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Rls relief what works best ??

Posted , 8 users are following.

frankiej79
frankiej79

Hey all I have severe Rls for over 15 years been working with my doctor and neurologist to come up with diff types of medications and to be honest I think I’ve tried everything it doesn’t go away albeit  I do have good results when starting a new med but wears of in time, I’ve hade mirapex ropinorole gabapentine benzodiazepines OxyContin you name it I’ve tried it nights are just unbearable at times even with high strength sleeping pills I’m sleep deprived.

So is there something I’m missing that I should be trying that others have had success with any help or info would be great thank you all

0 likes, 12 replies

12 Replies

  • sharon67835
    sharon67835 frankiej79

    Posted

    Hi Frankie

    I know the feeling I take ropinerol which at the moment works ok however I have in the past had premipexol but I also take codeine along side my Orpington which my neurologist suggested most Dr's don't like prescribing it but it is on the list for ems but you need to take it along side your other medication for rls,I also find a small glass of tonic water at bedtime helps.

    I hope this is of help

    All the best

    Sharon

    • frankiej79
      frankiej79 sharon67835

      Posted

      Hi Sharon what is Orpington ? I’ve not come across this for relief, the best relief I had so far was with  premipexol but had many side effects on me 
    • sharon67835
      sharon67835 frankiej79

      Posted

      Hi Frankie

      Sorry that was meant to be codeine its my I pad it tends to make up words if it doesn't recognise what I'm typing,so sorry,

      Regards

      Sharon

  • martin45332
    martin45332 frankiej79

    Posted

    I am new in the RLS world but, even though I have Neupro patches and Gabapentin, I have found Tramulief the best at controlling the legs. 
    • Boomiesmom
      Boomiesmom martin45332

      Posted

      Watch out for headaches from the Neupro patch.  Worked well for me but progressive headaches were so bad I thought I was having stroke.  Gabapentin/neurotin at higher dosage can cause mild to severe psychological side affects.  I know of several cases of this happening - paranoia, inability to concentrate, unable to speak clearly.  Works great for some people but luckily someone made me aware of her side affects so when it began to happen I knew what the problem was and went straight to my neurologist.  What is Tramulief - have never heard of it.  Seems all of us end up with cocktails of various meds to control RLS as best we can.  Right now small amount of Requip - .25 along with Robaxin a muscle relaxant and Norco - pain killer.  Seem to be working the best for me.  I've augmented on Requip in the past - had to go off for a few weeks - thus the Gabapentin - back on Requip after Gabapentin at 700 mg made me a real head case.  So as I said, we all find cocktails that we hope work for us and there doesn't seem to be any one treatment that is effective for everyone unfortunately.

    • martin45332
      martin45332 Boomiesmom

      Posted

      Thanks. I suppose for each person the quest is to find what works for them. I am aware of memory impairment and the prime suspect is Gabapentin. This works well for the pain I have which is either RLS or Small Fibre Neuropathy. The rather crude trade off is memory or pain!

      Tramulief is long lasting Tramadol. I learned by stopping it for a short while that it really helps ie with it no movement but without it quite violent movement.

  • laura08958
    laura08958 frankiej79

    Posted

    Frankie

    Your post could have been written by me. I've suffered with this since my late 30's and I'm now 64. As predicted by my doctor years ago, it gets worse with age. But I'm hopeful that there will be a discovery for relief. And I'm thankful for sites like this where we can feel "support" from those that understand. Like you, I've run the gamut of medications. The worst Med for me was Mirapex, which worked great for a couple of years until I started having daytime symptoms (augmentation). And weaning off of that one was something I never want to repeat again.

    Lyrica has been a Godsend for me.  (It also helps me with arthritis pain). But Lyrica doesn't help me sleep at all. I take Temazapam to be able to get to sleep and then up until recently would take a combination of ibuprophen and Tylenol 3 to get back to sleep after the jerking and nasty feelings subsided. I am now taking CBD and it is helping ease my nighttime symptoms and also helping me go back to sleep. It might be worthwhile for you to check it out. Blessings! 

    • frankiej79
      frankiej79 laura08958

      Posted

      Hey Laura I’ve had this since late 20s im now 39 it was only 8/9 years ago I got actual medication for it at first i was told drink more milk more iron in diet and excercise not many doctors are very understanding of rls but I was on mirapex first for 5 years it was instant relief but it had side effects both physically and mentally and as instructed by my neurologist to come of them it can ruin lives he said so we went to lyrica it had no effect on me had awful nausea with them so went on ropinorole 3mg a day seemed to work for about a year and started to flair up again so added gabapentine 900mg and upped it to 1800mg as of now, it’s seems to work most of time but I do have some unbearable nights. I have experimented with opioids for relief but they have devastating side effects so for now I’ll persist with the ropinorole and hope all goes well
  • valda23668
    valda23668 frankiej79

    Posted

    Hi Frankie   I take low dose of SIFROL which works well for me, take it about 2 hrs before I go to bed.   Most nights sleep right through.   It has side effects which I have not suffered to date but it is worth a try.
    • frankiej79
      frankiej79 valda23668

      Posted

      Hey valda I’ve had pramapexole which is pretty much same as sifrol it was my first ever treatment for RLS was on that for 5 yrs with great results but it did have side effects mentally and physically so had to come of them, been pretty much experimenting on what’s best for me.

      Very frustrating at minute I’m on the ropinorole 3 mg a day with 1800mg of gabapentine I do have some very bad nights it works 80% of the time but for now I’ll stick with them and hope it works 

  • Guest
    Guest frankiej79

    Posted

    I have suffered with RLS for a number of years. Over this time I have tried many so called fixes and the only drug that made any impact was Ropinarole. However the relief declined over time and the side effects were very unpleasant.

    I do nut use prescribed drugs any more but rely on taking a stone cold shower just before bedtime and sometimes, if I am being kept awake by RLS symptoms, once or twice during the night. The relief I get enables me to drop back into sleep without too much trouble. I also take a B12 pill and rub Dr. Organic Leg and Vein cream into my legs before bed.

    This  formula works for me most of the time but sometimes it doesnt and I just have to tough it out until the RLS settles down again.  

  • kathy00483
    kathy00483 frankiej79

    Posted

    2 most effective things for me, soaking in a hot bath and using a bean bag as follows:  I make my bean bags with flannel and the cover with fleece.  8 inches by 20 inches, fill with approximately 6 cups of winter red hard wheat berries (so when laying flat about 1 inch high).  Heat in microwave for 2-3 minutes, take out and move around to mix wheat berries, and heat another 2-3 minutes.  Lie in bed face down with rear end up (looking cute:-), and bag at back of knees, between both legs, touching thighs and calfs.  Instant relief.  The wheat berries will stay warm for up to 30 minutes. Adjust legs to what is comfortable over time. 
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