I was wondering if anyone can help me. I've suffered from RLS my entire life (53 years and counting) but didn't realise that it was RLS until I was in my 40s. I've never taken meds for it as, although it was much worse when I was younger, in the last 20 years or so it only really bothered me for a few days once a month. Also, having had it all my life I've just kind of dealt with it as one of those things, however unpleasant. However, all that changed when I started with sciatica 8 months ago. I was given Tramadol , and then as the pain got worse I ended up on 400g of Tramadol a day (plus 4000g of paracetamol as well 3 months ago). I noticed that all the time I was taking Tramadol I never suffered from RLS, except for a couple of occasions when I stopped taking it and it drove my RLS crazy, so I started taking the full whack again. I've now had lumbar decompression surgery to treat the sciatica, which has been successful. It's now 2 and a half weeks since I had the surgery, and I've weaned myself off Tramadol and stopped taking the paracetamol. However, my RLS has been driving me crazy every night the whole time. I know it's used as a treatment for RLS in low doses, and I even tried on a couple of nights taking 100g of Tramadol but it made no difference. What I'm asking is, does anyone have experience of withdrawal from a drug such as Tramadol, and how long my RLS symptoms will be augmented by it? To be honest I found my RLS had got worse even before I started withdrawing from Tramadol, so could it be the back surgery, or a combination of both? I'm at the point of going to my doctors for help, but if even taking Tramadol doesn't help any more, what could they do? Any help or advice would be greatly appreciated.
Tramadol Withdrawal Hell: I was... - Restless Legs Syn...
Tramadol Withdrawal Hell
So are you taking any meds for your RLS now.? Even if you have stopped the Tramadol, your RLS will still be there. So, you need something to replace the Tramadol for your RLS.
Hi Elisse, no, as I said I've never taken anything for my RLS, and the Tramadol was for sciatica. Now I've had my operation I need to come off my pain meds, and am wondering if anyone's done this and knows how long this will last. I've tried taking 100g of Tramadol again at bedtime to see if it stopped the RLS, but it makes no difference.
Hi mumofsam,
I've been on Tramadol for about 4 years along with other meds, and as expected without much success . However, over the past 4 months I have conducted an experiment by taking 1 tram as soon as I get up ( mainly for arthuritritus) another at noon followed by one more at 3 pm.
At 8pm I take my last tram ( 50mg) and 1 x OxyNorm 5 mg, and am pleased to say my RLS has almost stopped. I get unbroken sleep and no symptoms during the day. See your doctor about taking OxyNorm it may help.
Hi mumof Sam,First of all I am pleased your surgery has been a success ,I at the same operation 20 years ago .Sorry you are now having problems with your RLS.Here is what I think is happening
1/ After surgery is a notorious time for RLS ramping up, I hear of this happening every day.
2/ For some reason back, hip and knee surgery seem to be the worst offenders .
3/ After back surgery you really need your rest so its not a good time to be knocking off a medication which will result as you know from your previous experience in an increase in your RLS.
4/As you probably already know the total cause of RLS is not known but it is thought to be connected to faulty dopamine receptors which is why the dopamine meds work so well for many of us, Meds that block dopamine prodution and receptors eg antidepressants, anti sickness and antihistamines make RLS worse.
5/As Tramadol is an opiate med (albeit a man made opiate) it increases the amount of dopamine being produced which is why we get RLS relief . Therefore while ever you have been taking Tramadol your RLS has been great.
6/ Now unfortunately the adverse effect of this is our body thinks wow all this extra dopamine I dont need to make as much of this myself so the brain compensates by making less naturally .
7/ Then BANG you stop taking the Tramadol , your dopamine supply is cut off , your brain is depleted of dopamine it is screaming out for dopamine , your dopamine receptors are sluggish and so therefore your RLS is raging!
8/You have gone from 400mg of Tramadol down to zero in 2 weeks which is waaaaay too fast.Your brain hasn't had time to slowly adjust tothe lowering levels of dopamine and hasnt had time to start making much of its own yet.
8/ I would suggest you go back on your Tramadol as 2 weeks after major surgery is not the time to be going through withdrawal hell.I would cut back on the Tramadol extremely slowly. Cut back by just 50mg a day, preferably from the morning dose.I would keep at that for 2 weeks then cut back another 50mh from the afternoon dose etc.I would stay at each cut back for 2 weeks the eventually I would knock off the morninh one altogether and keep going like that until you are just taking it I the eveninh and bedtime.
I would still go to my GP and tell him what is happening and how you intend to wean down very slowly and ask for his support.
Of course there may also have been some natural progression too and you may find you now need a treatment for your RLS and theres lots to try if needs be but give yourself time to get over the op and for your body to adjust .Maybe once you are over the post op ramping up you may be able to drop to a weaker opiate like Codeine or even weaker Co codamol. Disclaimer (lol) this is solely my own opiniom , check with your doctor. Good luck ..Pipps x Oh and get your ferratin iron checked it needs to be over 70 as surgery equals blood loss
Thanks Pipps. I was hoping there might be someone on here who's been through the same surgery too, and I hope yours is still working for you. I must admit I'd wondered if I'd come off it too fast. The trouble is, I have a limited supply left, and my doctor was growing increasingly reluctant to let me have it as I was taking so much. However, everything you say makes sense and, as you say, I'll have to go back to my GP and explain the situation. The annoying thing at the hospital was that even though I told them pre-op and many times post-op, and they appeared to be listening, they then just ignore what you've said. Someone had crossed off tramadol from my notes, and they were giving me codeine, until yet again I told them I had to have tramadol. Thank God I'd taken my own supply in with me secretly, thanks to someone's advice on here! Then, when I left hospital, they only gave me 10 capsules for 5 days' pain relief!
Just to add to what's already been said. While tramadol acts on the opioid receptors, it also has an anti-depressant affect on serotonin and norepinephrine. The reason tramadol withdrawal is so bad is, as far as your brain is concerned, you're withdrawing from two meds (the opiate and the anti-depressant), not one. Tapering off tramadol needs to be done slowly. You really should wait at least 3 to 5 days before lowering your dose (by 25 mg). Besides being extremely unpleasant, going off tramadol too fast lowers the seizure threshold and can actually be dangerous.
Thanks, that's very interesting! I'm definitely going to have to go back on the tramadol and see my GP to explain why I still need it. Didn't know it could be dangerous to come off it too fast, or indeed what "fast" is - you'd think there be a warning somewhere, instead of just general encouragement from the medical profession to stop.
As you may be aware meds behave differently with people but with me one 50mg tramadol and one 50mg ropinirole works (at the moment at least)
Maybe this will help?
I am a Pharmacist that just went to a Pain Management Seminar a few weeks ago.
One of the points made was that Tramadol Withdrawal is a Serotonin Problem.
You may want to add Lyrica at bedtime.....
Thanks Gerry. It would be great if you could spread the word to your colleagues that tramadol isn't just a painkiller, and those with RLS as well as pain shouldn't be encouraged to withdraw from it as soon as the pain has been dealt with as the brain has become dependent on it for seratonin. There seems to be a huge level of ignorance out there and they don't listen to you no matter how much you explain the problem. What is Lyrica?
Do some research on Lyrica. It's being used with Tramadol for RLS. It enables you to reduce your dosage of Tramadol. Does not have any of the Withdrawal problems.
Also using Magnesium Oil on your legs helps. Easily Absorbed.
Also a recent study found that 75% of people with RLS were Iron Deficient.
My favorite exercise for RLS is using a Rebounder....
Thanks again Gerry. Should have said dopamine not seratonin before! I've had blood tests and they've not mentioned low iron levels, but then they might not have been looking for that so will ask again. A nurse had expressed surprise that I wasn't on magnesium - is it more effective as an oil rather than taken orally?
Magnesium at Higher Levels can cause Diarrhea. External Application doesn't cause this problem. Also the Magnesium is being applied right at the Muscle site that is causing the pain...
I don't suffer from pain, Gerry. My symptoms are more like an itching sensation, rather like if your muscles are itching. Another way I'd describe it is as if you can imagine the sensation you get when you need to stretch your legs, magnified thousands of times, it's kind of like that. No pain though - does that make a difference?
Do You Have Any Feelings of Muscle Cramping?
No Gerry. No pain of any sort. I had muscle cramp pain in my right calf and buttock with sciatica. With RLS all the sensations I get are in my thighs. Occasionally there's a slight, and I mean slight, aching, but mostly it's as I've already described.
What Have Your MDs said
I've never really seen my GP about this. I mentioned it once to one of the doctors at my surgery, and he seemed very knowledgeable about it and understood exactly what I was saying. However, he mentioned anti-depressants as a remedy, and I most certainly wouldn't want that. That was several years ago, so he might be more aware of the meds in use now. However, I will have to see my GP about RLS as the next time I want tramadol they're going to want to see me first.
I've been on Tramadol for years.
It helps in the beginning but loses some of its effect over time.
I also take Lyrica at times to help.
It's best to take 2 or 3 different types of meds instead of one med at a high dose.
But then again you say you only have itching, not pain so I don't think that Tramadol would be appropriate.
Gerry, Tramadol is a standard and very common treatment for RLS, so it's entirely appropriate, and it works! I don't "only have itching" as you put it. Like the majority of people who suffer from RLS, I have a horrible creepy crawly sensation under the skin in both thighs which makes it torture to keep your legs still and is only relieved, temporarily, by movement. It's a neurological condition caused by a deficiency in dopamine and any opiate-based medication, Tramadol being one, helps. I don't actually find Tramadol works that well for pain.
Have You Checked Your Iron Level?
I had blood taken about a month before I had surgery 3 weeks ago, and blood taken on the day of surgery. I don't know if iron levels would be tested for? Other than that it's been several years since I had any blood tests, and nothing came back about iron, although I know low Irwin levels is symptomatic of RLS. When I finally talk to my GP about this I'm sure I'll be tested then.
Make sure you keep a copy of all of your Blood Tests.Also tell them to run some test results that you feel you may need.You can't believe how often they misread the results..
Yes, I know they get it wrong. Several years ago I was rung by my surgery after a blood test to be told that I was very low on calcium. So I rushed out and bought calcium supplements and took them for a couple of months before getting fed up. Then a year or more later I mentioned the results when at the surgery, only to be told that at the time all the results were coming back from the hospital showing calcium deficiency! No-one had ever bothered getting in touch to say there'd been a problem with the lab at the hospital and the result was incorrect!
Now I've got laptop rather than having to use phone I can see all the posts much more clearly, I'm confused now - what is the difference between serotonin and dopamine 'cos I'm obviously getting them confused?
My RLS got worse as I have aged. It is genetic. Your cells stop producing the neurotransmitters you need to stop the involuntary movement. Whatever you take will replace what you don't produce any more.
Now about surgery causing worse symptoms. It wasn't the surgery it was the pain killers they gave you so you didn't suffer pain from the operation. If you wait the withdrawal from opiates will settle down, but RLS will keep going. A dopamine agonist will probable be in your future just like you had Parkinson's disease. Both RLS and parkinson's involve dopamine neurotransmitter. RLS is for not producing enough and Parkinson's is the cause by the deterioration of the Substacia Negra, and the need to overload the system with Dopamine. try as we may we cannot live without the substitute for normal production of this neurotransmitter.
Good luck and remember that it is not heroic or noble to endure suffering.
Thanks Windwalker. That's a lot to take in. I've always been the sort of person who hated taking any kind of medication, and I also hate going to the doctors. But you're right, it's stupid to suffer if I don't have to.
I also suffer with RLS and finally found something that works for me.My doctor has me on a regimen of 900 MG of gabapentin 2 MG of ropinorol and 10 MG of hydrocodone it has worked well for me just sharing to try to help you with your problem hope it can be of some use to you good luck my friend
Thanks Jopeeep. I'm pleased you've found something that works for you.
I got addicted to tramadol - RLS was much worse then - took me 2 weeks to detox most of that time spent in the bath. Tramadol is known (Spanish research) to make RLS worse. I still tak tramadol but only 3 X 50 mgs or 4 each day. I stopped the paracetamol as well. I am now of the firm opinion that less is more and keeping any medication to the lowest you can cope with. I now have neupro patches which so far have been really helpful so far. No doubt they will run their course like every thing else. I believe in the power of cold packs and heat packs these help enormously and have no side effects.
Hazel. xxx
I too am on Neu Pro patches. They were the only thing that worked. Now, after two yrs I have an augmentation problem.It’s taking more patches now for relief.
Also discovered that antacids taken with Neu pro cause terrible ramping up of rls.
Hazel, I totally agree with you that you need to keep any medication to the lowest you can cope with. The irony for me is that I've always hated taking painkillers and would normally rather suffer pain than take drugs. I stopped taking paracetamol almost immediately, having been on the maximum dose. I had a bit of a headache for a few days, but then that's to be expected. However, of course it's totally different when you can't sleep due to the torture of RLS and you don't know how long it's going to go on for when you've already been suffering every night for a fortnight, and its not showing any signs of lessening. Well done you for getting the dose right down. This is what I intend to do. However, two weeks was far too quick for my body to cope with - maybe it depends on how long you've been taking tramadol? I'd been taking the maximum dose for nearly 6 months? I've gone back to 300mg a day, which is 100mg a day less than I had been one, and will continue to reduce it very gradually. Have you ever managed to cope with less than 150mg a day? I'd have thought 150mg to 200mg a day plus other meds is still quite high? Or maybe I'm kidding myself?
Truthfully I take tramadol for back issues but more so for the RLS but I also use chamomile tea which is a natural relaxant/sedative. The RLS is a neurological issue that I donot believe is worsened by your surgery. I had just observed that if I ingest too much sugar during day then my RLS is horribly worse that night.
Hi Cynthia, I'm glad you've found things that seem to be working for you. As for back surgery causing RLS, your be amazed how many people on here are suffering from secondary RLS following certain types of surgery, back surgery being a prime culprit. It's always interesting how a thing that affects person doesn't affect another, ie I've never heard about sugar affecting RLS.
I’ve taken 300 mg of Tramadol for my RLS for over a year and have been free from RLS the whole time. I’ve twitched and walked enough nights (20😩 years) to know I’ll keep taking it. I’m 74 now and have no plans on stop taking it.
Please see my post under RLS symptoms. I have taken RLS for over 22 years and am now working on getting off the drug and trying new therapy. I will let the RLS community know how it all turns out. My heart goes out to you as I have now gone 4 days straight without one wink of sleep. This is a terrible disease that effects all aspects of quality of life, Wishing you well let us know how you are doing and I will post what I am going to be doing now that I am tramadol free. (1st day free) Last night it was hell but they say it will get better. I sure hope so. Take care and I will let you know what they are going to do with my RLS now that I am off tramadol. BTTHEMD
I hope things go well for you. Reading back, I tried without Tramadol for about a fortnight but the symptoms never lessened so I gave up, and 3 years on I’m still taking it, and have now realised that the Pregabalin I was also prescribed a few months later affects RLS if stopped, so I can’t stop that either for now. I will, at some stage, go to the doctors and try an alternative, but (a) I hate going to the doctors and (b) finding a GP who actually knows anything about RLS is like finding a needle in a haystack!
I am caught in a similar situation. RLS has gone but sciatica pain is very much there. I have been taking 100mg long acting Tramadol. When I try to reduce it even by 25mg I suffer from acute RLS Symptoms. It is more in the forearm than in legs.
That was 3 years ago for me. I weaned off Tramadol and Pregabalin a few months later, with the help of my GP. As I was weaning off I discovered that I was suffering from RLS in my left arm, neck and base of my spine, as well as my legs. I spent about 8 or 9 months meds free, suffering really badly and waiting for things to go back to “normal”, thinking that this was all just withdrawal hell. I was suffering from insomnia too. After 8 or 9 months I realised it wasn’t getting any better, so went back to my GP and started taking Pregabalin again. It helped with the insomnia, and here I am nearly 3 years later now suffering from RLS almost every night, in my legs, left arm, neck and base of my spine, and the Pregabalin hardly touches it. So I’ve realised that Tramadol has caused permanent damage to the dopamine receptors in my brain. After a lifetime of RLS it had finally settled down to only bothering me for two or three days a month and was only ever in my legs. Not any more though. Now I’m left in this state thanks to Tramadol. Wish I’d never come across it.
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