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I have been suffering with severe RLS as a result of getting off opioids recently after years of daily use. It is one of the most common symptoms of opioid withdrawal and in my case, it is by far the worst symptom. This is why I’m curious about your doctor prescribing methadone to treat RLS. Is her plan to keep you on this for the rest of your life? Will you have to continue upping your dosage as your tolerance builds? The relief must be amazing and I’m glad you feel better but this seems dangerous. If you already had bad RLS and will eventually have to stop taking methadone, isn’t that ultimately going to make matters much worse? It seems like you could be piling on RLS from opioid/methadone withdrawal to an already existing condition of RLS. Or alternatively, continuously increasing the opioids you put in your body over time which isn’t healthy and can lead to addiction. I hope you don’t take offense to my concerns and questions. I’m just in a very similar boat as you and curious what the doctor’s long term plan is here.
Replies to "I have been suffering with severe RLS as a result of getting off opioids recently after..."
@vanjinx Hi vanjinx--
I take buprenorphine in the form of Suboxone, which is similar to methadone. Suboxone, primarily, also treats drug addiction problems, but it is effective treating RLS as well---although in a much, much smaller dose than a former drug addict needs to take.
My doctor reviewed the differences in side effects (as well as potential problems) between methadone and buprenorphine (taken as Suboxone) and Suboxone is safer and has less troublesome side effects. Several of us (posters on this forum) take buprenorphine (see above) and are very happy with how well our RLS is managed.
Of course, I would rather take nothing, but if the choice is between RLS torturing me and taking Suboxone the rest of my life, I will continue to take the drug. Sleep deprivation is just too horrible.
In the last 2 and 1/2 years I did have my dosage increased once. This was after a surgery which somehow fed into my RLS. (I think something to do with tightness--exercising or over-stretching that causes tight leg muscles also worsens my RLS).
Evidently, some people's RLS responds best to opiates/opioids. I went through the litany of other medications--which took a couple years and nothing worked. I knew that pain-medicine opioids would work, but my doctor convinced me to try buprenorphine (as Suboxone) instead and he was right. Less side effects than taking Tylenol #3 etc. It's an opioid, but mild--and has no addictive properties.
I wonder why you stopped taking the opioids prescribed for you? Were you having a problem or was it your doctor who had a "problem" writing an opioid prescription?
BTW, my RLS presents as painful--an aching pain that increases and increases with intensity during each episode (if not treated). And, there were typically multiple episodes every night. Some nights it was all just one never-ending episode.
My doctor and I recently discussed this and he told me there is a theory that some RLS sufferers (whose RLS symptoms are painful) have a deficit of endorphins (instead of dopamine). Low dose opioids address this. Not much research on this theory (yet), but I know I never responded to gabapentin, pregabalin, IV iron infusion, etc etc.
The new RLS guidelines (see at the RLS Foundation website) say opioids are an appropriate medication for some people's RLS. There are GI issues--for me less significant than having RLS pain wake me repeatedly every night--and I think less constipating than with pain-medicine type opioids.
You really should look at the RLS Foundation website. A wealth of information there.
Methadone and Suboxone (the buprenorphine part of Suboxone) are not addictive. Yes, with any medication there are side-effects and it's better not to NEED them. But, if needed, taking (in my opinion) is the right course of action. Treating my RLS is as critical as a diabetic needing insulin. It's a forever treatment (because I don't want to live in a state of sleep deprivation ever again.)
This is my story and my perspective. I think you ask good questions. I hope you find the right course of action for you. Let us know how you are doing, please.
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@vanjinx
My doctor prescribed methadone because every other medication I tried did not stop my RLS symptoms. On a scale of 1 to 10 for RLS severity I am at an 11. My choice was binary: methadone or a quality of life so unbearable that suicide looked like the only option. I don't say this lightly. I am not a person prone to exaggeration or theatrics.
I take 10-15 mg of methadone daily. The dosage is stable, has been for a while, and I hope it does not increase. My doctor says I should not develop augmentation to it as I did with every dopamine agnostic I was on over the years.
As far as the future. There is a new class of chronic pain medications being developed. The band name is Journavx. It was released for limited use in 2025. Further studies are being performed before it is allowed for RLS chronic neuropathic symptoms. My doctor is monitoring this carefully. We will discuss my options once the medication becomes available. I hope this to be sometime in 2026.
I agree with your assessment pertaining to withdrawal from methadone. I did attempt to stop taking methadone late last year in preparation for eye surgery. It was a horrible experience, so much so that I went back on it after a few days and canceled my surgery.
I have no options at this time but continue with methadone. The future may be Journavx or some other new medication that comes on the market. I don't want to take methadone, and the thought of using it daily for the rest of my life is absolutely not something I want to do. Time will tell. I am extremely grateful for having a sleep specialist doctor who does the research, stays current on the state-of-art, and then guides me through the best possible solution to relieve my RLS.