One man clinical trial

[jaysull]

I discovered, by accident (literally - a painful one!), that one 50mg Tramadol capsule about 2hrs before bed stopped my RLS. The product is not licensed for this indication but It would be interesting to find out if anyone else has tried this.

[Hidden]

i cant take Tramadol myself..but i am aware of lots of people that take it for RLS and i helps them a lot....i must add, im sooo jealous of them, and im very happy it works for you

[jaysull in reply to Hidden]

Interesting - are your symptoms the same as Elisse's?

[Hidden]

Lots of people take Tramadol for RLS. Its an opiod and they work well for most people who have RLS.

Its not one i can take, i tried one 50mg capsule which did nothing for my RLS, i tried taking two 50mg at six hours apart and in the middle of the night i was sooooo sick, i though i was dying....

I wish i could take them, i am sure if i wasnt so sick they would be great for my RLS.

I am pleased they are working for you..

[jaysull in reply to Hidden]

Thanks Elisse - interesting - when you say lots of people could you quantify this?

[Hidden]

I couldnt tell you in numbers how many use Tramadol. But as i belong to other RLS support groups i see where people are taking Tramadol...I believe there are one or two on this group who take Tramadol..

Is there a reason for you to know how many, or are you just curious...

[jaysull in reply to Hidden]

- If there were significant numbers it might be worth carrying out a clinical trial.

[Hidden in reply to jaysull]

Doctors can use Tramadol for RLS, so why would a clinical trial be needed...it might not be approved for RLS like pramipexole, ropinerole or the neupro patch. But there are other medications that are used for RLS that are not approved for RLS that get used...

[fiane]

hi, i'm new to this site, but also suffer with rls. i've been taking tramadol for another condition for a couple of years, and found it doesn't help rls at all.

[Hidden]

thats the biggest problem with RLS !! we all are so different with meds and how they help is. i cant take tramadol either, like Elisse, it makes me sick

[Hidden]

I was given Codeine Phosphate at night for this problem

but after the first dose was seeing visions of red and green which I can't describe

I have never taken any since.

I find the neupro patch helps (with the Parkinsons also)

[gaters]

Hi Mate

I have the same story as you.. I had bad toothache a few months ago and took some of my Dads Tramadol. Well what would you know totally stopped my RLS , which I have had since my teenage years.

When my doctor finally believed that I had RLS last year he prescribed me Ropinorole. YUK!

After taking it for a few months I couldn't take the sickness and mood swings.

So went to another Doctor and told her about Tramadol and she said alot of her patients took it. She prescribed me it and I now have totally unbroken sleep.

Yes I know about the addiction etc etc But what I say is if you've had RLS for many years , you don't really care as long as you get some relief?

Regards Richy

[nightdancer in reply to gaters]

I take morphine and Vicodin, which I know you cannot get over there, at least the Vicodin. Tramadol is a synthetic opiate so it is not like taking morphone or Vicodin. also, codeine helps some people, which I know you can buy over the counter over there, lucky ducks. So, addiction or dependence (2 different things) may happen, but sleep is important and the sooner people understand that and worry less about side effects in some cases, you may get some peace form the RLS monster. By the way, 50 mgs of Tramadol is the lowest dose, so you have a long way to go before you run into any issues. Highest dose is listed at 300 to 400 mgs according to all reputable medical we sites. rxlist.com is absolutely the best one with the most details.

[jumpylegs]

I also take tramadol to supplement my Ropinerole. Sometimes also codeine.

[gaters]

yeah Codeine works fine for me as well..

[nightdancer]

I found out that Tramadol stopped my RLS cold, but we were tryiing to treat my back and neck apin, so it did not work on the pain I have. Tramadol is a synthetic opiate med, so has should have less potential for addcition. Elisse says lots of people use Tramadol. I have groups that number close to 3,000 people, and I would say a quarter of them are using Tramadol alone, and some in combination with other meds. For the person who said it did not work, that is too bad. Obviously from all the posts on this site, everyone is different when it comes to treating RLS, what works for one, the next person cannot take or it just does not work for them. But, it sure did work well for me; had to change to stronger opiates for my back pain, so those take care of my RLS as well, along with a sleep med.

I am not quite sure studies are needed for using trmadol for RLS, at least in the US> Most doctors here KNOW that Tramadol and opiates will help RLS. But, you guys do not have the same options as I do on the other side of the pond as far as using morphine and Vicodin. BUt, I am beginning to think that for British doctors to catch up, they first have to get over their disdain for the internet, and the fact that patients CAN look up credible informaton that could help them treat their patients with more respect and understanding.I am certainly not saying that we do not have doctors that do not respect what their patients are telling them, and think they know it all, because that is certainly not true. More RLS awareness is needed everywhere, in all parts of the world.

BUT, I have to say that Tramadol was my first "magic" pill when it came to RLS.

[jaysull in reply to nightdancer]

Thanks for your comments.

[Hidden in reply to nightdancer]

ooo, welll said Nightdancer, i saw my neurologist this week, and i told him that i had tried a "drugs holiday" as we call it, and that it had made the mirapexin start to work again for me, his answer was " no theres no evidence to support this" !!!, i just told him it did for me!!!, so why do we go to see them when they dont listen to us, i know my body, i live in it, so why!!! cant they accept that we know what helps us, i know they study for years to get to be a consultant, but please listen to us, we are feeling this disease, they can learn from us, isnt that part of helping us, by listening to us, also, he laughs at the idea that rls makes my sciatica and arthritus worse, his advise on that was, "you must rest when its bad dear" D U H !!!!!

[gaters in reply to nightdancer]

Well written xxx

[Hidden]

Oramorph. (liquid morphine) is used here in the UK, someone on this group is using it with good results. I have tried it in the past, but it was another one that knocked me out during the day. I once asked a doctor (not my present doctor) at my surgery about Vicodin and was told it wasnt used at all in the UK as it was toooooo addictive...

I think as far as what you can get from your doctor over here as regarding meds. for RLS, does seem to be down to where you live and if your doctor will listen. Doctors do get jittery when giving out opiods because of the "addiction" label. The vicodin isnt down to the doctors here, that would be down to NICE actually approving for it to be used here.

I know across the pond you are just starting your own battle regarding the opiods because some doctors wanting the FDA to regulate them more. That all comes down to some people who do abuse them, which makes for the ones who need them medically have to fight for what helps them live a better life.

[jaysull in reply to Hidden]

This is why I think a clinical trial to establish RLS as a formal indication for the drug might be useful. Most GPs in the UK are very conservative - and quite rightly so - about 'off license' use.

[Hidden]

I still dont think a clinical trial to use Tramadol is needed.... Most doctors allow it to be used here in the UK for RLS. Its not seen as an additive med. As Tramadol is used for different pain issues as you have already stated thats how you found out it helped your RLS.

I think you would just be unlucky to get a doctor who wouldnt allow its use for RLS..

[thedragon]

I discovered codeine worked by accident..used my sons painkillers when I had nothing else in the house..can't remember what for now! My doctor is happy to prescribe it now. She trusts me to know if it is getting out of hand cos I know how it can and it isn't. I take 2 when I start to get the twinges and its gone in about half an hour. I'm getting a reasonable amount of sleep now but sometimes wake up with it .

[jaysull in reply to thedragon]

Thanks for the info dragon

[Highlighters]

Year I find this helps, I 100 mg Sr tab about 6pm then 50 mg or about 1/2 hour before bed, this helps