Hi. I wonder if anyone has experienced tolerance while on Tramadol for rls and what they did about it. I have been on Tramadol for 6 months and it was by far the best medication I have been on adn worked a treat at first. But I am now finding it less and less effective and I am up frequently in the night. If I do squats it settles the rls down but only for a few hours. I am exhausted with constant broken sleep during the night now. Its a bit distressing as it likely means a change to another medication. I would love to know if anyone has faced this and what they did? Thanks again for the help.
Tramadol Tolerance: Hi. I wonder if... - Restless Legs Syn...
Tramadol Tolerance
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GaryHB
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Yes, you can develop tolerance to Tramadol in a matter of weeks or months. prescription-drug.addiction...
Some on this forum have found that if they don't take it for a month they then find it works again for a period, but eventually stops working altogether. Others on here have said that they have augmented on Tramadol.
The blog linked above mentions stop/starting Tramadol but warns: "However, tramadol withdrawal may occur with unpleasant symptoms. Tolerance still effects the brain and may develop into tramadol dependence. When this happens, it is important to work with your doctor to decrease your doses under medical supervision as to ease any potential withdrawal symptoms."
As to whether/what to replace Tramadol: this does get asked here and there have been various suggestions including Temgesic/Buprenorphine etc. See this chain for example:
healthunlocked.com/rlsuk/po...
Hopefully someone with more experience/knowledge will Reply to you. Perhaps SueJohnson or Joolsg
(Note: Kratom, as referenced by Teddi below, cannot be legally sold for human consumption in the EU or the UK. Kraatje advise this on their website, and may reference it on their packaging. However, some other UK RLS sufferers have sourced it from the Netherlands and have found it useful).
Good luck
Thank you so much for your reply. I have only recently joined this group and I find it such a help and everyone is really supportive. I have seen Temgesic come up a few times and I am going to look into that. I have also ordered some ree vein Kratom from the Netherlands. I'll see how that works. Some people have said it works brilliantly for rls.
Yes indeed, and here's hoping.
I've had no cause to try it, but only reference the 'not for human consumption' bit because recently a couple of forum members have been freaked by the unexpected messaging on their product or paperwork!
Hi and yes. The supplier warned me it would be labelled that way. 👍
Hi. Consider ordering some red vein kratom powder until you figure out your meds. It will work quickly in the middle of the night so you can get back to sleep. kraatje.eu (as tea).
Thank you for your reply. I appreciate it. I have just ordered some. Do you have any advice on how much to take and how to take it?
Hi. So glad you are trying it out as I hate to read of such suffering. Kratom is not perfect but it can be such a help and a great backup.
Start with 1/2 of a teaspoon in water or juice and see how you feel. Add another 1/2 teaspoon if you have no relief within an hour. Keep adding until you feel relief, but it shouldn't take more than 1-2 teaspoons, at least at first. The powder is nasty and annoying but the relief is priceless.
I just keep it by my bed with water so I don't have to get up. For me, my rls is gone within 10-15 minutes! I also use the capsules. Recently it seems that 2 teaspoons of kratom, along with 4 capsules of it, gets me through most of the night. Another member said recently that he takes 6 capsules every night of red menga.
Let me know how it goes and I hope it gets to you soon so you can sleep!
That is very helpful. Thank you so much for the trouble you have gone to to advise me. I really appreciate it. I'm hoping the Kratom will arrive today or tomorrow. Incidentally I took a Melatonin last night and that helped for half the night. So an improvement!
You are welcome and thank you for the note. Can't wait to hear how it goes; fingers crossed it gets there today.
Great and interesting about the melatonin! It makes rls worse for some people...I should try it and see if it helps me or hurts! Thanks and good luck.
One of the side effects I also have from the Tramadol is heart palpitations and its these that contribute to the difficulty in falling asleep. They are pretty intense... my heart feels like it is pounding. But last night I took 200mg melatonin an hour before bed together with 50mg Tramadol and I I felt very sleepy and feel asleep straight away. It was really good. I hope it works for you. I'll keep you posted on the Kratom. Thanks again.
I've been on tramadol for several years and I find it less and less useful. Actually I think I am augmenting. Now sometimes it only works for about 90 minutes. I tried increasing my dose from 50 to 100 mg taken at one time and that seems to work a bit better but tramadol does keep me awake so it's not helpful for sleeping. I am prescribed methadone and will start that in a couple weeks to see if that works better.
GaryHB in reply to
Thanks for your reply. It would seem that tolerance or augmentation are a definite issue. I have added another dose into my routine and that has helped. I am now on 200mg per day spread across the day in 50mg doses.
Blissy01 in reply to
have you tried Percocet yet?? I have found immense relief from the low-dose prescription. I take one tonight before bed and sleep through the night comfortably.
Thats so encouraging to hear. No I haven't tried it. My last visit to my Doctor we discussed other options and he said to me I shouldn't go down that route because of the addictive nature of those strong opiates. But I'm very encouraged to hear it works so well.
yes, I too was concerned about the addiction possibility to Percocet. My neurologist and sleep center Dr. aren’t very worried about it because it’s such a low dosage that I take. Plus, the way I look at it, I thought, I have Parkinsons, which has no cure, and take oral pills to help me feel better. So why not take something over for RLS that has no cure either ! Ha ha.
Yes I have experienced Tramadol tolerance many times. I took a month's drug holiday and it kicked back in again. This worked for several years.Good luck.
I augmented on Ropinirole and used Tramadol during withdrawal. I remember it worked really well for the first week and then seemed to make the RLS worse.I quickly learned it's the only opioid thst also causes augmentation, especially if you've been on dopaminergic drugs before.
Rather than increase, switch to another low dose opioid like Oxycontin or Buprenorphine.
As you're in the UK, your GP may refuse to prescribe Oxycontin or Buprenorphine so gather up evidence to persuade them. The Mayo algorithm and the Massachussetts opioid study in the USA are good resources. You may find they refuse to accept US evidence and refer to NICE CKS guidance which is very outdated.
I am on Buprenorphine and my Neurologist at King's College London initially refused to consider Buprenorphine. I argued my case and he eventually agreed as long as my GP agreed to prescribe. Luckily she did.
That is so helpful. Thank you! Interesting you say Tramadol is the only opiate that causes tolerance and augmentation and yes I experienced constant augmentation on pramipexole when I was on it for 20 years. Buprenorphine has come up a few times and I've made a not if it. Have you experienced any tolerance or augmentation with it?
No. I've been on 0.4mg Buprenorphine since July 2021. I haven't needed to increase the dose.My RLS is 0/40 on the IRLSS scale.
There have been no reports of augmentation on Buprenorphine.
Methadone also doesn't appear to cause augmentation and patients have been on the same dose for decades so tolerance is also rare.
Have a look at the Massachussetts Opioid Study.
I’ve been on Tramadol for about 12 years, my first dose was a 50 mg pill, after about a year, I don’t remember exactly, I stated getting my RLS earlier than usual, at around 7PM so since earlier on I had learned to keep medicated ahead of the RLS onset, I started taking the pill at 5:30 and that worked very well. However, I noticed that it wasn’t getting me through the night so I started taking a second 50 mg pill at 10:30PM and have been on the same dose since with excellent results. As for the sleeping, yes, Tramadol does keep me awake or gives me interrupted sleep, usually after 3/4 days I’ll get a full nights sleep. My trade off is that I’d rather not sleep well, take a nap during the day, which I do, but I’m FREE of RLS. Weigh your decision, unfortunately with RLS we all have side problems with medications, but for me being free of RLS during the night is a blessing. I watch a lot of movies and eventually fall asleep around 4/5. Good luck. I refuse to take sleep enhancers but I do take a potassium capsule before 1AM and I feel that helps.
I appreciate your help. Thank you.
Chris, I’ve been fighting Parkinson’s for 15 years and RLS for approximately eight years. I was prescribed Percocet after my DBS surgery and realized my legs were comfortable on nights with a low dosage of Percocet . After speaking with a Dr at the sleep department, they said that prescription Percocet was used often in Parkinson’s patients with RLS symptoms.
I take a pill about an hour before bedtime each night now, and get a full nights rest. I don’t wake up very groggy either, which was a concern of mine when I was taking gabapentin. I hope this helps! Good luck!
I was just reading today an article in the Washington Post about how Intense exercise can slow the progression of Parkinson’s and even improve the symptoms washingtonpost.com/wellness... The problem is that intense exercise can make RLS worse for many but it is worth a try to see if that is the case for you.
Since you can't access the article I put it out on the Parkinson's forum.
I’ve been taking tramadol for 12 years and it works.
I am on Tramadol and experience the same thing. In discussion with my neurologist we have decided that I’ll try alternating between Tramadol and Oxycodone in an effort to keep the dose of both as low as possible and to guard against risk of augmenting on the Tramadol.
I’m still experimenting a bit to see what type of alternating works best for me. Ideally I think two weeks for each medication would be good. However, I much prefer the Tramadol over the Oxycodone so I’ve been changing about every 3 or 4 nights. I did ask my doctor about the possibility of changing to another medication such as methadone, but he is not comfortable prescribing that so I have to make the best of this. I am taking 100mg extended release Tramadol and in addition 50 mg of immediate release tramadol. I’m allowed another 50mg if needed but I rarely allow myself to take it. On the nights I take Oxycodone I am allowed 5-15mgs but I rarely take more than 10mg. He won’t give me extended release oxy, which would be OxyContin as he says it is too addicting. The Oxycodone tends to wear off in a few hours so I’m up a couple of times each night. I’ve seen where someone else alternates between Tramadol and a sleeping pill and that is working for her. I hope this was helpful.
Good luck!
That was really helpful. Thank you. And yes it would appear alternating between 2 meds is the way to go. I used to alternate between Pramipexole and Codeine but I didnt like either of them tbh. I prefer Tramadol - bar for the tolerance developing. Thanks again.
Hello Gary - I think I'm one of the lucky people! I've been on Tramadol on and off for over 15 years and still use it as back up. I've also been on Gabapentin, Pramipexole, etc., etc. but have now settled with Neupro which works like magic but I don't know for how long. Neupro was prescribed for me by a neurologist, its other name is rotigotine. Although forums like this are great for us to share our experiences I do think a load of twaddle is posted. Number one thing for everyone to do is SEE A NEUROLOGIST!!! This is a neurological complaint which is why Tramadol works initially. You need a blood test for ferritin because you could simply need prescribed iron.
Thank you. Much appreciated. Neupro is one drug I have never tried. Although having moved away from Pramipexole after 20 years on it - I far prefer Tramadol. I think I had an ordinary iron blood test done. Would that cover ferritin? My GP did refer me many years ago to a Neurologist. Sadly they were terrible - no suggestions that my GP hadn't already made.
Try again for the neurologist! Neupro comes in patch form and I believe is quite expensive, I'm not sure if GPs are allowed to initiate a prescription. It's a Parkinson's medication which I also believe is used off licence. I get very angry about the Tramadol issue when we run the risk of some do-gooding group deciding we're all junkies. I take a basic four a day as back-up for Neupro but I also have fibromyalgia and Tramadol works for that too - when I'm having a bad time I might take an extra two or even four spread out over 24 hours. As soon as I get better I drop back down again. Re the iron - no, ordinary blood tests won't show whether you have a ferritin problem. Your GP has to specifically ask for it, although I went the other way round because my neurologist gave the GP instructions. To be honest I just couldn't get anywhere (I have other problems too, all linked) so I paid £250 to see a consultant neurologist privately and he took over for me. Then I paid another £250+ to see a pain consultant and that brought massive benefits too - I'm now officially under the wing of our hospital's pain clinic. If you're a football fan it's the equivalent of a private box for the World Cup final!!! Depending on your circumstances it's possible to get a medical loan which would allow you to spread any private fees over a year interest free. I've got one. I really hope that something I've written might help you, I know what it's like to fight this for years - I've had mine for more than 50 years.
Wow some battle you have been through. Thanks for your honesty. I am very encouraged to hear you are taking 4 Tramadol - its what I am on - it only works if I take it every 6 hours through the day. And yes I had the same comment from my GP about 'addiction'. He was loath to give me even 3 Tramadol. If they have never experienced it they really dont know what its like as you say. Thats why I joined this forum- to figure out the way forward from other sufferers. I admit dependency on Tramadol but I am not addicted! Thanks again - everyone's reply has been so encouraging and helpful. I will pursue the ferritin blood test.
Neupro is another dopamine agonist. As Gary was on Pramipexole for years and suffered augmentation, he will quickly augment again. I'm glad it's working for you so far but keep an eye on augmentation symptoms.Dr Christopher Early at Johns Hopkins, who co wrote the Mayo algorithm, will not see new RLS patients unless they agree to withdraw from all DAs.
Dr Winkelman, another RLS expert, explains that MOST neurologists are unaware of the scale of augmentation and happily prescribe more DAs and over prescribe.
It's a recurring problem on most RLS help forums.
Dr Winkelman's article attached.
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