.I am looking for clarification on a number of things to do with RLS and if it's possible to get answers I would be over the moon!!

I am 72 and I inherited RLS from my mother (who died several years ago) I feel guilty that I was not at all sympathetic when she used to pace around the room. Now as a sufferer, I realise what she was going through.I am taking Pramipexole and Co Codomol to try and control my RLS but these are becomming less effective with time. If possible I would like clarification on the following.

a) Should I reduce my salt intake? b) Should I avoid alcohol? c) Are there foods that I should avoid? d) Does drinking a large glass of water make Pramepexole work more effectively. e) Is light excercise ie gentle walk advisable before going to bed?

This is the first time I have submitted a question(s) so I hope the system does'nt crash

Regards Greenacre

8 Replies

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  • Hello Greenacre, welcome to our community. Whilst I am a trustee of the Charity, I do not profess to hold ALL of the answers to your questions, but I can certainly help in a few of them! :D

    Reduced Salt Intake: I do believe it is recommended to reduce our salt intake as RLS sufferers, but we are all different so this may have no effect on your symptoms?

    Avoid Alcohol: I am completely tee total and never ever drink alcohol; personal choice not RLS related; however I still have problems at night. Some people on here can't touch red wine or Port as this exacerbates their symptoms and as such have completely eliminated it from their lives with good effects. So, this may be a wise move to make? ;)

    Water with meds: I am fortunate enough to not have to take medication (YET!) for my RLS, so I will have to pass that on for one of either the other trustees, or one of our community who have a vast amount of knowledge re: meds. :)

    Exercise: Again, some people swear by it, some people say it makes no difference - this may be another lifestyle change to play around with over the next few weeks. :)

    One thing for sure with RLS, what works for one person does not always work for another and this you will become aware of all too soon. What we strive to do on here is support you when you need it, and be the listening ear when you feel that no one hears you. We have a vibrant community with bloggers from all over the world with a lot of RLS experience. ;)

    I am sorry my answers are limited, but i didn't want to ignore your post, i hope i have been of some use? :)

    Personally, I find cold temperatures as cold as possible are the best for my RLS, but even then when it gets too bad, not even that helps me. :(

    I hope we can help you Greenacre, and welcome aboard once again :)

    Regards

    Ellie

  • Hi I have tryeda lot of different things and I found nothing I did worked and I still haven't found anything that helps but don't give up things witch. Don't work for some people may. Work on you best of luck .

  • HI, Ellie did a good job, and I can add some things. :)

    Exercise- not too close to bedtime, if your legs are quiet, you want to keep them quiet if you can for a couple for hrs before bed. Too much exercise can keep our busy legs and arms busier.

    Alcohol-DO AVOID alcohol has been proven in studies to shut down the part of your brain that produces dopamine, which is thought to be one cause of RLS-dopamine shortage

    rlshelp.org is the BEST web site for "DRUGS AND FOODS TO AVOID" on the treatment page.

    Many prescription meds and over the counter meds can make RLS worse.

    SALT- there is no evidence that the "no salt miracle cure" diet works at all. It was looked at by the RLS Foundation years ago, along Dr. Wayne Hening (may he rest in peace) who is an RLS expert. We were debunking Marie Goodwin's No Salt Cure for RLS. It is a load of rubbish that will just deprove you of 30 bucks/. Dr. Hening was an RLs expert, and he wrote an article for the Foundation's (US) newsletter about her and her fake cure

    OTHER THINGS TO AVOID- any web site that say they can cure your RLS, and will provide the "miraculous answer" for a fee. :)

    DO ask a lot of questons. Kind of quiet here today, but it is usually very busy.

    And, remember that you will hear all kinds of crazy things, even from people on here :) Trust your gut, and if it sunds too good to be true, it probably is. No one thing works for everyone, so you will see and get a lot of ideas.

    Donna/USA

  • The instructions on my bottle of Pramepexole say to drink one

    full glass of water with the medicine. The pharmasist said

    that it will help the medicine to work better. (Take or leave it. ) haha.

    My neurologist suggested for me to take away salt for 3 reasons..

    a) Keeps blood pressure down

    b) Keeps my body working better, won't retain water, controls my vertigo

    c) I'm on a couple different meds..salt isn't needed, not recommended..

    I wasn't told that it would help my legs to settle down..

    You would be surprised to know where salt is hiding in prepared foods..

    I walk right after dinner, not very close to my bedtime. It does a body

    good to get outside and to do some kind of excercise but I'm not

    sure if it's helpful for RLS...for me, the verdict is out..doesn't seem

    to matter if I do walk or not...if I have a bad night, I do no matter..

    My guess is that you are doing a lot of things right at age 72...

    but check with your doctor about excercise and let the doctor

    know what you tried and it didn't work or if it did work..even if

    it's less effective now..You might get to change up medcines

    or increase some? Hopefully you will have the right doctor

    to help you find a good solution..Keep bugging the doctor

    until you get relief..(I did, finally)

    Good words to use to the doctor: I can not live this way, my symptoms

    are not acceptable,if you can't fix this, can

    you please refer me to someone who specializes in RLS..

    Karen ~ USA

  • Thank you very much for this answer to Greenacre it has given me some very helpful information in the process. I too suffer from Vertigo and high blood pressure and i know cutting salt helps with the BP but was unaware that it did so with Vertigo. I find if i am on my feet a lot or do a lot of walking about regardless of time of day my legs do suffer for it. Many thanks again.

  • Hi, Thank you all for your responses, they are very helpful. No more red wine!. I had a bad night and took an extra Pramipexole so this morning I'm feeling "zonked out" I will start to feel nornal (whatever that is) around 8pm tonight which gives me 3hours before hitting the tablets again. O for a night of restful sleep.The patches may be worth a try. Can anyone tell me if there are any limitations using these if you are taking medications for other health problems? ie Blood Pressure, Atrial Fibrillation etc

  • Greenacre..funny.. haha.

    yep, zonk to zonk !

  • @cfall comment. You will see entries throughout this blog. I have good news for those in the US and tell folks from the UK, you will need to wait.

    The Relaxis Pad has saved me. I no longer have RLS that bothered me for years. Research has shown that RL is do to an over active thalamus. The pad retrains it. Once I got off the horrible Rx it took less than a week to have the RL go away. Ask your doctor or you call the Relaxis Pad company and learn about the pad. Yes it was expensive but a small price to pay for restful legs and a good night sleep.

    Good luck with your surgery. Claudine

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