After more than 20 years of 2 x 50 mg tramadol AM and 2 x 50 mg tramadol PM (daily dose of 200 mg), I began titrating my tramadol dose several months ago. With the exception of pregabalin 1 x 50 mg that I began re-taking a little over a week ago, the only RLS-specific medication that I now take is tramadol. For the sake of discussion, I assume that the benefits of pregabalin have not yet had sufficient time to do affect my RLS one way or another.
Every two weeks, give or take, I have been reducing my tramadol dose by about 25 mg. The reduction was iterative, sometimes going back and forth rather than in a constant declining straight-line progression. E.g., my reduction from an aggregate daily dose of 100 mg to 75 mg might include an occasional relapse from 75 mg back to 100 mg.
In the absence of any meaningful (sensible?) guidance from my former "sleep expert" neurologist, I experimented with the tramadol schedule: since it took about an hour to take effect and since its beneficial effects lasted only about six hours, the 100 mg daily dose might be taken in four doses of 25 mg each rather than in two doses of 50 mg. All appeared to be going well. But not quite.
My RLS is primary. Before I began taking RLS medications, it followed the typical daily cycle: worsening during the evening hours, with the peak discomfort sometimes lasting thru early morning. Oddly, however, in the years since I began taking prescription medications for RLS, the timing and duration of my RLS discomfort enlarged: it was now ever-present, day and night, seven days per week. The only day-to-day differences were in the severity and duration of the symptoms.
I did not attribute the worsening of the RLS to tramadol or to any other RLS medications, but instead defaulted to the saw that "RLS gets worse as you grow older." Perhaps I should have been more circumspect in my conclusion.
Over these past few weeks and months--and despite the discontinuance of pramipexole and the substantially reduced tramadol dose--my daytime RLS discomfort now is about the same as it had been while I was taking the greater tramadol dose (and pramipexole, supplemented with hydorcodone as needed for pain). Yet no matter what the time and dose of tramadol that I take, the tramadol offers virtually no substantial relief between about 1:00 AM - 3:00 AM, the early morning hours customarily linked to the Circadian Rhythm and Primary RLS.
The experience of these past weeks and months has caused me to revisit the nature of my RLS: whether or not all of the now day-long RLS discomfort that promptly and invariably is relieved by the ever-declining tramadol dose is primary or whether or not much of that discomfort is idiopathic and induced by the discontinuance of tramadol. Since my Primary early-morning RLS appears virtually untouched by tramadol, I infer that the reason that tramadol offers relief to my daytime symptoms is because idiopathic RLS is part and parecel of the withdrawal symptoms encountered by anyone who abruptly discontinues the intake of an opiod.
In summary: I suspect that my RLS now is hybrid: idiopathic in the daytime and early evening; and Primary in the late evening and early morning. What a mess!
Tramadol is the only opioid that also causes augmentation ( an increase in severity of RLS).
I presume that is why you are reducing it and replacing it with pregabalin?
Unfortunately, as you are withdrawing from an opioid, you are faced with the double whammy of worsening RLS after augmentation AND RLS as a symptom of opioid withdrawal. You can try slowing down the withdrawal and use a pill cutter so you reduce by a quarter of a 50mg tramadol every 2 weeks or you could consider replacing tramadol with another low dose opioid like codeine, oxycodone, methadone or buprenorphine. You would not then suffer the opioid withdrawal RLS and the replacement opioid would probably cover the "augmentation" withdrawal as well.
If you would prefer to try pregabalin, bear in mind it takes 3 to 4 weeks to become fully effective for RLS and the average dose is between 150-200mg at night.
Allow at least two to three months after the last dose of tramadol before your RLS settles. Once you find the right medication for you, your RLS will return to the normal pattern of being more severe late evening and night time but it is possible to find a combination of meds to cover your symptoms completely.
I wasted 5 years struggling on pregabalin and oxycontin thinking it was normal to still have severe RLS after augmentation on ropinirole. The top RLS Professor in the UK confirmed that 4 or 5 hour's of broken sleep was the best I could expect. He was completely incorrect and Dr. Buchfuhrer in the USA told me to find another doctor. There are no other doctors but I followed the advice of a fellow forum member, Shumbah, and pushed for buprenorphine. I have had zero RLS since starting it in July 2021.
We all react differently to meds so it is a case of trial and error until you find the right combination for you.
Good morning, Joolsg, and thank you so much for your comprehensive and informative reply.
I tend to write somewhat lengthy comments as my habit is to assume that the reader knows little about my circumstance other than whatever information may be contained in the particular comment. Yet as long as my comments might be, invariably, they omit some pertinent information that I separately posted elsewhere. Such is the case here.
The reason that I am titrating tramadol is because I refused to sign a "voluntary" "Pain Management Plan." The Plan would require, among other things, that I submit to random blood and urine tests, receive the Rx only in paper format, be restricted to dispensation by only a single pharmacy, the Rx could not be replaced if lost, and among other things, I would be blacklisted nation-wide from any opiod should I fail to abide by the PMP.
About a dozen different prescriptions have been prescribed for me over the past decades to treat RLS. The medication that you mentioned, buprenorphine, was not among them. I just looked up that medication, and it is described as an "opiod agonist." If it is subject to a PMP, I won't be able to take it.
As I type, I have about 40 x 50 mg tramadol remaining. To get a 25 mg dose, I am cutting each tablet in half. The incredible part is that the lower dose appears to offer substantially the same daytime relief as the larger dose for which the Rx initially was written (2 x 50 mg AM; and 2 x 50 MG PM). I would end up making a mess of things by dividing each tablet into four parts of 12.5 mg each.
My fear is that I will have exhausted my tramadol reserve before my upcoming appointment with a new neurologist to whom my new general practice physician has referred me. Meanwhile, she did prescribe the 1 x 50 mg pregabalin; I will see her next week to discuss increasing that dose. She made clear that, pending my appointment with the neurologist, the only RLS medicine she would prescribe for me is pregabalin.
I sympathize with your situation. Like you I have been taking tramadol for over 20 years. It is the only prescription I take for RLS.
The last few years, I've been slowly reducing my dosage from 400mg/day. Today I can get by on 200-250mg. On this dose, the RLS kicks in late morning to midafternoon. I can suffer through it by keeping active and drinking coffee or kratom. Late afternoon I take my first dose of 100 mg, in the evening -half a pill, and another 100 mg before bed. This allows me to sleep all night, but I do have RLS symptoms much of the day.
I chose to sign the "voluntary" "Pain Management Plan." I felt that I had no choice if I wanted the tramadol, and I definitely need the tramadol to sleep and function normally. I must say that the PMP has not been that bad for me. My doctor was strict for a year or so, and then began loosening up once he saw that I wasn't a drug addict. Turns out, he didn't like all the extra work required by the PMP.
At first, I had to take random urine tests, and get my prescriptions by paper, and was limited on a pharmacy, and had to have appts every 2 months, but now I am back to the way things were before the PMP. I only see my doctor every 6 months. He refills my tramadol every month automatically.
Of course, all of that could change at any time, but I was thinking you might try the PMP and see how it goes or look for another doctor who is more helpful.
Good evening, Jerry57, and thank you so much for sharing your own experience.
I went years having been threatened with a requirement of a PMP. But there always was some reason or other why it never was implemented. "Our printer is not working" seems to have been the standard excuse. At one point, I said that I would sign, naively believing that it was simply a general agreement that I understood what the medicine was, its potential side effects, the amount prescribed and, etc. Only after I actually researched its terms, did I rebel.
I often cut off my nose to spite my face. Such is the case here." Though I don't begrudge those who proceed otherwise, I will not sign a PMP notwithstanding the horrific consequences. My intent is not to pass moral judgment nor to be a martyr. For me, it is a personal choice and a matter of principle.
I was going to comment further on this evening's experiment in the further reduction of tramadol per my initial comment, above. But my further comment probably would fit better as an additional reply to Joolsg. You also may find it of interest.
I think it’s important to revisit this post whereby you were able to basically halve your tramadol dose. I believe this is due in no small part to the 3 iron tabs you take before bed. I see I suggested once before to you to take the iron in the evening before that second dose of tramadol. You might find you don’t even need that second dose. Also I noticed your RLS got severe at a young age. I know your RLS is very familial but did you start an SSRI 30 years ago when they first came out in a big way? SSRIs will dramatically worsen the symptoms of RLS. But doctors don’t know this and certainly not 30 years ago. So then they prescribe a DA at some point and if taken long enough will truly give you severe RLS. The SSRIs only make the symptoms worse, they do not shrink our receptors. Tramadol supposedly will also down-regulate the receptors. Anyways, I’m curious if that’s how your severe RLS might have begun in your 30s.
Thank you for your concern. I agree that iron has helped me reduce my tramadol intake, but unfortunately it is not a cure for my RLS, yet. Perhaps an infusion would help, but no insurance.
After your suggestion, for several months I experimented with the iron taking it at different times and different amounts with and without food, while lowering my tramadol. I got down to 150mg tramadol, but no amount of iron could prevent my RLS from waking me and keeping me up all night in agony. In desperation, I actually went 2 days with zero tramadol and lots of iron, but the withdrawal was too much for me (and my wife) to handle - relentless whole-body RLS and no sleep.
As for SSRIs, I was not prescribed them for my RLS.
For now, I continue taking my 200mg of tramadol/day and I am still experimenting with the iron. I haven't given up hope.
I, for one, think it’s great how much you’ve reduced the tranadol. If you need the tramadol you need it. This condition is a b-tch. You’ve done a great job dealing with it. I just brought this up because at the moment there was discussion swirling around tramadol. The iron alone won’t be enough for everyone, but can have an integral role as it does with you. Keep up the good work!
Jerry, have you ever thought about taking magnesium? The below member was able to cut out Gabapentin and rely solely on magnesium. If you do start taking it then after a few months you can try going down to 150mg again. Only don’t suffer! If you wake up with RLS then go take the other 50mg.
Don’t rely on my recommendation alone. Think about it Research it. If you go for it start slow - 25mg and then maybe work your way up.
Scroll all the way down and read all of GreekStudent’s comments:
Salem, Thank you for your reply. Yes, I have tried magnesium in various forms over the decades, especially since so many on this site and even my own family members have benefited from it. I wanted it to work. Just like all the other recommendations on this wonderful website, I have tried all or almost all of them. Unfortunately, Mg is one of the supplements that actually exacerbates my RLS symptoms.
It puzzles me that my own brother and I can have opposite reactions to foods and supplements. For me, coffee (caffeine) relieves my daytime symptoms within the hour. To my brother, caffeine is poison, his RLS goes off the charts. He takes vitamin D, and I can't tolerate it. My brother gets relief from Mg, and I don't. I'm guessing, but I think the difference may stem from the medication we take. Years ago, his Dr prescribed him buprenorphine, and I was given tramadol.
I suspect that my brain has been rewired after 25 years of tramadol. Recently I took a klonopin pill thinking it would be great, but instead, it made my RLS worse. Some 25+ years ago, my Dr prescribed a small trial supply of Klonopin (clonazepam) just to see if it would help my RLS. This was way back in the old days, when I was an RLS rookie, before tramadol. Klonopin was like a dream, a wonder drug for me, it took away all my RLS, and all my other pain and worries. I loved it, but sadly, my Dr. said it was addictive, and settled on tramadol. While tramadol also worked, it didn't give me any good feelings like the klonopin, in fact I felt no side effects from the tramadol, just no RLS. Why did klonopin work so well 25+ yrs ago, and now it does the opposite? Seems like it must be the tramadol effect. God Bless!
I agree, the different RLS meds that you and your brother are taking may have something to do with it. With magnesium, timing may also be a factor. I’ve read scientific articles that magnesium “inhibits” the release of dopamine. That’s bad for RLS symptoms in the hours after ingestion but probably good in the long run and I’m guessing that’s why magnesium helps people - by blocking dopamine receptors they grow bigger and stronger. I believe it’s possible that magnesium taken during the day might even lessen RLS ever so slightly that very night. Sometimes all we need to do is move the marker a little bit to improve (or worsen) our RLS. We’re literally dancing on the head of a pin. 🫣
Hi, again, Joolsg. I was going to include the following in my reply to Jerry57, below, but I think that it may more appropriately fit here (and I wanted to increase the chance that you might note same).
I revisited your suggestion about further dividing the 50 mg tablet to extend the duration of my decreasing reserve of tramadol. In the absence of the ability to neatly divide each tablet into four equal parts, I figured that I would "put my money where my mouth was." If , as appeared to be the case, tramadol only was effective against the tramadol-discontinuance-induced idiopathic RLS, why not skip the 3rd dose altogether? This evening, I did so.
I took my 2nd tramadol (1 x 25 mg) about 4:00 PM local time. Following early evening discomfort, I took a hot bath to gain some hours-long respite from the RLS discomfort. It is now about 11:00 PM local time. Ordinarily, I would by now have taken my 3rd tramadol (1 x 25 mg) an hour ago. I have not done so. My discomfort as I type is no better nor worse than it would have been had I taken the 3rd tramadol; rather, it appears exactly the same.
If things proceed per custom, the primary RLS discomfort will increase over the next few hours, reaching its peak ~1:00 AM and continuing at that level until ~3:00 AM, at which time I will fall asleep, only to be awakened hours later with equal or greater discomfort. At that awakening, I usually take my 1st tramadol (1 x 25 mg) and fall to sleep for two or three hours.
[I recognize that it might appear incongruous that, in my case, tramadol only relieves the "daytime" idiopathic RLS; to the extent that the discontinuance has induced idiopathic RLS during the late evening and early morning hours, such appears to "non-additive" to the Primary RLS that I experience in the late evening and earlly morning.]
If the foregoing strategy holds, the duration of my reserve will have been extended considerably. The only potential fly-in-the-ointment (oatmeal?) is that I appear to have caught whatever cold or flu-like illness may be going around. I messaged my doctor but haven't received a reply. Be well.
Hi, again, Joolsg. Hope that I am not making a pest of myself by posting so many comments and replies. Anyway ...
As an update to my last reply regarding further titration of tramadol: Per below, during the 24 hours expiring this past Midnight, I took a combined total of just 50 mg tramadol, in two divided doses of 1 x 25 mg each. The last dose was ~4:00 PM yesterday. I also took 1 x 50 mg pregabalin ~10:00 PM. Results:
Though there was a minor uptick in the level of discomfort that I endured from late evening yesterday through early morning today, for practical purposes, it wasn't much worse. To be sure, on several occasions I thought of cheating and taking that third 1 x 25 mg . Only the fear of embarrassment at my failure prevented me from doing so.
I was awakened periodically throughout the night--more so than previous--but not due to RLS discomfort. Rather--and at the risk of being indelicate--to relieve myself. Later research suggested that tramadol enhances "retention of urination." I inferred that the absence of that 3rd tramadol had ignited my newly-enhanced friendship with the toilet.
I took my first 1 x 25 mg tramadol about 6:00 AM today. It is now 4:00 PM local time, two hours after I customarily took my mid-day second dose of 1 x 25 mg tramadol. I am no worse for the delay and hope to take my 2nd dose some time this evening.
That's encouraging. Your withdrawal symptoms are manageable and the pregabalin will hopefully cover your RLS.I'm sorry to hear that you have caught one of the many respiratory viruses in circulation. Cases are rising everywhere. Use saline nasal spray and chlorhexadrine mouth wash as they help to reduce the viral load.
I hope you recover soon and that the tramadol withdrawal continues without any increased RLS.
Thank you, again, Joolsg. Fortunately, I appear to have lucked into a great physician. Not only is she coordinating my RLS treatment, but she is assisting with my health issues generally. Her office promptly and patiently returned my message to discuss my flu/cold/respiratory (hopefully not Covid) issue. Spent much time with me on phone. See her next on Tuesday and am confident that she will further assist. Be well.
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