I was having a review of my Tramadol prescription recently at my GP's surgery, and my doctor wanted me to cut down from the usual c4-6 capsules a day to 3. I told her the main reason I took them was for RLS, and without them it just went crazy. She then gave me her wonderful words of wisdom for dealing with RLS: "You can always get up and walk around!" To which I replied: "Not exactly something you particularly want to be doing at 3 or 4 am when you just want to sleep, though, is it!!" To which she replied "oh, no." Such ignorance! I should've said to her: "Can you keep getting up and having a walk around as you're seeing patients? That's what you'd be suggesting someone with RLS do if they were having to sit down and do their job all day!!" But I didn't. Will next time though if she's not more helpful. I'm finding I can just about cope on 3 capsules a day, if I take one at around 5.00 pm then the other two before bed. When I've forgotten to take the earlier one I find my legs start jumping around 7.00 pm or 8.00 pm. She originally wanted me to take one in the morning and two before bed, but my legs were just driving me nuts by bedtime. She said that Tramadol is horrible stuff. Actually I think it's bloody brilliant if it means no more RLS, but she wouldn't know that!!
A GP's Suggestion for RLS: I was having... - Restless Legs Syn...
A GP's Suggestion for RLS
Like all drugs if misused it can be horrible and many Drs and people working in addictions do hate it.
However as you said when it works for the RLS it is great. I would have told her that if I could have gotten by on 3 I would have been taking 3! Good that you did pull her, the ignorance of some regarding RLS is dumbfounding! I mean would they say to someone with epilepsy sure you can just lie on the floor and shake?
Get up and walk, ask can she walk for hours non-stop and deal with the pain and fatigue that can cause. Might be worth asking her what she dos know about RLS and its impact on people and what research she has read as they point out how debilitating it can be. Also if she wants you off Tramadol what alternatives has she looked up?
Man it really annoys me how bad some are at their jobs.
Alternatives would be Oxycontin or Tapentadol. I'm on Oxy at present - but wondering about going onto one of the other two as a change. I'm fed up with the Oxy only lasting 8 hrs.
Any thoughts anyone?
My own Dr has retired - so I have to train in a new one. Hopefully they will be knowledgeable about rls. I'llknow on Wednesday.
Good luck for tomorrow. Most doctors don't seem to take the condition seriously, hence my GP's ignorant comment. Mind you, it doesn't help that it has what I think is rather a silly name, ie "restless legs" as that itself kind of belittles the condition, I think.
The name Restless legs Syndrome shouldnt belittle it to a doctor thou. they should be taking it seriously altho we know many dont.
It is known as Willis-Ekbom disease so tell that to your doc be a charity to see if she knows that or looks at you like you've 2 heads as mine did when i asked her about augmentation.
Just a PS. I've even had docs ask me if i know of any meds that will help...fancy that now..want me to find a solution. I googled and made a list of meds that were said to help i printed it out for doc concerned he passed it onto the other doc i see more often she said it was quite an extensive list i put together..that was that.
If you didn't laugh you would cry.
In fairness, she is only on a par with most GPs in terms of her lack of understanding of RLS but really ...
Have you tried taking any other drugs in conjunction with the tramadol. I found that a cocktail of drugs at low doses was more effective than one drug at a higher dose. I took a low dose (100-150mg) of pregabain (Lyrica), which was useless on its own, at the same time as I was taking an opioid (in my case oxycontin) and could cut the amount of oxycontin I needed quite a bit.
I was originally on Tramadol for pain relief from sciatica. It was only as a pleasant side-effect I discovered I stopped suffering from RLS. I'd cut right down on it until I started to get bad pain in my foot as well, which turned out to be a stress fracture, but even now that's no better and they don't think they can do anything further for my foot (had to wear a "boot" for nearly 3 months). I did say to my GP that I wasn't sure how much pain relief Tramadol actually provided. Unfortunately I've since discovered that the answer to that is rather a lot! If I ever manage to be pain-free from my back/leg/foot I will look at alternatives for my RLS. Might even end up having to increase the dosage of Tramadol again, but won't without going back to her and telling her exactly what life for me is like at such a low dose.
How much is a "capsule"? This could be anything? I take 50mg and it is not enough. But how much is too much and how much is not enough? I also take Gabapentin and I am trying to get of Pamipexole. I don't think the 900 mg Gabapentin is doing much and if I try to drop the 3mg of Pramipexole any lower all hell breaks out and I become dysfunctional.
A capsule contains 50mg. So 150mg seems to be the minimum I can just about cope with.
Don't quote me on this, but the gabapentin won't work until you are weaned off the pramipexole which has to be done very slowly and carefully.
Hi, have you tried pramapexil? I have had rls for about 25 years now 😪 But I was put on pramapexil about 12 years ago AMAZING!! I take 2 a day. Considering it had been unbearable for 13 years before, I was suicidal at times, just through tiredness I just used to pace most of the night or just stand!! All that & no energy to cope with 2 small children I was exhausted Looking back I really don't know how I survived. I hope these tablets never stop working 😂 Although a couple of weeks ago i did start to get the symptoms back(thought oh no don't say they have stopped working) so went to doctors she said there's is a connection with rls & iron levels maybe they have dropped, so had blood test @ yes my iron had dropped so I take 1 iron tablet about an hour before bed (as that's when it drops at the end of the day) & yay back to no rls!!
Maybe have a try of these??
Paula x
Hi Paulamaria, I'm so glad you've found something that works for you. Even with Tramadol there have been odd moments when I've felt RLS, but fortunately nothing much has come of it, until now. Last night was pretty bad for a while so I'm going to have to take a look at increasing my dose to 4 capsules (ie 4 x 50mg), loading it up for the afternoon/evening. I've never had any specific tests for RLS but know that ferritin levels are involved and we need a much higher ferritin level than a non-RLS sufferer. Hope you stay RLS free!
I agree that the Tramadol is great for stopping movement. I am not sure of its formulation but I take, along with 2700mg of Gabapentin, 100mg of Tramulief at 12 hour intervals. I have always understood Tramulief to be a long lasting Tramadol.
Tramadol, or Tramadol Hydrochloride to give it is full name, is a synthetic opiate, but other than that, and what you can glean from "hydrochloride" I don't know its formulation either. I didn't think it was supposed to have long-term usage problems, but someone else here might know better. I've not heard of Tramulief. I need a minimum of 150mg of Tramadol to give me some sort of relief from RLS, provided I start later in the day with 50mg and then take 100mg before bedtime, but last night it didn't seem to work well, so might have to consider 100mg at, say, 5.00 pm and 100mg at bedtime. I do want to cut down on its use, but at the same time don't want to be stuck with the torture of RLS.
The very highest dose for Tramadol, is 400mg a day. The RLS experts do say these days, that taking the opiates for RLS, are better than any of the other meds for RLS.
Miropex works wonders. Just started it after 30years of limited sleep due to RLS. Stopped it first night!
Glad you've found something that works for you Buddy2222. How long have you been on it?
Three weeks. No side effects, no RLS. I hope it continues to work. Finally I am not wandering the floors all night
Glad you have got relief after all these years. Just remember to keep the dose to no more than two of the lowest doses, to avoid augmentation.
I think it can be a horrible and dangerous drug: my husband developed addiction and tolerance to it following transplant. BUT your situation is very different, you seem to be open to the suggestion of taking as few as possible that will still offer relief. You are being so brave. Good luck and give that doctor the rough side of your tongue if necessary! X
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