RLS. Please help. My husband is suffering really badly with rls

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He has taken everything from rotigotine patches 1 to 3 mg. Ropinirole. Tramodol cocodamol. Amitriptyline and other drugs with no relief at all. We have tried everything I can think of so any help would be greatly appreciated

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  • Posted

    I am taking klopin also known as clonazapam it's a benzopine that is used for restless leg syndrome.  It's a tranqueli

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    • Posted

      I wanted to say it a tranquilizer and addictive so most dr refuse to give a script for it but some dr are pretty good about it and might try him on it for relief if he has not tried it before.
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    • Posted

      Be careful

      I know someone who apparently became addicted to benzopene and it ruined the last 5 years of his life.   I dont think he ever allowed himself to believe he was addicted because he thought the alternative was a return to walking the house all night to control his RLS.  Instead he was able to stay unconscious through his RLS but never had a good nights sleep and was tired and sleepy all day.   

      A "pretty good" doctor continued to prescribe it for him.

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    • Posted

      I've been on two 0.5mg clonazepam at night for 16 years now for my chronic rls. i was on two 2mg but gradually weaned myself down to the 0.5mg. Yes I'm addicted to them but I get a good night's sleep, feel fine next day and manage to walk 6 miles and live a normal life. Occasionally like tonight I wake up with symptoms and take one codeine tablet which gets me back to sleep. I also suffer chronic back pain and my physiotherapist says I have abnormally tight ham string muscles. I sometimes wonder if all this is connected. The pain is in my buttocks too. I have never found an alternative to clonazepam that works for me. You have to weigh things up. I'm 64 by the way and my rls started 25 years ago. As it got gradually worse it was ruining my life until my gp prescribed clonazepam. I'd say give it a try if nothing else works. Good luck to everyone with this horrible condition.

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    • Posted

      I've been on clonazepam 1 mg at night for at least 10 years, I'm 58. I'm also on oxycontin 20 mg that I can take up to 3 times a day.  I'm prescribed the clonazepam 2 times daily.  If I don't need my pain medications (scoliosis and severe back and neck pain) then I don't take them.  I start first with Ibuprofen 600mg if I feel the back pain coming on.  If that doesn't last for at least 2 hours, I'll take an oxycontin.  I usually take only 1/2 of my 1mg clonazepam at night.  I also have Ambien 10 mg and that's probably the only one that I am probably addicted to.  I try taking half but sometimes I think I'm taking a placebo - you know, stolen at some point and replaced with a look-a-like tablet.  When I have pain severe enough to have to take the maximum prescribed medication, I'll schedule a nerve block for my back.  I'm currently getting 6 - 8 weeks of relief from the injections (I do them without sedation).  I can then decrease all of my medications for the 6 - 8 weeks until I usually need another series of injections, including burning the nerves every 10 months.  All this to prevent having any further surgery on my spine, but if I live long enough, I'll have to cave in and have more surgery.  As patients we all have to take responsibility for the medications we are prescribed.  Learn everything you can about the half life, the peak of relief, the side effects and you don't HAVE to take a narcotic if an over the counter medication works for you some days.  I'm reading and noticing that RLS sufferers are getting relief from narcotics, like codeine.  My relief comes from oxycontin (lasts 12 hours).  I do believe this is a hereditary condition as my 38 year old son has it.  He's 6'5" tall, his wife is 5'4" tall.  They can't sleep together it's so bad.  He's whacked her with his legs flying about so he's relegated to the sofa sad  

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    • Posted

      Your comment about narcotics struck a chord.  I am currently prescribed ropinirol and can vary my dosage upto 4mg without referring back to my gp.

      I can also take codeine up to 60mg for the pain from rls and have noticed that Ican be twitch free on occasions after taking codeine only so I will mention this to my gp. 

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  • Posted

    The only thing that helps me at night so that I can get some sleep is called Flexall.  Flexall is for sore muscles , arthritis, that kind of thing..  I was going crazy one night because I was so miserable, so I went into the medicine cabinet and found the Flexall and just for the heck of it I rubbed it all over my legs.. It stopped my jumpy legs.  I was very surprised.  I am not saying it will work for your husband but it sure worked for me.  I bought mine at the drugstore at first.  It is hard to find .. so my husband orders it on line.  I just got a package of about 10, that he ordered.  Give it a try... it won't hurt him and possibly it will work for him... I feel for him and anyone else with this problem.. It is terrible and so hard to explain to anyone if they don't have it.

    Good Luck and God Bless

    Judy

     

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  • Posted

    It is possible that RLS is related to food.

    I recomend that you give the Monash University FODMAP diet a try.   It woulks for some.   It may not give full relief but it might help.  It costs nothing, doesnt risk side effects of drugs and is probably long term ion its effects.   Just search this forum and you will find plenty about it.

    Feel free to PM me or reply through this forum.

    It has helped me a lot and I only add a dose of ferrous di-glycinate at night which I think helps a bit as well.

    Graham

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