt’s house for Halloween dinner and she is serving up that dry meatloaf again. Wouldn’t it be easier just to be vegetarian? “Auntie, I’m sure it is succulent and savory, but I don’t eat meat. I am a vegetarian.” In a way, doctors have adopted the refusal to prescribe opioids like it’s a lifestyle choice, personal creed, or religious precept. “My physician-religion does not permit me to treat patients with opioids. You should go to those other people at that clinic who find this behavior acceptable.” Yes, many doctors may feel uncomfortable with the bullet points above or have insufficient knowledge of these medications. Unfortunately, it has become acceptable in medical culture to ignore the clear denial of a legitimate treatment option to patients out of convenience.

OK, I’m going to call out my own apparent hypocrisy to drug-prescribing before those of you who know me do. Yes, I generally have not prescribed hypnotics (sleeping pills like Ambien, Lunesta) for chronic insomnia. Cognitive and behavioral therapy for insomnia (CBT-I) is by far the gold standard of treatment. Most sleep physicians do not have the time to administer CBT-I, and it is hard to find therapists who offer this. Thus, many revert to sleeping pills even though they are not likely to be effective for long-term treatment. Historically, I have always tried non-medication, behavioral interventions first and then referred to a CBT-I provider if the patient is not responding. I have not, however, been fundamentally opposed to hypnotics if CBT-I had been ineffective. I fortunately can now do full CBT-I myself given autonomy over my clinic schedule within the direct care membership model, so this rarely comes up.

Yes, I am very tribal when it comes to being in the anti-dopamine agonist camp for RLS as well. Why? For long-term use, prescribing DAs, even to avoid using opioids, dooms a patient to what may be inevitable augmentation and chemical dependence, the result of which may lead to struggling with severe symptoms or impulse control problems for many years before having to use opioids anyway as the only option to get off DAs. This is not to mention going through an uncomfortable DA withdrawal process for weeks or months. Unless there is a big breakthrough in RLS treatment in the next five years, DA-prescribing today generally commits a patient to opioids in five years once augmentation occurs. DAs are not a viable long-term solution based on this logic, so I will accept being all or nothing regarding their use except in rare circumstances. 

Opioids, however, particularly in an RLS patient population, have been demonstrated to be safe and highly effective for the vast majority despite the weighty risks of overdose, abuse, addiction, etc. Those of you with RLS who have been treated with opioids now or in the past may have discovered the juxtaposition of two odd experiences: 

* Opioids significantly improved your RLS and quality of life, and you cannot imagine where you would be without them.

* You struggled for years without a provider mentioning this treatment, you requested this treatment and were brushed off, or you were even taken off the treatment when your doctor changed despite it being effective, all for unclear reasons. 

I ask then, if “we” as a medical field adopt a universal creed that “we don’t prescribe opioids,” would you be better off?

-Andy Berkowski, MD of ReLACS Health, who has not strained his low back lifting a heavy sack of Halloween candy, as it is depleted and otherwise of reduced mass by January

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Kakally
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26 Replies
Lolly53 profile image
Lolly53

Thank you so much for this information. It explains very well why we as patients are given so much flack when trying to pursue getting relief for our RLS.

Madlegs1 profile image
Madlegs1 in reply toLolly53

Excellent. Thanks so much for putting it up.

The elephant in the room, to which I have never seen discussed, is just how many opioid deaths are due to

1- accidental overdose

2-purposeful overdose

Until that distinction is made, there isn't much point to the main discussion.

Living in a country where suicide is legal, but the means to a peaceful end is not facilitated, then access to opioids is extremely important. Buprenorphin would not be helpful in that regard.

Thanks again for printing.

Kakally profile image
Kakally in reply toMadlegs1

I have a feeling that one of the main problems us the use of fentanyl and bogus other opioids which get ‘spiked’ or mixed with dangerous fentanyl. They are such strong respiratory depressants that the poor drug users just die from buying dangerously dodgy products. It is a massive problem in Canada and the USA and probably coming here in the U.K. to a bad level too. There are many people , and not just ambulance staff walking around with naloxone , a respiratory stimulant to give to anyone collapsed on the ground to reverse the symptoms.😔😔😔

Kakally profile image
Kakally in reply toMadlegs1

So most of this stuff is nothing to do with us poor folks caught up in the mess , when all we are trying to do is get reasonable treatment for our poorly managed RLS

ziggypiggy profile image
ziggypiggy

The travel situation is a real bummer. 30 days are less. Straight from pharmacy to the airport. Time is ticking. lolGranted most people with bad enough long-term RLS know that being at or near home is the best staycation. Socks and pants off please.

Eryl profile image
Eryl

The fact is that opoids do not address the cause of chronic pain or symptoms but just supress them. They may be useful for treatment following acute trauma or disease where nothing can be done about the cause of the pain/sensations but not chronic conditions which are more safely treated by removing the cause which I believe in the case of RLS and many other chronic conditions is systemic inflammation caused by foods in our diets.

Purpleyam profile image
Purpleyam in reply toEryl

Interesting comment regarding systemic inflammation. It is likely that a majority of our modern societies are afflicted with this inflammation, being an underlying cause of many chronic illnesses. With the evolution of our diet and ease of processed food consumption vs clean natural diet, we all have it. However I am in disagreement that 'cleaning up your act' and eating very strictly anti-inflammatory will rid you of rls. I recently had hip replacement, 5 months ago. That and its meds caused a flare up in my CRP marker to skyrocket. My liver enzymes were terrible of course too, I showed mild fatty liver. I was always a healthy active person so this was a wakeup for me. I diligently proceeded to eat very strictly low inflammatory foods, low carbohydrate, no alcohol, no sugar etc. As a result my blood panel was incredibly improved - my GP was impressed. Low inflammatory marker, no fatty liver, excellent numbers! My joints feel good😁.Bottom line.. I STILL have my RLS and my afternoon augmentation. I am currently starting to wean off Pramipexole and taking Pregabalin. Mind you, I am a much healthier person!

Eryl profile image
Eryl in reply toPurpleyam

Good work but if you stil have rls you may be missing a cause like stress or that the meds are causig etabolic dysfunction. Perhaps if you'd cleaned up your diet earlier you may not have needed a new hip. Having cleaned up my diet rigorously and added some anti oxidant foods and supplements I am free of RLS execept when I let my diet or lifestyle slip, and that's without any medication.

Purpleyam profile image
Purpleyam in reply toEryl

You have success with clean eating and good knowledge of nutrients/supplements. Good job!. I also have been eating healthy for years; no gluten, healthy carbs, loads of vegetables. My hip wear and tear was due to years of athletic activities and a bit of genetics. It was the stress of major surgery and influx of pain meds, anti inflammatory drugs, tylenol etc that suddenly caused those factors for me. Thus I took a regimented approach to my recovery.

Eryl profile image
Eryl in reply toPurpleyam

I have just come accross this video explaining the possible causes of inflammation.youtu.be/3KiXKyfHvtM?si=_82...

nocturne profile image
nocturne in reply toPurpleyam

Congrats to both Purplyam and Eryl. I, too am on an anti-inflammatory diet, mostly wild-caught fish, veggies, (very few) whole grains; no refined carbs, sugar, or alcohol. My liver enzymes have always been great, and still are. But unlike you both, My RLS has not gone away, and I still rely on a nightly codeine-Tylenol pill for relief. I have a ton of auto-immmune disorders, so those may be playing a part. Diet is not a miracle-cure for all of us.

Purpleyam profile image
Purpleyam in reply tonocturne

Hi Nocturne, I agree with you completely, as I still have RLS and augmentation to deal with. I'm sorry to hear that you have auto immune disorders to live with. I can see why you work hard at maintaining a low inflammatory diet. I do because we have arthritis in our family. If you are able to manage your rls and sleep fairly consistently then kudos!

nocturne profile image
nocturne in reply toPurpleyam

Hi Purpleyam

Thanks so much for your kind reply. and I'm sorry that you still have RLS *and* augmentation to deal with! I know the latter will eventually subside, but hang in there, in the meantime. I'm grateful that my primary is willing to prescribe codeine for my RLS, although gone are the days of 90 pill- refills. Lol.

I'm grateful for this community and the information and support shared by so many, including you.

Ticki profile image
Ticki

Thank you.💜

Kittykipu profile image
Kittykipu

Well my legs are really bad today but my right it worce than my left , they won’t stop moving about the pain in my right leg is so bad I’m in tears with it , I also get cold when my legs are like this , so I went and bought chocolate CBD leaves which have 10mg in each leave so I took 1 nothing then another , then a hour latter took another which was 3 in total it did help me ,I got a sleep for 3half hours woke up with my legs feeling a bit better , it’s not 3 hours latter and both my legs are better not and I’m not cold so these chocolate CBD leaves have helped me a good bit today ,as when my legs are like this it usually lasts for up to 16hours before settling down altogether, so I’m happy I took them , I wish doctors could give us a prescription for CBD when it clearly helps ,

Kakally profile image
Kakally in reply toKittykipu

Dear Kittykipu,

I’m so sorry you are having one of those horrendous RLS marathon episodes when you just know it is with you for hours and hours without a let-up ,

I am glad that the cbd chocolate leaves have helped you. I’m not sure where you live or what the law is where you are… I do hope you can get hold of the cbd whenever you need it , plus hopefully a more suitable long term treatment . 🤗😔🤗

Kittykipu profile image
Kittykipu in reply toKakally

Unfortunately I live in Scotland so the low here means you can not have cbd , which mean I have to watch what I’m doing and buying from , it would help a lot better if he went with it to allow CBD to help all of us out there that suffer a great deal in pain , thanks for the reply,

Kakally profile image
Kakally in reply toKittykipu

How ridiculous and awful for you to have to behave as if you feel like a criminal when the medical profession is letting you , and all of us, down so badly 🤗😔

Kittykipu profile image
Kittykipu in reply toKakally

Yes I know ,you would think theses days they would be able to give people like our self and others that really suffer CBD as it does help us , I have a friend that has ms and a few other health problems she pay some site and get canibis delivered to her door ,she said it’s expensive but again it helps her when she needs it , I think it’s about time the medical professionals should do something to get this on prescription,

nocturne profile image
nocturne

Thank you SO much for posting this!

Jetto profile image
Jetto

Doctors that don’t want to give opioids are pricks.

From what I understand max dose is only 4 little 5mg pills a day, of which I am on.

I have never felt high or euphoric on this low dose, I still get the nastily side effects.

Anyone wanting to be on these nastily wicked methadone pills has mental illness.

I could not sleep for ten days straight from RLS pain and the other stuff does not work. I take 600mg of Gabapentin and 20mg.

Kakally profile image
Kakally in reply toJetto

I agree totally.

Plus could you please tell me what side effects you get from the methadone ?

Jetto profile image
Jetto in reply toKakally

Harder to sleep

Jetto profile image
Jetto

I have terrible constipation. Worse sleep apnea. RLS is worse when you forget to take meds or forget to refill meds. But methadone worked and others did not. The agony was unbearable.

The harder and longer you exercise the more the RLS symptoms go away for me.

Kakally profile image
Kakally

thank you.for all of that. I’m so glad that at least you have something that helps take it away

.?I am an ultra walker , i.e. events longer than marathons because of my RLS!

jack101 profile image
jack101

you are a hero. Thank you.

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