RLS OR NOT

Hi everyone I have not been confirmed as having RLS 1 doctor even said its not a real illness. My trouble always starts when I go to bed cant keep my feet or legs still and so not to keep my wife awake I go back down stairs where I will often punch my legs as hard as I can and still waking my wife as she can hear me from the bedroom I kick the sofa or lay on the floor and hit my ankle bone on the wooden floor, kick the wall I have poured boiling water on my legs and ice cold water, I try walking in and out of the kitchen and living room this can go on for 3 or 4 nights in a row with no sleep at all I'm so desperate to sleep I end up crying then having several large glasses of scotch to try and sleep. I have also just seen this on TV and I am suffering from short term memory loss I was even tested for Alzheimer's that is also driving me nuts so what do you all think am I nuts !!!!!!!!

8 Replies

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  • Your Dr is an incompetent buffoon, (buffoon spelled c**t) and should be told so! (s)he is going against the grain with NICE and many other medical practitioners. a complete dick!

    With regards to RLS - does moving ease it? There is good info here:

    rls-uk.org/what-is-rls/

    Seek another Dr, most are crap when it comes to RLS and with that dick refusing to see it as an illness proves they are incompetent and best avoided.

  • This is all very familiar. I hope your wife is as tolerant as mine...

    I think most doctors are now pretty good at recognising RLS, even if they aren't so strong on treatment, so you shouldn't have to look far to find a GP who will at least try to help. Medication can do much to improve your quality of life, but look online at the various "lifestyle" things people have tried if you want to do something straightaway. An easy start is to cut alcohol, caffeine and sugar.

    I know it's tough, but I would also say avoid being too aggressive with hitting your legs. Once you get into that you're inclined to hurt yourself enough to fully mask the sensations, but you actually want to find a compromise between distraction and not risking further damage / bruising. Get sleep wherever and whenever you can, including during the day, even if you know that the RLS will wake you up an hour or so later.

    Get that medication though. I'm on ropinirole, which works well for me.

  • CHANGE YOU DOCTOR, HE IS SO ILL INFORMED, ALCOHOL WILL EXACERBATE THE RLS. FIND SOLUTIONS ON THIS SITE, AND GET A NEW DOCTOR. HOPE YOU GET THE HELP YOU DESPERATELY NEED

  • Get a new GP pronto. Lots of meds that can help. a combo of Lyrica and Tramadol are helping me at the moment although a low dose of Ropinerol helped for 15 years.

    Buy one or both of these books and arm yourself with the information to take to your NEW GP --- Restless Legs Syndrome: Coping with Your Sleepless Nights (American Academy of Neurology by Mark J. Buchfuhrer MD (Author), Wayne A. Hening "MD PhD" (Author), Clete A. Kushida MD (Author )

    or

    Clinical Management of Restless Legs Syndrome 2nd Editionby Hochang B. Lee (Author), Mark J. Buchfuhrer (Author), Richard Allen (Author)

    1st book more for the sufferer and 2nd for medical professionals but both extremely useful . I have both. You can get them second hand cheaply on Amazon.

    Good Luck

  • You don't say if you are on any medications of any kind.?

    There are plenty of options- check out 'rlshelp.org' for a progressive list of them.

    Also avoid triggers- alcohol is the obvious one- but there are many others. If you look back on your history you will notice episodes are coincident with intakes.

    Keep in touch.

  • Oh you poor poor soul. Please go to the RLS-UK website click on this page rls-uk.org/professional-res... and then go through all the downloadable resources then click on RLS Severity Scale, print it off and complete the form then take it to your GP. When I first went to my GP after finding what had been plaguing me for 5 years had a whole raft of printed off material for my GP to read through (he must love me!). Then ask for a referral to Prof.Ray Chaudhuri at Kings College London. HE will be able to give you a diagnosis and start you on a course of treatment. But before you do even that please check out all the drugs that make RLS absolutely terrible and also start taking a very high dose of vitamin B12 (I say this because vitamin B12 is water soluble anything you don't need will be excreted in your pee, but if your levels are low then it too will make your legs drive you crazy). I have inherited a painful variant of RLS from my father and recently my B12 became very low and despite my drugs working perfectly well for two years my RLS broke through and it was hell. Also click on this link rls-uk.org/treatment/. and then go through the list of medications to avoid. You may well find that you've been prescribed medications that are making your RLS (and that IS what you've got by the way) much much worse. I have inherited the painful variant of this disease from my father and now take Targinact (an opiate) and Pregabalin and they work brilliantly unless I get B12 deficient ! Have hope dear man, you DO have RLS and now you just need to find the treatment that will help you live with it. Also, ask for a blood test to check if your iron levels are low because that will make it worse too. Good luck Heli-Man

  • You will find people here who understand. I was told by my husband after separating that "at last he could sleep without being kicked, and that I moved every 4 seconds" Of course I often had to get up and walk around. Now I sleep alone ( but I am still restless in bed and only sleep intermittently) and take Pramipexole and oxycodone which controls the worst of the RLS. it's awful when you feel so tired but cannot lie down and rest. I wish you success soon in finding the drugs to help you.

  • Tempting though it is, I would avoid the scotch as alcohol is an exacerbant for almost all RLS sufferers. Do you find your symptoms are reduced when you move about? That is typical of RLS - movement temporarily relieves symptoms. It may respond to co-codomol - you could try that. Some people also get relief from a series of stretching exercises and from lying with their legs elevated against a wall. Hot and/or cold baths, particularly with epsom salts, can also be useful.

    The most important thing is to get your serum ferritin levels checked - it is a blood test that a GP (even your useless GP) should be able to do. US RLS experts recommend getting levels to above 100 for RLS sufferers. Many find that raising iron levels has a very beneficial impact on symptoms.

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