Restless Legs Syndrome (RLS) Discussion Board

Hi,

I'm 73 and suffer from Severe Refractory RLS. I experienced my first symptoms in childhood, but RLS didn't become a significant issue until my late 50s. I also have Chronic Lymphocytic Leukemia, prostate cancer, scarred lungs and irritable bowel syndrome. Those diseases are under control and have limited effect on my life. They are a walk in the park compared to RLS. In about 2011, a neurologist prescribed Gabapentin. It worked, but required a number of dose increases. I can't remember what the dose was when I gave up on the drug, but It may have been 600mg. I was only on Gabapentin for a couple of years. My doctor then prescribed a benzodiazepine. I can't recall the name. The benzo worked for a while, but slowly lost effectiveness. My current doctor prescribed 0.5mg Pramipexole in about 2014, and I remained on that dose. By 2022, my RLS symptoms had become much worse. They now started in the evening, and also involved my arms. I later became aware that this was augmentation. I was up once or twice during the night waiting for the symptoms to pass before going back to bed. I haven't heard anyone else mention this, but for a considerable time I used sugar (cookies, marshmallows, candies) to ward off RLS symptoms. It was effective, but obviously an unacceptable practice. I'm still using it, but I'm trying to stop. My sleep had become so poor that in Sep 2023, I told my doctor I wanted something more effective, even if the drug was not considered to be totally safe. At the time, I was aware that some used opioids to treat RLS, but really had little knowledge of the subject. My doctor does not agree with using opioids to treat RLS, but he did prescribe me T3s (Tylenol 3s: 30 mg codeine plus acetaminophen and caffeine. I'll just refer to it as codeine). However, I continued with Pramipexole. The T3s had almost no effect, which really puzzled me. I recently read "The Appropriate Use of Opioids in the Treatment of RLS" published by the Mayo Clinic. I discovered that "pretreatment of RLS with a dopamine agonist will negate any benefits of opioids", and a 10 day washout period was required before substituting an opioid. On my own, I weaned myself off Pramipexole, finally going 10 days without the drug. It was a very unpleasant experience with little sleep. I started taking codeine Jan 25, 2025. The jury is still out. It has worked OK most of the time. Bed time for me is 2AM. I take 60mg at 1AM. I wake up 2 or 3 times during the night. Sleep durations have varied from 0.5 to 4.5 hours. I take a second 60mg dose 3.75+ hours after the first, depending on when I'm up. On one occasion I did not need the second dose. When I'm up, I usually need to stay up about an hour before I can get back to sleep.

I offered my doctor a copy of the Mayo paper, and he told me to keep it, as he didn't have time to read it. There is a certain level of anxiety present when I'm taking opioids, my doctor does not support it, lacks knowledge regarding the use of opioids for treatment of RLS, and has no interest in acquiring that knowledge. I'm really on my own. When I was treated for my cancers, the medical system took total charge. While I did some research, there was really no need for me to know anything about the disease or its treatment. That's not the case with RLS. Here I have to become knowledgeable and advocate for myself. If I don't, I believe my chances of receiving effective treatment would be slim. My doctor did refer me to the Movement Disorders Clinic in Winnipeg. It will probably be several months before I get an appointment.

I have some questions:

1. I get the impression most Severe Refractory RLS patients end up on opioids. Is that true? Is there any point in considering non-opioid solutions? From what I've read, non-opioids appear to be very temporary and ineffective medications after augmentation has become a serious issue for a DA .

2. Some RLS sufferers take 24 hour medications, and some of us take medications that require doses in the middle of the night. Sleeping through the night is highly desirable. Should we all be pursuing 24 hour meds?

3. The RLS algorithm considers drug combinations for severe RLS. Has there been much success with combinations, or are they just a stop gap measure before going to straight opioids?

4. I recall reading about switching between medications, perhaps very frequently. Say Pramipexole on night 1, Gabapentin on night 2 and something else on night 3. The reason I ask, is I have experienced a few times that the first night on an RLS med is the best, and it falls off from there.

5. My sister-in-law is a Psych Nurse, and thinks I will have great difficulty getting a Methadone prescription in this part of the world. Unfortunately, that seems to be the preferred opioid in the treatment of severe RLS. I'm currently taking T3s. Are there better choices? Would straight codeine be preferable to T3s, or does the acetaminophen in the T3 provide some benefit? I would not think the caffeine in the T3 is desirable. Should I be looking for an extended release drug?

Thank you,

First, the idea of taking T3 daily for RLS is not good. The acetaminophen is very hard on your liver when taken daily. Doctors used to think that Tylenol was very safe. It is, but not when taken chronically. So, the answer to your question 5 is yes, you would be better of with just straight codeine.

Question 1 - No, not all patients end up on opioids. Unfortunately, since doctors used to start off with dopamine meds and then drove their patients into augmentation, opioids are often all that is left that works. If doctors would start off with iron therapy and then add gabapentin or pregabalin AND if the individual's RLS is not too severe, they can avoid opioids for decades or maybe even forever. The use of iron intravenous treatments has been a game changer but they are still too difficult to get.

Question 2 - The 24 hr opioids are desirable from a patient perspective just because of the convenience and the fact that we don't have to take meds during the night. A doctor's perspective is that you wake up, take a med and go back to sleep in two or three minutes. They don't realize that with RLS, if the RLS wakes you up, you will be up pacing the floors for 20 minutes before the pill starts to take effect and that means at least 30 minutes of sleep. This destroys what sleep doctors call sleep architecture where you need to progress from one sleep stage to another before getting into deep, restorative sleep.

Question 3 - Combinations work but the combination required varies by individual and needs experimentation. I take something from all four groups of meds (opioid, iron, gabapentin and pramipexole) to control my very severe RLS. Others get by with just iron and gabapentin.

Question 4 - One of the other moderators develops a resistance to opioids and augments on pramipexole in a few days. Her combination involves switching every few days so that she doesn't develop opioid resistance and dopamine augmentation. She had to experiment and work with her doctor to find this method of treatment. It is not something that everyone needs, but some eventually get there.

It is important to understand that large numbers of refractory RLS patients do great on low dose opioids alone and that they have not increased dosage in years. The RLS Opioid Registry has been tracking about 600 of us for over 5 yrs and about the only individuals that required dose increases during that time also have either cancer and chronic pain and needed the extra for the other condition.

As for methadone, your sister-in-law may be correct. It is unfortunate that it has the reputation it has gotten as an addiction treatment drug. It has some good properties when it comes to RLS (not just the 24 hr one), but it also comes with a long list of potential side effects. In the US, a "new" 24 hr drug that is gaining popularity is Suboxone (Buprenorphine). It also has some issues, but the bureaucratic red tape involved is much less because it is on a lower schedule than methadone or even codeine (Sch 3 vs Sch 2). There is one other 24 med, but it has even more issues. That is Tramadol ER. Tramadol also works as an anti-depressant, which means it has all the unpleasant problems that come with ADs. Tramadol is also the only non-dopamine med with the potential of causing augmentation.

Finally, if your doctor doesn't have time for the Mayo Opioid paper, try showing him this short paper that was recently released by the American Academy of Sleep Medicine. Highlight or circle the parts that are important for you so that he can simply scan the parts you want him to see while you sit there. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

For your own benefit, take a look at the Mayo document that the link in my signature points to. It is a bit older than the AASM paper, but says much the same thing except for the negatives about dopamines (which anyone who has augmented applauds - no cheers!).

Thanks Steve for your prompt and thorough reply. I will ask my doctor to change my prescription to straight codeine. I've noticed a couple of other posters have stated they are also using codeine/acetaminophen or oxy/acetaminophen. Your answers illustrate how difficult it can be to arrive at medication(s) that work. Sounds like DAs were an unfortunate mistake, and many of us would have been better off without them.

I am greatly indebted to this board. I am essentially on my own until I get to the movement disorders clinic, and this board provides an incredible amount of expertise and RLS experience. Although I had researched over the years, I never came across this board. I had very little knowledge of the disease and its treatment. In fact, my previous reading gave the impression that RLS was somewhat of a mystery. This board has really educated me.

I'm currently taking codeine. However, I made a previous effort with codeine just a few days prior to my current run. I gave up on the drug because it didn't seem to be working that well. In fact, the drug was working fine. The problem was my ignorance and unrealistic expectations of the drug. I did not know how or when to take it or what to expect. I thought I would sleep through the night. It never occurred to me that treatment would include taking a dose in the middle of the night. From posts of others using codeine, I was able to get myself back on track with codeine, and also realize it will probably work for years to come. I'm OK being up in the middle of the night. I've been doing that for some time with Pramipexole. I definitely prefer being up a couple of times during the night to only sleeping for an hour or two. Now, I'm usually getting 8+ hours of sleep, and function well during the day.

Regards and thanks again,

Wow. So sorry to read this. I’m 76 and on methadone, which works like a charm for me, once at night. I’m also on Trazodone for sleep and a whole load of expensive medication for the constipation the methadone causes. I was on Rotigatine for years but it didn’t work well and look what happened. Yeah, I’m in California, but even so I had to find a great doctor and pharmacy. This all happened after I found RLSF, yay RLSF!

BTW a dietician recommended I move from delicious baked goods in the middle of the night, to dairy (yogurt/kefir etc.) and to Premier Protein brand old peoples’ food supplement shake things. Works good. If they have Costco where you are, they sell it.

This is probably of no use, but canada.ca says “As of May 19, 2018, the Government of Canada removed this unique regulatory constraint imposed on methadone. Exemptions are no longer required from Health Canada for practitioners to prescribe, administer, sell or provide methadone to their patients.”

Also I walk most days.

Walking is great! It helps keep you regular, too. As does kefir (which is also delicious!). If you want to get away from expensive meds that deal with constipation caused by opioids, there is another answer: eat waaaaay more vegetables than you think you need, and more fruit, legumes, nuts & seeds; and less heavily processed foods. I don't take anything extra, except maybe once a year and that's usually when I'm travelling and can't eat as many vegetables as I want.

You can look up what foods help you poop and choose to eat lots of them. It really is possible. My go-to is a salad, and I'll put almost anything in it: any kind of leaf (bok choy, spinach, carrot greens, parsley, cilantro, etc.), bell peppers, cucumbers, daikon and other radishes, fennel, blueberries, etc etc. If it's possible to eat it raw, I've put it in my salads.

I was up to 3,000 mg of Gabapentin a day before adding oxycodone 2 years ago. The oxy dose gradually increased to 30-35 mg daily as my RLS became more severe. It's working but with side effects. My neurologist thinks opioids are best for severe RLS. I sleep well with 6 hours a night and a good nap in the afternoon. I'm 77 and a cancer survivor... for now.

You are fortunate to have found a neurologist that is willing to prescribe opioids for RLS. Research is starting to indicate that opioids are the best form of treatment for refractory RLS. The definition of refractory RLS is that it is RLS that does not respond to the alpha-2-delta meds (gabapentin and pregabalin) or is post-augmentation RLS. Often, the alpha-2-delta meds don't work well after augmentation, so in some ways this is saying the same thing. Refractory is not necessarily an indication of severity, but once again, there is often a correlation because it usually takes a few years to go through treatment with a dopamine med, develop augmentation and then find a doctor who understands that opioids are usually needed after augmentation. Since RLS often becomes more severe with age, all of this means that those of us with severe or very severe RLS often need opioids for one reason or the other.

Steve: I may have mentioned this before but my Neurologist has a mild case of RLS. On my first appointment I told him my GP was uncomfortable about increasing my opioid dose. He told me opioids are the best drug for treating RLS like mine. After he spoke to my GP, my GP immediately upped my dosage of oxycodone saying he was ok doing so because of what my neurologist said. So it's my GP prescribing oxy.

Brynmr wrote: Fri Apr 25, 2025 5:46 pm Steve: I may have mentioned this before but my Neurologist has a mild case of RLS. On my first appointment I told him my GP was uncomfortable about increasing my opioid dose. He told me opioids are the best drug for treating RLS like mine. After he spoke to my GP, my GP immediately upped my dosage of oxycodone saying he was ok doing so because of what my neurologist said. So it's my GP prescribing oxy.

That's not uncommon, where one physician becomes ok with prescribing opioids based on a specialist's recommendation. It's certainly good news when it happens.

badnights wrote: Sat Apr 26, 2025 7:30 am

Brynmr wrote: Fri Apr 25, 2025 5:46 pm Steve: I may have mentioned this before but my Neurologist has a mild case of RLS. On my first appointment I told him my GP was uncomfortable about increasing my opioid dose. He told me opioids are the best drug for treating RLS like mine. After he spoke to my GP, my GP immediately upped my dosage of oxycodone saying he was ok doing so because of what my neurologist said. So it's my GP prescribing oxy.

That's not uncommon, where one physician becomes ok with prescribing opioids based on a specialist's recommendation. It's certainly good news when it happens.

It is SO refreshing when you hear this. Congrats.