RLS Any tips other than medication?

Hi im Rachy, age 37 , I have two beutiful children and a wonderful hubby , I suffer with an undiagnosed neurological condition,I have neurogenic bladder and self cathetorise, also right side weakness and drop foot , I use crutches to get around and an AFO brace on foot..Recently I have been unable to get any sleep, I have a horrid crawling sensation in both legs till the point where ive scratched the skin away :'( plus spasms and cramps, Now it happens during the daytime too .. I feel really tierd and have been house bound for the last 3 weeks as the medication is making me spaced out , I joined to see if I can get some help with my RLS as its driving me insane, thanks in advance :-)

Rachy x

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  • meds im taking for my neurological condition

    baclofen, gabapentin, tramadol, diazepam.

    for RLS:

    clonazepam, quinine ?

  • I know taking quinine will NOT help the RLS. clonazepam, is one that a few on here take for RLS. Not one i have tried, as i know it has a long life and i know i would have trouble staying awake during the day if i took it.

    For severe RLS, there isnt anything else which works really, apart from taking meds for it.

    Maybe change the clonazepam for a different RLS med might be the answer.

    Most of those meds you are taking for your neurological condition will make you spaced out during the day. Why is it undiagnosed, if they dont know what it is, wondering why you are taking those meds. Just asking...

  • I'm not going to advise on meds cos I know nothing ....I just take co codamol for the rls...it works as long as I don't use it too often....I DO NOT want to go on the rls meds until there is no other choice. Just wanted to say hi and welcome!

  • Thankyou Elisse and thedragon for the welcome :-)

    Elisse .. I am undergoing tests .. The neuro knows where the nerve damage is but unsure what caused it as I was fit and healthy until 3 yrs ago .. They suspect MS so they are treating each symptom (nightmare) but apparently even if they diagnose me I will be on the same medication anyway :( I take the lowest dose possible when I am at my best .. but when I am having days like today I up my meds .. I am awaiting an appointment with neuro as I have not seen him in a year! damn waiting lists ... but my GP is concerned and has written to him to try and see me asap :-)

    I will go back to GP tomorrow as your not the first to say about the quinine .I have heard bad things about it .. Thanks for the advice much appreciated .

    thedragon again thankyou for the warm welcome and advice :-)

    Rachy

  • I didnt mean to pry, so hope you didnt think i was... I dont know anything about MS so i dont know the meds they give you for that,, until you have just said above.

    Good luck at your doctors tomorrow. Keep us posted... :)

  • Hi Rachy ,did they do usual tests for MS , lumbar puncture and MRI scans?, I had suspected MS 11 yrs ago and after lumber puncture they told me i had MS , then they done MRI scan and then tell me i dont have lesions on brain that are usually present with MS but that i had lesion on spine.but still not sure to what i had. At this particular time i could hardly walk due to numbness in legs and going up as far as my waist . I was put on amytriptyline and a course of steroids, but 11 yrs down the line still have trouble in legs and severe RLS and never had true diagnoses ,find it all so frustrating. Well at this moment and time Rachy i am on Pramipexole 0.088mg and take 4 of them a day and as lately i have discovered if i take 2 co codamol 30-500 about an hour before bed i can get a good nights sleep. I think you should push them for proper diagnoses and not to give you meds when they cant tell you what you have wrong with you , all the best Rachy

  • Hi Fatima .. I am so sorry I must have missed this reply ..

    Yes I had the dreaded LP and 3 MRI scans .. they didnt find nothing in LP but found what they called scaring and nerve damage on spine.. also wear and tear?? They said they have to rule out everything before diagnosing MS ..Also told me it could have been a virus that attacked spine? I dont believe that as I had 2 attacks in a year one to bladder and one to right side leg and arm.. also had bells palsey? I thought I had a stroke but they didnt agree ? but that was 2 years ago.. and had not one test since?? I give up and just tried to live as best I can with my condition..praying it dont get worse.. I really feel for you as its like a ticking bomb! 11 years is a long time not knowing :'( ...they told me to contact them when I get new symptoms haha great thanks! x

    Rachy x

  • Elise not at all hun :-)

    Romany53 , Thankyou so much for taking time to help too , I have been reading up on quinine and it dont sound good, I will ask my GP in the morning about mirapexin , I have read up on it and it sounds promising :-)

    Awww your all so kind , its actually put my mind at ease to talk to people who understand .

    Rachy :-)

  • Hi, i take the prolonged release mirapexin also, great for me :)

  • Thankyou Tallula :-) much appreciated x

  • Dearest Rachy

    You have all my sympathy . I recognise most of the challenges you face there. I have been wake this night. To pass the time I have audiobooks and some knitting as well as my iPad.

    I have been through all the medicine spectrum.

    I have found out that heat helps. I bought in IKEA padded socks/shoes called Margaretha to wear during the night in bed my feet are warm and not so restless. I also warm my bed with electrical blanket. As medicine goes now I take sifrol2,1mgx1, rivotril 0,5 mg x2, OxyContin 10mg 2x2. This helps and does not have side effects . I have almost stopped drinking coffee and eating cheese which I think helps.

  • I'VE RECENTLY GONE ON TO THE NEUPRO Patches 2MG SLOW RELEASE .I'VE HAD SOME EASING OF RLS BUT I'M NOW TRYING TO SORT OUT THE YEARS OF INSO MMNIA .i'M ON 3MG OF MELATONIN (HERBAL MEDICATION) AND THERE IS SOME IMPROVEMENT ALTHOUGH I WONT TAKE THEM EVERY NIGHT..I FEEL BETTER TAKING MELATONIN RATHER THAN ZOPICLONE PRESCRIBED BY THE DOCTOR WHICH IS HIGHLY ADDICTIVE IF TAKEN EVERY NIGHT. FINGERS CROSSED ALL THIS TRIAL AND ERROR HOPEFULLY WILL LEAD TO SOME IMPROVEMENT ALTHOUGH I DONT EXPECT MIRACLES BUT AFTER YEARS OF SUFFERING i'LL TRY ANYTHING AND HOPE AUGMENTATION DOESN'T SET IN AS HAS PREVIOUSLY HAPPENED

  • Again thankyou all so much.. I had a really bad night to the point where it started with my legs ..I managed to fall asleep but hubby says he had to hold my hands down as my whole body was in spasm?? I then woke with cramp in my legs and spent an hour walking it off :'( I feel for you all who suffer this dreadful condition..

    I went to see my GP today to ask about changing my meds.. We talked about mirapexin but she said she so not have the authority to prescribe it ..I have to wait to see neuro?? I have not got an appointment for at keast 6 months ..I walked out in tears ..

    Hubby decided to ring our local private hospital and pay to see a neuro OMG THE COST! but im worth every penny ;-) I have an appointment in 2 weeks but get this.....ONLY WITH THE SAME NEURO IVE BEEN WAITING MONTHS TO SEE ON NHS!! oh well I guess I should be happy to be getting somewhere :-) again thankyou all for your support xxx

  • Good luck honey...what a lovely hubby!

  • WOW, you what a supportive hubby, and you are really going thru it. I find the lack of treatment crazy ( I am in the US), but wow. So sorry you have RLS on top of all the rest of it. Quinine is not supposed to be used for RLS at all ever. That is old and outdated information. Plus, the FDA in the US has issued a back box warning, and because of serious risk of heart failure, and is only to be used for treatment in Malaria. It does not help RLS (99%) of the time. Leg cramps are muscular and people use/used it for those, and doctors sometimes wants to treat RLS like leg cramps. We can have both, but they are different things. :) WOW, I am so glad you are seeing a doctor in weeks instead of months. make sure you ask him how many patients he has treated with RLS. :) important question, and write all your questions down. That will help, too. Good Luck!

  • Thankyou everyone for your support :)

    my legs feel like I ran a thousand miles ..they ache all over and feel like jelly .. had enough now ..only another 5 days to see neuro ...I hope he helps :'( I hope hes worth every penny as ive saved like mad for a private app .. I cant wait another 8 months to see him :'(

    Rachy

  • Try compression stockings.

  • and let me know whether it helped

  • Hi i'm on mirapexim (for rls), my rheumatologist suggested and my GP prescried, i am also on tramadol and amitripline for Ehelrs-Danlos syndrome. Since put on ami and mira i'm getting better nights. Hope u find same help soon xx

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