New to forum, but hated Channel 5 programme

Just joined after being desperately disappointed by Channel 5 programme. Had RLS & PLMD since age 17; now 64 I've recently started down the medication route with pramipexol but really worried this will eventually make things worse. I was hoping for an informative programme about RLS, potential treatments, latest research etc. All I got was sensationalised stories and absolutely no information whatsoever. is there anyone out there for whom medication has been successful?

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  • agree the programme had no uplifting info, for us sufferers, and the director of RLS charity, he made it seem useless, and saying she has to learn to deal with it, he obviously has never felt it (like saying that Parkinsons sufferers have to learn to deal with it) I was on Prampexole and went into augmentation (6 a day way too much) have cut it down to 2 a day, with the help of 2 Dihydrocodeine (got it from this forum, as I do all the things that have turned me around) and A Zopiclone at night. I have brilliant sleep, and very little daytime attacks. RLS sufferers should be prescribed Opiates, I downloaded from a specialist site and showed my doctor

  • I agree too it gave us what we already know I was looking for info on how to ease it .I was disgusted with the person saying she would have to learn to live with ,well he may be the director of RLS but he has no conception of what it's really like to live with it .How night after night we are up walking the floor in pain ,distress and this happens when we try to relax and when mine is bad it's everywhere in my body ..I could go on but I will spare you .Have a good day .xx

  • I was totally disappointed with that program which gave no positive information at all. I have suffered with rls for 25 years and currently get it every every evening and night. This is mainly due lately to Lansoprasole and Ranitidine prescribed for acid reflux. Before that extreme tiredness, being on my feet for long periods or no walking during the day triggered it. I find cutting out caffeine and keeping alcohol limited to treats helps. Chocolate of course has caffeine so that's not good. I've starting taking extra iron and magnesium which I think helps a bit. As a last resort I take zopiclone or clonazepam. My doc prevailed these to counter the effects of Lansoprazole which make my rls unbearable, but I avoid using them unless desperate because they make me so dopey next day. They do work for me though. I can sleep well on half the dose.

  • Hi and welcome.

    Pramipexol is a good first line med for rls , despite its bad press.

    Main thing is to start low- .088 dose for a few days and go up by that amount every week untill you get to .25.

    If you get to a point at which you are getting reasonable relief - stay at that and check your environment for triggers- well documented on this site.

    Also look at ferritin levels and supplemental iron ( fer bisglycinate on empty stomach at night with orange juice)

    If you get to .25 dose and are still getting bad rls- then try 2 to 300mg of magnesium at night . After that you could look to supplementing with Gabapentin- starting at 300mg in the evening. Don't take magnesium at the same time.

    I think you have enough to think about there for now!

    Good luck.

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