Hello all

Hiya

Just wanted to write a quick post to introduce myself

I suffer RLS along with fibromyalgia and was diagnosed about 3 years ago

At the moment I'm not on any medication for RLS although the pain clinic I attend has suggested I asked my GP for help she says there isn't a lot she can do and advised I drank tonic water which I have tried and the only affect it has had is to make me need to get up in the night for a trip to the toilet ( I know, too much info, sorry)

Anyway it's nice to find some people who understand that RLS isn't just a joke as a friend of nine seemed to think

11 Replies

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  • Hi, tonic water doesnt work for RLS, it was suggested to you as people seem to think the quinine in the tonic water will help with RLS and it doesnt. So your best bet is to see your doctor to get some proper meds for RLS. Also ask your doctor to do a ferritin level test to see what your level reads. For people with RLS is should read 50-100, below that and you MIGHT benefit from taking iron pills from your doctor. Iron pills do not work to help RLS for everyone. Are you suffering everynight with RLS, keeping you from sleeping..?

  • Hi Jeanlizzie, my research has shown that quinine (which is in some tonic waters but not others) is what's called a "quinolone." There are other substances besides quinine that are quinolones, just the way there are numerous antioxidants ie vitamin c, vitamin e, even coffee has antioxidant properties. Anyways, quinolones are powerful "dopamine agonists" and researchers use quinolone frequently when conducting experiments that require such. Mirapex, a common RLS drug, is also a "dopamine agonist." There's an anti-psychotic med in US called "Abilify" whose active ingredient is quinolone and there is anecdotal evidence that it helps RLS too. I haven't found any other medications that contain quinolone but I'm sure they're out there.

    There's one man on this forum that gets relief from drinking a litre of tonic water everyday. Not something I would do, but I do not fault him. Desperate times call for desperate measures. It sounds like you have NOT had RLS your entire life. So I would try to think back to when your RLS started and see if something changed at that time, such as a new medication. Antacids, antihistamines and antidepressants (to name a few) can trigger RLS.

  • All I can say is go to your doc tomorrow my sister in law of 47yrs says never herd of it so I know your friend will not understand. As you will read on this site there are many different tabs to take ,so go and get some help don't think about it do it you will feel so much better tonic water is not the answer nor quineen spelt wrong good luck and let us know how you get on

  • Hi Jeanlizzie, if you need information before you visit your doctor, do go to the new RLS-UK website at rls-uk.org. There's a lot of information about meds as well as exercises and possible food triggers. Hope you are able to get things under control!

  • I think Iv got Fibgnomyilgy too as well as RLS Did you get this both at once or one after the other

  • Hiya

    I was diagnosed with both fibro and RLS by a pain specialist at the same time and then a few weeks after I had started treatment for the fibro the RLS seemed to worsen, but I was told that they both go hand in hand along with CFS ,bladder problems and depression

    I wish you luck and any thing I can do to help just give me a shout

    X

  • Hi again. That begs the question of what treatment/meds you started to treat the Fibro?

  • I am taking 300mg of gabapentin 3 times a day, 70mg of zomorph modified release 2 times a day,, 20mg amitriptyline at night and oramorph if and when needed

  • If your RLS is worse, then probably because of the amitriptyline, an anti-depressant that can make RLS worse for most people with RLS. This website rlshelp.org on the treatment page is a list of meds to avoid which can make RLS worse.

  • ive read somewhere that somone was drinking tonic water every night and it gave them a heart attack so be carefull drinking tonic water may not be such a good idea. you should really go and see your docter but when you go take some resurch notes with you about rls as the docters are not verry knowlable with the contition or just cant understand it.

  • hear is the link that i read about tonic water not being good! facebook.com/JohnTesh/p...

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