I have noticed this three times in the last few weeks, after being on suboxone (sub-lingual strips) for last 2 months. Within 5 minutes of taking the suboxone, my RLS will kick in (generally at a medium-ish intensity). I've not rode it out to see how long it lasts - I've taken some cannabis to lessen the RLS, and when that doesn't work completely, taken some more suboxone (I take 1/6 of a 2mg strip - .33mg, so doubled to .66mg) . Last night even the second dose of suboxone seemed to trigger more RLS for about 30 minutes until I fell asleep. The rest of the night was fine. I can't correlate these episodes with any diet, exercise or other factors that explain worsened RLS on those days. I always take the suboxone at same time - 8pm.
Anyone had any similar experience? I'm seeing my doctor today to see about getting a buccal version of buprenorphine in the hopes of reducing the constipation side effect. I might also ask to try a patch version just to experiment. I'll post results...
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707twitcher
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I find that about 1/2 hour after taking the Buprenorphine I will get muscle twitches( kind of like when you have a muscle twitch when you are just about to fall asleep), but it does not feel like RLS, meaning the unavoidable need to move the legs. The twitches affect the extremities and diaphragm and lasts about 30-60 mi utes and resolves.
I feel the same way most evenings. I take the same amount of Suboxone as you (1/6 th of a film or .33 mg) about two or three hours before bed. If I go directly to the couch, I get medium level RLS for about 30 - 60 minutes until it kicks in. Stretching on the floor helped.
I have learned that staying standing or taking a walk after taking the Suboxone for approximately an hour alleviates the RLS. Then, I can watch TV until bed with no RLS and sleep with no RLS.
You are not alone. The early RLS certainly seems to correlate with the timing of taking Suboxone as I couldn't relate it to any foods, etc.
That may be because it contains lactose monohydrate (a type of sugar) and maize starch (starch is a long chain of sugar molecules) both of which can cause inflammation which is the primary cause of rls.
Surely if this were the case the increase in RLS would be uniform, not sporadic. In other words, neuroinflammation when it exists is an ongoing condition and not suddenly turned on when a particular substance is ingested.
Inflammation is intensified by the ingestion of refined carbohydrate and subsides in the interim periods, that's why RLS is worts for most people in the evenings and least in the mornings after a night of fasting.
Here I must disagree with you. People can completely avoid refined carbs and still have RLS. Circadian rhythm is a far more powerful factor for RLS timing.
It’s true that for many (including myself), it helps to minimize refined sugar and refined carbs; but for most it only helps a little. I've never encountered credible claims of cure nor even radical reduction of symptoms, though I suppose it might be possible in rare cases.
I do understand & sympathize with the desire to identify some natural means of reducing RLS, something that doesn't rely on drugs with nasty side effects, and that is more a way of restoring optimum health. I have looked into many, many non-drug options over the years, including the inflammation theory that floats around the web; I tried taking natural anti-inflammatories & doing whatever else was suggested; and not only did it not help but eventually I realized that the inflammation theory as it is typically found on the web amounts to folklore, desperate yearning, and even in some cases what seems deliberate misrepresentation for financial gain (e.g. persons or companies selling supplements etc.).
To be blunt, such claims about inflammation being a major cause of RLS are at present wildly exaggerated beyond what little scientific research has actually been done. For a recent and sobering review of actual research, see the following paper:
“Inflammatory factors and restless legs syndrome: A systematic review and meta-analysis”, sciencedirect.com/science/a...
Again I do sympathize with wanting to find a natural way to combat RLS. And I will probably keep trying little things that might help and that seem more natural than the drugs I presently am required to take. But alas, at present combatting inflammation is not the royal road to reducing RLS - wish it were, and that it were that simple.
That's because refined carbs are not the only cause of inflammation , to reduce inflammation you need to remove all causes otherwise you won't eliminate inflammation or rls. Other causes include refined seed oils, artificial preservatives, toxins and natural pesticides in some plants.
No it's not, I've eliminated my RLS by avoiding inflamatory foods and replacing them with foods with anti oxidant propeties and vitamins with anti inflammatory properties
I don't want to argue with you - but I would like to point out where you are going beyond being helpful, into being unhelpful. Which I'm absolutely sure is not what you want.
What I mean by "impossible" is this: I get the impression that you believe so strongly in your theory about inflammation & RLS that you are ready to tell people to keep removing items from their diet until they find the magic trigger that gets rid of RLS for them, just as it did for you when you eliminated sugar, E202, etc.
But what if not all RLS is due to inflammation? What if there are other primary causes for some of us? If so, you are setting up an impossible standard for people to follow. They could do a complete elimination diet over a very long period of time . . . and still not succeed in eliminating or even noticably reducing their RLS.
I would be a good example of someone who doesn't fit your theory. To wit:
I have other health issues that led me a number of years ago to change my diet to a strict paleo diet. Early on I cut out all wheat. I then cut out all milk products; also all foods with lectins (which is what you are referring to as "natural pesticides in some plants"); all seed oils; all grains; all foods with artificial preservatives; all foods with added sulfites; all soy; and other foods besides. Also for awhile all caffeine, which was tough! Plus I made sure to eat fish, fruit, vegetables, and I took various supplements supposed to help with leaky gut, inflammation, etc.
In short, I did everything you advocate, and more. Nothing changed with my RLS.
My bloodwork did improve in some areas because of cutting out simple carbs. But things I hoped would improve, like fatigue & chronic pain, did not.
Eventually I relaxed some of my diet, but not all. For example I now allow myself to eat foods with lectins, because properly cooked, these are quite healthy, e.g. beans. I allow myself to eat tofu, but not processed soy. And so on.
I do still avoid sugar, processed carbs, artificial additives, almost all forms of extra yeast (it tends to act like MSG), and chocolate. These for me make RLS worse. But eliminating them hasn't gotten rid of RLS.
Back to the problems with inflammation being "the one theory": Inflammation does not account for how or when people acquire RLS; nor does it account for why physiological measurements can differ so widely between patients. Again, to use me as an example, I acquired RLS after taking Prozac (SSRIs and other antidepressants are known to cause RLS, but only for some vulnerable people.) Some persons have low serum ferritin and can be helped by iron injection - but my serum ferritin is naturally quite high & so iron injections won't help me. Also, for some persons RLS is likely in part hereditary; and this too is something your theory doesn't account for.
Also, if inflammation truly were the leading cause of RLS, then you would think everyone with inflammation would have RLS - and they don't. Your theory doesn't seem to account for why not. You would have to admit that there must be non-dietary contributors to RLS; but if there are non-dietary contributors, then the theory starts to fall apart, because the non-dietary contributors might be more important for many people than diet or inflammation.
Finally, please be careful about making statements such as RLS being worse for most people in the evenings because they are ingesting refined carbs. Here you are ignoring the science of circadian rhythm & its established relation not only to RLS, but to many other physiological processes. Plus, you are also making a statement for which you have no evidence. This is not simply helpful to the rest of us.
And neither is it helpful for you. Because as I say above, I am sure what you really want to do is help people. You've had success with your diet efforts, and you want to share the good news.
Why not just stick to that? Why not just stick to telling people your actual experience? That's plenty valuable right there.
You've frequently posted to the effect of "I was really helped by cleaning up my diet, here's what I did", etc. This is a great way to help & I'm sure many folks have benefited from that advice. I think you can safely add that you think it might be related to inflammation, because you've read or watched videos about inflammation and it sounds plausible to you.
Just keep in mind that some people aren't going to get your degree of success just by changing their diet. They aren't you. And RLS is still mysterious, with many likely contributing factors. Inflammation may well be involved . . . but so may many other things.
Many fruits contain large amounts of sugar so although you were eliminating many other things eating fruit was still contributing to rls. Another thing that can contribut is cortisol (the stress hormone) . I take the herbal remedy ashwaganda to regate it.
707twitcher - you said this: “Within 5 minutes of taking the suboxone, my RLS will kick in (generally at a medium-ish intensity).”
I gather from your phrasing that this occurs on some nights, but not others? That makes it trickier of course. But a few thoughts:
First, even with sublingual drugs, 5 minutes is too soon for the drug to have any effective presence in your bloodstream. Do a web search on this topic and you’ll see what I mean. Here is a typical hit from such a search, from the website Drugs.com:
“Suboxone starts to work quickly—about 20 to 60 minutes after you take the first dose. The medication should reach peak effect around 100 minutes (1 hour and 40 minutes) after you take the first dose.”
“It usually takes 20-45 min for the medication to start to work. Wait 1-3 hours before your 2nd dose.”
I’m not suggesting that you aren’t having an experience of RLS seeming to start almost immediately after you put the strip under your tongue. I’m just suggesting that something else is likely at play.
One possibility that might seem outlandish would be a “nocebo effect” - this is similar but opposite to the well-known placebo effect. Below is a definition of this phenomenon from cancer.gov/publications/dic... :
“A situation in which a patient develops side effects or symptoms that can occur with a drug or other therapy just because the patient believes they may occur.”
If this is happening, then it would be a conditioned response that is entirely unconscious. It is a possible reaction because various studies have already demonstrated that RLS can get better due to a placebo effect or worse due to a nocebo effect - see for example the following:
One question would be why a nocebo effect might be occurring on some nights for you, but not others. A nocebo effect might develop if one time when you took this drug, RLS happened to show up simply due to circadian timing or some other innocuous reason; and there might also be some other event associated with the occurrence, something so minor or neutral you wouldn’t think it significant. Thereafter your unconscious mind might create an expectation of RLS showing up when you take the drug and the other minor event occurs in tandem, again so innocuous you don’t even notice it. The RLS then goes away once the drug actually does kick in - a much longer process than just 5 minutes!
Another possibility is simply that your RLS is kicking in earlier on some nights due to circadian timing & other factors that are internal to your body & therefore can’t easily be identified. I was surprised recently when my own RLS specialist told me that RLS can vary simply because . . . well, it just does.
I know it’s weird to think that RLS could possibly be affected by our unconscious expectations; at first when I read about this I refused to believe it. My own opinion now is that yes, these placebo and nocebo effects can occur; but if they do, probably they are relatively brief and/or mild; and that moderate to severe RLS is much more likely to be unrelated to these effects. And something like PLMD, which is often correlated with RLS, would also seem to be entirely unrelated.
But I do sympathize with what you’re going through. It is not imaginary RLS but real RLS, no matter what the process is behind it. You could try taking the drug earlier, or you could simply stick to your present routine; if indeed it is a nocebo response it may eventually go away on its own. I suppose a third possibility is some other trigger you haven’t yet been able to identify, although you seem pretty diligent in trying to track the usual triggers.
If you still think that somehow the buprenorphine is acting as a trigger for occasional RLS, do a web search for whether such a phenomenon has been reported or studied as a rare paradoxical reaction; I did a quick search on this and came up empty. This makes it even more unlikely given how thorough the research is & how many people are taking this drug for RLS. And also remember that figuring out causation is something the human mind is absolutely fixated upon & driven to attempt - so much so that our minds often mistake correlation for causation!
Thanks for the thoughtful reply and helpful links. I'm embarassed to say that after posting, I took a deeper look at my daily log and compared it to my Starbucks App ordering history. Turns out that on those nights of post-strip insertion RLS, I had ordered a cup of coffee (only half-caf) around 2 or 3 in the afternoon. Mystery solved! No more afternoon coffee for me. The timing of the RLS so soon after inserting the strips is perhaps still weird. But the other comments above confirm to me that there is some reaction that happens when my body recognizes the buprenorphine and I'm a bit vulnerable (caffeinated).
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Pedialyte—electrolytes & RLS
RLS - Suboxone - PLMD
DESPERATE FOR HELP
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