RLS

Beginning of December 2014 diagnosed with RLS Prescribed Mirapexin (praximole 0.88mg)

Took the med 2-3 hours before bed time at 9 pm.

Meds 'switched' off at 4 in the morning. Wide awake so got up for the day.

Now take meds at 11 pm sleep soundly until between 8-9 am.

Have followed the useful tips on how to live with RLS.

Coffee and tea definitely a trigger. Now use caffeine free.

Don't smoke or drink alcohol.

Relatively fit and active and not overweight.

CURRENT AWARENESS.

Watching TV after evening meal, curled up on the sofa, suffered with severe painful RLS. Rested legs on footstool, ie coffee table, no relief.

Took codeine, walked bare feet on cold kitchen floor. Relief at last.

My possible SOLUTION

Sit on the settee straight, feet on the floor.

Don't cross my legs when working at my desk.

I would welcome any other suggestion for my 'after dinner' RLS discomfort.

ps. I fractured my spine when I was teenager. No problems, but odd twinges if I am not sitting correctly. Physio gave me exercises to strengthen my back muscles. Could this have possibly been a contributory factor to RLS?

11 Replies

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  • I too have had a very similar experience as you. If I take my pramipexole too early I wake up too early, take it later & sleep through.

    I am on the lowest possible dose & won't go higher or take any during the day having learnt my lesson with Ropinerole. GP kept upping the dose & I had terrible augmentation & it was hell coming off it too.

    Yes, those early evening symptoms are unpleasant. At the first twinge I get up & do something active in the kitchen, then sit again..KNITTING amazingly helps me if I want to watch TV. The minute I stop, symptoms, minute I start, they disappear. The secret is not to let the symptoms take a hold of you, MOVE before they get worse & as you say avoid all the triggers. The other helpful thing if you want to keep watching a programme is to stand up immediately you get the first twinge & do some stretching of your neck, arms & shoulders. I am like a yo, yo. Up, down, knit, knit, stretch, etc but anything to stay off an earlier dose & to have something that works at night.

    I am sure anything that affects the nervous system must be a contributing factor to RLS.

    Codeine & cold floors also work well for me :-) but prefer to use it as little as possible..a real life saver when I travel etc

  • There is a prolonged release version of Mirapex that lasts 24 hours - hurray only 1 tablet per day. I often have a few RLS twinges in the evenings but nothing like it would be without the Mirapex.

  • I'm afraid I can't help with suggestions for relieving your RLS. I was born with the condition and so have suffered all my life, and I certainly didn't smoke or drink alcohol or caffeine when I was a child but still suffered. I find putting my feet up on a footstool is more likely to set RLS off rather than prevent it. People say a warm bath helps, but I've never found it makes any difference. Either I'm going to get RLS or I'm not, and I've never noticed a pattern of anything triggering it off, except my own monthly cycle. It has always been far worse during the week before my period is due, the same week when I would also suffer from PMT, and my doctor wasn't surprised when I told him this.

    However, I'm interested in what you say about your spine. I've noticed recently that when RLS is coming on the sensations definitely seem to be originating in the base of my spine, so maybe there is a connection and the spine somehow plays a part in this horrible condition.

  • Yes there does seem to be some spinal connection. A vast number of RLS sufferers also have spinal problems or /and have had spinal surgery myself included. I have in other groups come across cases of people who experience their very first RLS symptoms after spinal surgery.

  • Hi, Night Owl.

    Keeping caffeine free is VERY important:

    Remember that even decaffeinated tea/coffee contains up to 4% caffeine...except Rooibos (Redbush) tea...which is naturally caffeine free.

    Also CHOCOLATE and cocoa contain caffeine, too.

  • Hi Nemesis

    Caffeine definitely makes my RLS unbearable.

    Have been experimenting on the 'triggers'

    Redbush, and other Herbal tea is ok. Chocolate ok. (diabetic so only have 2 squares on Friday night treat, as with ice cream) No cigarettes or alcohol anyway.

    Now experimenting with my sitting position when watching tv at night.

    Curled up on comfy settee triggers RLS. Sitting with feet on floor, back upright, but lower spine sags into cushion on settee. (fractured spine when I was young)

    Solution so far is that I immediately sit on a hard chair, upright, feet on floor. Relief.

    Will post result.

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  • Caffeine doesnt make everyone's RLS worse, its an individual thing, as is alcohol, chocolate, ice cream. Its all a matter of trying to leave them out of your diet to see if that makes any difference.

  • Hi Elisse ,isn't good folks are writing in as it went so quiet,I havnt. Had a drink for three months and I can tell you sweet things do start my legs off ,I don't care what I have to do I will do it to have a normal life ,when you think of the years of not sitting down in the eve and may be if lucky 2hrs sleep in the night ,not going on long car journeys ,not going to the cinema or a play hope I havnt spoken to soon ,sweet dreams to you all x

  • Hi Beady, how are you doing now on the Tramadol...? Groups can go very quiet sometimes, then they get lively again. I can drink caffeine, eat ice cream or sugary food and those dont have any affect on my RLS. Only maybe alcohol is the one that might be a trigger for me. Otherwise, i havent noticed anything else which is a trigger. x

  • Caffeine definitely makes my RLS unbearable.

    Have been experimenting on the 'triggers'

    Herbal tea is ok. Chocolate ok. (diabetic so only have 2 squares on Friday night treat, as with ice cream) No cigarettes or alcohol anyway.

    Now experimenting with my sitting position when watching tv at night.

    Curled up on comfy settee triggers RLS. Sitting with feet on floor, back upright, but lower spine sags into cushion on settee. (fractured spine when I was young)

    Solution so far is that I immediately sit on a hard chair, upright, feet on floor. Relief.

  • My sister started to eat crackers and it trigered rls with her now she stoped taking them she has no rls so i gess you should look at what you eat and experiment a number of things can triger it everyone is different and if its the inheried rls well youll probable find it harder to stop it tringering no matter what u eat but try and let me know.

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