Tramadol Prescription for Refractory RLS?

[RLS_]

Has anyone used this as a treatment for RLS? If so, what type of experience have you had? Good/Bad?

I have really bad refractory RLS, Periodic Limb Movement Disorder, Sleep Apnea & Narcolepsy. My Dr. has recently prescribed 50 mg of Tramadol to see if I can get the RLS/PLMD under control and I am really hesitant to go down the opioid path.

Sleep Apnea currently managed with Dr. fitted Dental Appliance

Narcolepsy 10 mg of Adderall twice daily

RLS/PLMD 900 mg of Gabapentin nightly. BUT before this, I've been on Mirapex (10 years) but went through augmentation. Tired Requip with no success. Tried Xyrem (made PLMs worse) and it terrified me. Neupro Patch (did not work).

Each night is misery trying to fall asleep and stay asleep. Wake up multiple times and then want to binge eat any type of sugar I can get my hands on. I so tired on being tired and not sure what direction to go next. I have had people say I should try Medicinal Marijuana. Drs. think opioids would work.

Any advice anyone has on their opioid experience would be greatly appreciated.

*One more note: After 10 years of use, I had to basically quit Mirapex cold turkey (due to augmentation) which was 1 week of absolute hell and then another 2 weeks after feeling like crap before I started to feel like myself. I am 44 and don't think I could do the same thing 10 years from now if say my body became tolerant of opioids and I have to "withdraw" from long term use.

[Joolsg]

I also suffered augmentation in Ropinirole (requip in USA) & went through withdrawal in 2016. I used Tramadol during withdrawal but it didn't help much. I then added gabapentin but that gave me terrible side effects.Dr. Buchfuhrer suggested I switch to pregabalin but did state that both Gabapentin and pregabalin don't seem to work as well for people who've been through Augmentation.

He was right. Neither gabapentin nor pregabalin helped at all. I take medical cannabis and it's really helped so you could also try that.

Tramadol is also less likely to help if you've been through augmentation as it's the only opioid that also causes augmentation.

Getting off DAs is harder than getting off opioids so don't let that put you off.

Opioids at low dose are highly effective and in the USA RLS specialists prescribe Methadone and Buprenorphine- and they seem the most effective with the least side effects.

Here in the UK we're trying to push for Methadone and Buprenorphine to be made available but the medicalprofession are very reluctant to consider it.

Have a look at Dr. Winkelman's Opioid study which has been funded by rls.org.

massgeneral.org/rls-registry

[macewan13]

I’ve been on Tramadol - 100 mg, slow release - for a few years now, as well as half a 2mg patch. It’s working pretty well. I have the occasional bad night but it’s the best. ‘recipe’ I have found so far.

[Hidden]

As Jools says,tramadol is not the best opioid. It is a relatively weak opioid and hence larger doses with the consequences of that,

Oxycodone is licensed for refractory RLS here in the UK, so is another option to methadone and buprenoprhine.

I can appreciate your reluctance to start on medications which may be hard to withdraw from and you wouldn't want to repeat the experience you had with withdrawing from pramipexole.

There is no need to repeat that experience which was due to you stopping cold turkey. Luckily you survived! Such medications should never be stopped suddenly and the slower the withdrawal, the less the withdrawal effects are.

[RLS_ in reply to Hidden]

Yes honestly I wouldn't recommend it unless you work with your Dr. closely. I only went down that path because I was in a pretty bad car accident (thankfully not hurt) and knew I had to take more drastic measures to get off of it. I had tried "weaning" multiple times with no success at all.

[martino]

I take 200mg of Tramulief each day. I also use 2mg of Rotigotine and 600mg of Pregabelin. I have tried to get off the Tramulief and gave up. I think I have now reached a watch and wait phase. In my view Tramulief is helpful but it operates as part of a cocktail. I am soon to be 73.

Do you think the doctor would give you Methadone?

[Jumpey]

Hi.I have successfully used Tramadol for about 5 years. Periodically, it stops working due to tolerance so I take a month drug holiday and it kicks back in again. I take it 6 nights a week to avoid withdrawal when I have to come off it.Good luck .x

[John_naylor]

After DA’s and augmentation I tried Pregablin (badly advised and gave up), Gabapentin which worked a little and then Tramadol which has been my saviour for over 8 years. I take 100mg Tramadol + 1.6 gm Gabapentin and some nights are ok (get up <3 times a night) but if things get really bad I take an extra 50mg Tramadol which relieves symptoms completely within half an hour. I’m reluctant to go over 100mg Tramadol too often as I am wary of Augmentation or tolerance. I value Tramadol and am not afraid of opioids but know that a change to slow release may be the next move.

[Esme2007]

Hi I have had awful restless legs all my life and eventually gave in to medication. I started 150 mg on pregabalin at 7.30 every night and the restless legs has gone and has been for a few months . It is bliss . Although I am always on guard for a return of this awful condition. I have been unwell with other health complications recently and have had to take 60 mg of codeine before bed and again 4 hours later if I’m in bad pain . I hate taking codeine but I hallucinate with tramadol and morphine.

I expect we are all different but I dread augmentation again as it was just the most awful time . Am I at risk of augmentation again due to the codeine ? Happy Easter 🐣

[bedith6]

Hi. I have suffered terrible rls since I was 22 and am now 90. It gets worse and worse as you age. I have tried all the dopamine type drugs and also gabapentin and either they made me ill or didn’t work so GP put me on Tramadol Ibegan with 2. 50 mg tablets and they worked, not 100% but enough to cope . I gradually needed to raise the amount until nowI take 4 tabs and sometimes one more middle of the night. They are no longer working and so my RLS is as bad as ever like you I am tired and exhausted so Ihave written to my GP asking for Temgesic which is an opioid but highly recommended by some of the knowledgeable and specialist Drs in USA. These doctors now seem to recommend the opiate route especially if you have tried everything else. I did not have any side effects from the Tramadol.but as I said I after about three years it has stopped working. Best of luck with your search for relief

[ziggypiggy in reply to bedith6]

After 68 years of suffering I think you're entitled to whatever your heart desires. Safely of course. Hope you find some relief.

[RLS_]

THANK YOU to all who have replied. One thing that we all know is...each person is different and while one "recipe" works for one person, it doesn't mean that same thing will work for another. I think that is why there is still so much work left to figure out exactly how to treat all the RLS/PLMD sufferers out there.

It is so hard to be in that place where you think, "ok lets stop A and give B a try". You are equally filled with hope and skepticism. Often times you have to navigate some terrible nights before you can even tell if this "next option" will have any success. It can just feel so draining but you keep trying and searching for your self and your family.

To everyone out there suffering with this disorder, keep moving forward and lets hope we can all get to a better place with our treatment.

As for my next steps, I am not quite sure what it will look like today. Maybe this next week will offer more clarity as I will be talking with both my Dr. and more of a holistic Dr.

[Momof10]

I was on requip for a few years, kept needing more and more and started needing it in the day time. I couldn’t sit down and watch a movie without taking it, it was getting out of control so I weaned myself off of it. I tried tramalol, it didn’t work. I tried gabapentin and I swear it made it worse. I tried smoking marijuana, (I got it from my son) and it actually helped me fall asleep, it made me so relaxed that I didn’t care about my legs..... but it made my heart race and I didn’t like that feeling. I’m probably too paranoid to smoke . So...... now I do squats. Believe it or not, it helps a lot! When my legs start aggravating me, waking me up, I get up and do squats until my legs burn and then I get back in the bed and go right back to sleep. I started doing this because of something my chiropractor said. He thought restless leg syndrome was caused by poor circulation and that your brain sends signals to your legs to move so that your circulation in your legs will improve. I don’t know..... all I know is doing squats works for me for now and I am grateful!

[wildlegs]

I’ve used Tramodol for ten + years with excellent results.

[Covenant1962 in reply to wildlegs]

Hi wildlegs, what dosage and how do you take it? How do you avoid augmentation or tolerance? Any side effects? I'm fairly new to medications for RLS. I don't want to take any DAs and Gabapentin did not work for me. 1x50mg of tramadol is working but I'm feeling groggy and nauseous the following day.

[wildlegs in reply to Covenant1962]

I’ve had RLS for 30 years as did my mother before that. I started taking Tramodol about 20 years ago and it worked well. I started with 100 mg, then about 5 years later I started taking 200 mg. In 2016 I switched to 300mg and was never bothered by RLS again. Then in 2020 we moved to a different state and it took me four months and a few doctors to get Tramodol again. During that four month stretch I had finally got a pain doctor to give me 200mg and it worked quite well. But now after one and a half years she cut me down to150mg and not so good. I’m hopping I can convince her to go back to 200mgs.I’ve not had any side effects while on Tramodol.

[Joyeux5]

i took tramadol after knee replacement surgery but when i tried to stop, granted too quickly i got really terrible rls symptoms. so be careful using it as a cure

[Whippetmama]

I am 75 and have had RLS my entire life. I currently take 450 mgs of pregabalin and 200 mgs of slow release tramadol and have been in this dose for over a year. Addiction is the least of my concerns. Maybe if I were younger it would be, but at my age "who cares". As long as Tramadol continues to be effective I'll keep taking it.