Fed up

[larrylamb1973]

I've had restless legs all my life had all strengths of tablets painkillers but nothing working I'm constantly shattered with no sleep every night even been to hospital with them that was useless in 10 mins did nothing I'm end of my tethered my head says I need to sleep my my legs tell me differently

[Madlegs1]

Sorry to hear your story- it is very frustrating and tiring to be where you are.

What medications have you been on over the last year?

There is a good list of meds to avoid on " rls-uk.org"

Another good site worth a read is

rlshelp.org

Hang in there- can you get some shortacting sleeping tablets -ambien is a good one- just to get you the odd good night.

All the best.

[Hidden]

It would help if you could tell us what meds you have tried and if you are taking any meds now for your RLS, Also are you taking any other meds for anything else including any OTC meds.

[larrylamb1973 in reply to Hidden]

I'm on repinorole 4mg now but still not working doctors not bothered say no other tablets can take

[Hidden in reply to larrylamb1973]

As far as I'm​ aware that is too high of a dose.

Search for augmentation in the search box there is some very good information about it. I'm on a phone at the moment and it's too awkward to do it for you.

Also don't worry we will get you some relief, i was at my wits end when I found this place and I'm a hell of a lot better due to the diet, lifestyle and drug information here.

Take care.

[larrylamb1973 in reply to Hidden]

Thank u

[Pippins2]

Larry lamb you are on over twice the new recommended dose of Ropinerole See the post on augmentation which is 15 posts below this one

Pippins2

[larrylamb1973]

Read still none wiser to easing it

[Hidden]

4mgs of Ropinerole its too high and like the augmentation post said you need to come off that med as you sound like you are augmenting. Now to do this you need your doctor;s support. It will mean taking a strong pain med like Tramadol while you wean down off the Ropinerole, as you will feel withdrawals while you wean down. Until you wean off the Ropinerole, then it will not ease. Its not a easy procedure to wean off a dopamine med but can be done and need to be done.

[Alyson66 in reply to Hidden]

Was told to come off prami due to augumention was not told how awful it would be or that i had do it gradually,now on opiates

[larrylamb1973]

I was told to go on it by specialist at the hospital

[Hidden in reply to larrylamb1973]

Was he a specialist neurologist with an interest in RLS because as you'll soon find out these specialists are not very knowledgeable about RLS.

Many people on here have been tormented by the lack on knowledge in the medical field; from GP to Neurologist many prescribe the wrong drugs or some of the right ones at the wrong dose and may ignore much better options altogether.

Painkiller wise you may not have tried them all, you may not have tried the correct dose or you may not have got the timing right. I had been on Tramadol for pain. I kept it that I would take it evening and night when the pain was worse so I could sleep with little effect. When I changed to morning and night the pain was better managed and I got a better nights sleep.

Some of the info on here can be a bit hard to take in but if you are having problems ask as many questions as you need.

There is no such thing as a stupid question, except do you want chocolate?

[Hidden in reply to larrylamb1973]

The specialist didnt know that 4mgs is too high and will cause augmentation. SO, you go back to either your specialist or your GP and explain you are having augmentation and need to come off your med and it needs to be done as said on here.

[mantel]

I took Ropinerol and it stopped working, now take Tramadol and Lyrica and symptoms much better. You are on a very high dose of Ropinerol . I agree with others, it sounds like you are augmenting . Sounds like you need to get yourself off it by cutting down dosage bit by bit until you are off altogether. You will need Tramadol or similar while you are coming off. Your Doc is wrong ,there are other medications.

[larrylamb1973 in reply to mantel]

I've been on tramadol the went on this docs won't listen when I said more tablets they nothing more can do for me so frustrating

[Hidden in reply to larrylamb1973]

New Dr time Larry. You are the person that knows how bad things are for you not the Dr. Demand a referral, (or ask nicely too) to a pain clinic. They understand the opioids better and will prescribe better.

Hope you get help soon.

[Pippins2]

Larrylamb having read about augmentation does it sound like what you are experiencing?

[Pippins2]

Larrylamb sometimes a combination of meds works the best. Have you tried Targinact it is licensed in the UK for RLS. ? Have you tried Gabapentin or Pregablin ( Lyrica)? To be completely honest though if you have augmentation from the 4mg of Ropinerole nothing is going to help very much until you are off it.

[larrylamb1973]

Never heard of argmentation tilll tonight didn't no wat it was pain killer wise doc gave me zapain which was useless get co Codimal from chemist which works most night

[Pippins2 in reply to larrylamb1973]

I just noticed that you only recently joined so its not suprising you havent heard of augmentation --most doctors dont know about it either.You can get prescription strength Co Codamol which are stronger x

[rlswife]

Ah that sounds bad. Have you tried Ropinerol? Slow release 3mg am & pm brings my husband pretty good relief. Just settling to sleep with upper arms troubling him for first hour or so. He uses very cold water to soak his limbs in or an ice pack. Again this brings relief & he does have very severe rls. Hope this helps.

[rlswife in reply to rlswife]

Hi Larry lamb just read all posts. What can I say? 2 x 3mg slow release Ropinerol seems to work. Maybe hubby's upper arm prob is due to augmentation but general relief rest of time is worth it.