On baclofen,iron and pramipexole but not getting any relief at my lowest now doctor says he don.t know what to do next seen all doctors i can but no- one seems to have answers apart from this site feels like i.m alone anyone know of any medication that i can suggest to my doctor to at least give me a little relief or at least get my back into bed sleeping down on sofa no delete sleeping down on sofa/floor at night not a inch of floor not walked or rolled over any help please

22 Replies

  • Have you seen a neurologist or anyone other than your GP? If not, ask your GP to refer you. For me the Neupro patches worked when I had augmentation and the tablets were no longer effective. Doctors are sometimes reluctant to prescribe the patches as they are more expensive than tablets but if you can show that you have tried everything else, they might be willing to prescribe them. I still have RLS but it is much better than it used to be. Good luck

  • Thanks for reply yes seen the lot tried patches did.nt work from start so don.t know what's next exhausted all avenues at wits end exhausted myself now started to drop off to sleep at work not good

  • Me too. I'm battling the same thing. I dive into caffeinated aspirin and have

    coffee when I cannot stay awake during a presentation or meeting. I

    know that it kicks me in the rear end at the end of the day but if I fall

    asleep, a lot of people would be in jeopardy. I've had six cups of

    coffee plus caffeine pills (aspirin) to stay awake and it's not enough.

    I end up getting nauseated from caffeine. I'm deciding about trying

    another medicine. I tried Pramipexole .125 and got sick.

  • It's possible that caffeine is your trigger, and that you are just exacerbating your problem. Why not try avoiding caffeine for a day or two to see if your symptoms subside. You may have more than one trigger, so you may not notice a lot of difference, but anything is a start. You could then go on to find if any other food has an effect.

    I found that potassium sorbate food preservative is my main trigger. It brings on symptoms in around 30 minutes. It's found in margarine and other wet foods like dips and sauces. I, and others have found caffeine to be a mild trigger.

  • Have you tried any pain killers.?

  • It may be that the dopamine meds just do not work for you. They only work really well for 6% of RLS patients, and help "some" of about 24%. People like me, they do not work at all for me, so as Elisse has suggested, pain killers (admittedly easier to get in the US) are helpful when one has no other choices left. Have you tried Gabapentin or anything in the anticonvulsive category? Probably so. None of the official RLS meds help me one bit. I have sever chronic pain conditions and the narcotic pain meds are the only thing that has helped me ever. My sleep doc, neurologist, GP, shrink, and pain doctor are all on board, along with some sleep meds that I can tolerate. When doctors do not want to prescribe pain meds for desperate people that have no sleep, no quality of life, they like to go for the "depressed" diagnosis, not really getting it that the sleeplessness is what is causing us to be depressed, not the other way around. I feel so bad for you right now. My neuro and I both dread the day that my pain meds do not work, because there is nothing left to try or do. so, I wish you good luck!

  • Then you will move on to get a morphine pump and additional medicine

    if necessary.

  • Pramipexole worked fine with me but had to stop it as it caused insomnia

  • My immediate reaction is to ask your doctor to prescribe Tramadol possibly 50mg. Of course medications can have different effects on different people but for me Tramadol assists me whenever i need immediate relief. However i understand that it is not to be recommended for long term continual use. Hope this helps

  • I think that tramadol is considered a narcotic or am I wrong? I could take it otherwise and hope to get at least 3 full hours of sleep. I really need a week

    off of work to sleep.

  • I suspect this won't help much - but we are here and listening! One thing I do that gives some relief is to lay on my tummy. If I do that it seems to reduce the RLS a little and also allows you to bend your legs and wave them about, which also helps a little. Make sure there are no breakables around.

  • Lay on your tummy and hook your feet to the end of the mattress. It's worth a try.

  • I have suffered with restless legs for 10 years. The only drug that helps is DIHYDROCODEIN 30MGM taken when the trouble starts--usually about 2 hours after getting into bed. It takes about 20 minutes to work. I have just been prescribed GABAPENTIN but it does not help .

  • The only thing that helps me is dihydrocodeine30 mgm taken when the trouble starts, whi ch is about 2hours after I get into bed.It takes about 20 minutes to work. Then I usually sleep the rest of the night.

  • Yes, I DO understand. I spent over 30 years on the floor everynight rolling around kicking and with my knuckles in my back! Don't know how I survived. I had been to a ton drs, chiroprators, accupunture, yoga, neurologists etc before someone finally diagnosed me a few years ago and I got on meds to help me. Even when I was working 12 hour overnight shifts in the Emergency Room, I would come home and not be able to sleep more than 45 minutes at a time then the BEAST would wake me and it would start all over again. I survived as a mother out of necessity.

    With all that said, When my pramipexole stopped working I took 100mg of tramadol for a week then started back on the pramipexole. Another thing that worked for me was marinol 5 or 10 mg.( marijuana in a pill form ). If it is legal for you, smoking it works faster.I just took it at night about an hour before bed and was fine in the morning.

    Also, I found out that veggies in the nightshade family are EVIL to RLS for me. You can do a trial to see if removing them completely from your diet helps at all. I still have RLS but it is HELL if I eat tomatoes, potatoes, any type of red or green peppers, eggplant and paprika. This stuff is in so many foods. I really have to read labels carefully. So many things have cayenne in them now adays and tomato or potato powder etc.

    I did a nightshade fast for several weeks then introduced them back in. WOW! I found out for sure that I can not eat them at all.

    One night we went out for dinner and I ordered Sweet potato fries. The sweet potato is fine - it is not in the nightshade family. Well, I ended up with bad RLS later. Then I realized, It was because they had been fried in the same oil as the regular potatoes!

    I also avoid apples, beets and cherry juice. They contain solanine which is a chemical that is in nightshade foods. The juice is concentrated so it has the same effect on me. Also, another reason for me to read labels!

    Good luck and remember there are a lot of us who do understand and you are not alone.

  • thanks all for reading and giving me lots of meds i can talk to my doctor about and maybe get a little relief legs going like mad just writing this out once again thanks all what would we do without each other to give advice

  • Hi nick-the-turk, I suffered RLS a long 6-7 years turning/ tossing for just some rest & sleep, but no meds/ exercise helped. Then I tried 1/4 tablet aspirin... it WORKED !

    I could sleep uninterrupted thereafter. Can take another 1/4 tab if re-appears. not to be recommended for long term continual use. Hope this helps. Blessings to all.

  • GuruG First of all, congrats for not reaching for medicines first.

    Amazing that you only used a quarter of an aspirin. I take some every day.

    Maybe less is more. I am going to try taking just that amount for now. Blessings

    to you!

  • Aspirin is still a medicine just an OTC one. Also as stated not recommended for long term. It can cause stomach problems....

  • Its worth asking your doctor if they will pay for acupuncture as I know some surgeries will. I tried it to wean off the tablets before I got my patches (an absolute godsend by the way), but I had to pay for mine and it was quite expensive so had to stop once the augmentation stopped but it did seem to help for a while. I had got to the state where I was willing to chop my legs and arms off. Its worth a shot. Hi everyone by the way!!! The names Lana xx

  • Hi you mentioned paying for youf patches was this for neupro patch? Was this in the UK? Just like to know because my GP in UK says they too expensive to give me.How long did they help brgore augmentation set in? Thanks

  • sorry for the delay in replying and the confusion. I had to pay for the acupuncture not the patches as my local NHS would not pay for it. If it had not been for my specialist I would still be on the Ropinirole which made me worse if anything as thats what started it in the rest of my body as up until I took that I had only ever had it in my legs. It frightened the life out of me the first time it started in my arms etc. But i have nerve problems elsewhere now too now which are still not being treated so as i say until i found this site was starting to give up all hope. i don't have kids, yet another medical problem I'm afraid. i have been on the patches for about 3 years worked up to the 3mg 1mg at a time. Bub have worked out can only wear them on my arms and very rarely on my thighs if i want them hidden to go out as if i put them on my torso they blister like mad. And itch too as they have metal in them apparently according to one xray person i saw but whether that is true i do not know for sure. (but i do have a metal allergy so could be). Hope this helps

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