Advice please

[TEAH35]

What medication should I begin with I have been told that opiates are the best solution

[Hidden]

You need to get your doctors to say its RLS before we can discuss what meds are best to take, We dont yet know anything about you or your history. You said in your previous post you think you have RLS, can you describe your symptoms, do you have an urge to move your legs, do you have to pace up and down in the night to get relief

[Madlegs1]

Opiates would be a last resort and you will only get them prescribed if you are in major pain.

As Elisse has suggested- you need to see a neurologist or better still, a sleep clinic.

What medications are you on at present.

Have you recently changed meds or started a new one?

What exactly are your symptoms.

Do you relate the attacks with any foods or medications?

Please come back to us with answers , so we can really get to grips with your interesting case.

Cheers.

[ab1234567]

Don't take opiates. Please. Go on Google. Type in the Opiate they're trying to give you, and look at the side effects. Come on, don't you hear all these terrible things that happen?? They get addicted and bad things happen. Do your research.

[Hidden in reply to ab1234567]

Opiates are mostly recommended now for RLS and that is the RLS experts saying that. You dont have to get addicted if you follow the dosage you have been prescribed. Lots of RLSers take opiates and find they are the only meds that work for them. And ALL meds have side effects even a humble aspirin. I would never tell any one not to try opiates, if they give them relief and make their life bearable. I will just add not everyone can tolerate pain meds like opiates. But most can.

[johnmarg]

Assuming u have rls, gabapentin is the first line of defense. It’s recommended to me by Stanford where I go, they r very knowledgeable about it.opiates as a last resort

[Bossy50 in reply to johnmarg]

Gabapentin never works for anyone I know with RLS and Opiates aren't the last resort these days...DA's cause much more harmful side effects than Opiates... research significantly supports Opiates for RLS these days. The most knowledgeable people on RLS are to be found on rls.org and us !!!!

[johnmarg in reply to Bossy50]

Wow what a statement to make. I have severe rls and 600 mg gabapentin works fantastic. I treat at Stanford and have an rls specialty doctor. He would never recommend an opiate over gabapentin.especially with the opiod epidemic we have . Not sure why u would post something like that. U must know many people to say gabapentin doesn’t work. A scientific study shows it 90 percentage effective

[Bossy50 in reply to johnmarg]

Just through the hundreds of people on here..you're lucky. Some people have success with Gabapentin in conjunction with taking another medication but rarely on it's own. I have a specialist Consultant Neurologist too..lots of us on here have. The rls.org is informed by the worlds leading experts. If you go to the site and look at the information for professionals, you'll see the recommended medications. I'd take Opiates over Dopamine Agonists any day in terms of side effects.

With this horrible disease, we take whatever provides us with relief, generally after an awful lot of trial and error. I have tried ALL the recommended drugs, with the exception of a Rotigonole patch.

Gabapentin is a very toxic drug with lots of side effects and you can experience withdrawals when you come off it too.You're in the U.S where Oxy gets prescribed..we don't have that in the UK...we're a bit more careful. Our Doctors aren't quite so influenced by drug companies.

There's nothing like the experience of 100's of your peers re meds..I work within health services myself..and I tend to place great store in the evidence of my fellows. That's why we're on here, to exchange tips and to communicate with others in the same boat of battling this terrible affliction.

Stanford doesn't have any relevance to me.

[LotteM in reply to Bossy50]

Bossy, I find your reaction rather negative - especially for those among us who do benefit from gabapentin - and not constructive either. Mind you, most of the meds prescribed for RLS are ‘heavy’ ones and can have nasty side effects.

It would be nice if you would try to change your attitude. This forum is meant for providing information and support.

[Bossy50 in reply to LotteM]

If you look back I'm just responding to the fear-mongering around Opiates being taken and prescribed..I'm sorry if I appear to be negative that wasn't my intention. It does concern me that people on here tell others not to take Opiates when it's listed as a medication that works..I find that quite dangerous...

[Bossy50 in reply to LotteM]

I do object to the 'Policing' LotteM and also you haven't read what I wrote properly. I didn't say Gabapentin doesn't work altogether. I wrote that no one I know has success with Gaba on it's own and it's written here that other forum members rarely have success with it on it's own either. I also added that Gaba does seem to work well in conjunction with other meds, particularly Opiates. I take both Gabapentin and Dihydrocodeine myself. Please don't ask me to adjust my attitude or suggest I'm not constructive, that is exceptionally rude and controlling...

[LotteM in reply to Bossy50]

Bossy, am I right to think that you react strongly to my phrase "It would be nice if you would try to change your attitude."? If so, then apparently I am still far from mastering the art of uderstatement like the Brits do. For a Dutch person this is an extremely nice way of asking not to to be dismissive of any medicine that may be of help - not without due cause. And gabapentin IS listed as a medication that works. Actually, there is still awfully little info and knowledge about the effect of combinations of meds, and most of it is anecdotical or from Dr.'s practice experience. We have no idea about the success rate of all the meds we discuss here - the forum gives us only a very restricted view on the effects of meds for rls.

I understand from your reaction that your intentions were constructive, but to me it didn't come across that way. By the way, I take a combination of meds too, gabapentin and tramadol.

Let's not get into a "you said, I said" discussion and let's stop stealing this post. I agree wholeheartedly with you about the "fight agsainst opiates" that doesn't seem to consider the potential benefits and importance of their much needed (controlled!) use for those in pain. But that is easy to say from the EU where the attitude towards opiates is different from that in the US. And also, one rarely fights sentiments successfully with sound arguments - unfortunately.

[Alyson66 in reply to Bossy50]

Your name is very discriptive of your personality..

[nightdancer in reply to LotteM]

the idea is that all meds do not work for all people. I know MANY people personally who see Dr. Buchfuhrer for their RLS, and not a one has an issue., and he has been my mentor for 27 years. HIS word is golden.

[LotteM in reply to Bossy50]

By the way, Bossy, Dr. Buchfuhrer is at Stanford. Although I don’t know whether johnmarg is treated personally by him.

[Joolsg in reply to johnmarg]

Hi johnmarg.

Just out of interest, are you on Gabapentin enacarbil?

[Joolsg in reply to johnmarg]

Hi johnmarg,

Just out of interest, are you on Gabapentin enacarbil?

[johnmarg in reply to Joolsg]

I am on regular Gabapentin

[Joolsg in reply to johnmarg]

Thanks for that info

[johnmarg in reply to Joolsg]

No problem. My Doctor also prescribed Ambian to help with sleep. I take it sparingly when I go 2 days with less than 6 hours sleep. He recommended it with no more than 600 MG of the gabapentin. I only take 1/4 tablet which gives me 2 to 4 hours of extra sleep if needed. It has helped tremendously. It almost feels like I dont have the RLS anymore. I only occasionally get one to 2 very light instances and sometimes go a week without it. Before I got up 5 to 6 times every night. Hope this all helps.

[nightdancer in reply to Bossy50]

It is hit and miss with all treatments. I manage RLS groups and have for 27 years, and while Gabapentin does help SOME people, like you said, Bossy, it is usually in combination with other meds. After 27 years of managing RLS groups, I feel I can say this. And you DID say "no one you KNOW". We are all sleep deprived, that is for sure.

[Bossy50 in reply to nightdancer]

Thanks Night Dancer..yes for sure we are all sleep deprived !!!!

[TEAH35 in reply to Bossy50]

No never worked for me

[Smiffyliz]

I have been taking co codamol and previously co proxamol for almost 30 yrs wit no side effects. Just two at night. Don’t work so well last two years so now need other options but don’t think I ever feel I am addicted. Everyone is different and you do need doctors advice

[Bossy50 in reply to Smiffyliz]

Maybe just a straight Opiate in a slightly higher dose will work...well that's what worked for me anyway..I'm so lucky my Doctor is so helpful. I gave him the print out for professionals (it's on rls.org if you didn't know) about recommended medications and he prescribed accordingly. He also kept the print out to keep for using with his other patients too !!! Good luck...

[nightdancer]

RLS experts, in the USA and now in other countries are going from the dopamine meds, because THEY can wreck you, to opiates for the PREFERRED treatment for RLS. Look up the side effects for all potential meds, obviously, but I would take an opiate over ANYTHING on the list. AND, I have tried ALL meds anyway for RLS, on and off the list, and opiates are the only thing that EVER worked for me. period And the side effects of the dopamine meds almost literally killed me.

[Bossy50 in reply to nightdancer]

I can honestly say that after trying them all, Opiates in conjunction with Gabapentin works the best for me...just have to manage developing the tolerance and increased dosage that comes with it. I'd like to take an Opiate holiday to reduce the Opiate a bit..but of course the dilemma is what on earth o I take during the holiday????? I know my RLS will go through the ceiling with some withdrawal and rebound symptoms !! Oh God help us all lol....

[nightdancer]

Also, PLEASE everyone remember when you comment you are saying what DID or DID NOT work for YOU. That is why treating RLS is so hard, different meds for different people. YOUR experience is not what will happen to everyone.

[involuntarydancer]

Grany, you didn’t mention it in your post about your consultant but I hope he checked your serum ferritin and explained the importance of keeping your iron levels high (over 100 is the recommendation of Leading experts in the field).

I’m pretty sure I read somewhere that higher iron levels are thought to prolong the useful life of drugs like Sifrol. They are certainly helpful in the vast majority of Rls sufferers.