Liquid Oromorph for RLS

Hello, I am new here and I found this site a couple of days ago when I was "surfing" in the middle of last night, trying desperately to find out if there was anything I could do to help me cope with my rls.

I have had rls on and off (usually only mildly) since I was about 8 - knew what it was because both parents have it too. But for the past few years it has been getting much more difficult to manage and, at the moment, it is driving me mad! Both legs and arms are affected and, when it is at its worst, I am up most of the night because I can't lie in bed and can't sleep.

I have a number ot other health conditions so am pretty used to lack of sleep, but the rls at the moment is something else! Have been trying to wean myself off prescription codeine (prescribed for another condition) because it gives me really bad stomach problems but it's a bit of a catch 22 really because it does help the rls to some extent. Tried a Temazepam for a change before bed the other night and felt really optomistic that I would get a better night's sleep. But it lasted 2 and a half hours before the rls woke me and I had to get up.

Because of other health stuff, I spend a huge amount of time just sitting at the moment and I have found that the rls can be a problem during the day as well, (although nothing like as much as at night time).

On a positive note, my doctor prescribed Liquid Oromorph (liquid morphine) for me yesterday to see if it would help me sleep through the rls and I am thrilled to say it worked! I took some during the afternoon which meant I could sit relatively comfortably during the evening, and a further dose before bed which gave me four and a half hours of uninterrupted sleep which is pretty much unheard of for me! I hope it's not just a "fluke" ! Just wanted to share this incase it might help someone else.

Tillyx

9 Replies

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  • Hi Tilly, yes, i have tried liquid oramorph a long while back now, i cant remember if it worked for me but i do remember it made me very drowsy the next day, but that isnt unusual for me as most meds, do.

    It should work well for you and hopefully not be a fluke. Its a pain med. and usually pain meds, can be used for RLS, and i know alot of people who take pain medication for their RLS with success.. Like the codiene, another pain med. which can be used for RLS. but it seems it did not like your stomach.

    Thanks for sharing, and someone might try the oramorph and find it helps them when all else has failed...

    Oh, i dont take it now, because of the sleepiness the next day..

  • Thanks for your reply Elisse - and thanks for your encouragement on the oromorph. Have taken some again this afternoon when legs became jumpy and has definitely helped so I am feeling quite optomistic about it working again tonight.

    I was worried about the potential for a "hangover" type effect the following day but I didn't notice that I was actually any "dippier" today than I usually am in the mornings!

    Thanks again Elisse.

    Tillyx

  • I've been prescribed oramorph before for extremely painful diabetic neuropathy - the only problem is, Doctors really don't like giving you it long term - you may find your GP becomes reluctant or even refuses to give it to you after a reasonable short while

  • Been using for for 4 years and take around 800ML a month. Helps with the pain of RLS but not my actual RLS.

    Bob M

  • Thanks evianfan and BobM for your comments.

    Evianfan - I'm hoping the GP will continue to prescribe the Oromorph if it continues to help. I have some other complex medical problems and my GP is very understanding and happy to do whatever he can to help.

    BobM - glad the Oromorph helps with the pain, but sorry it gives no relief from the rls itself.

    Thanks again for your posts.

    Tillyx

  • I have been prescribed, at my request, 50 mg Mysoline at bedtime (Primidone), and it has worked for me after 25 years of suffering from RLS, albeit thus far. However, I think my brain is conditioned to wake afte 2-3 hours but I have noticed that after waking I am not suffering from RLS (no twitches at all) just wide awakefulness! Hmm,!

    Try it and let me know how you get along.

    Lor7

    PS I have tried virtually everything else!

  • Hello, My Doctor has prescribed me TRAMADOL + it has SO FAR really,

    helped with my RLS, I take X2 100mg about 2hrs before bedtime,

    As an extra med to my Normal RLS Med which is (Gabapentin)!.

  • Thanks Lor7 and Popmaster for your messages.

    At the moment the Oromorph is still working well for me but I have made a note of the meds you mention for future reference.

    Thanks for taking the time to post.

    Tillyx

  • hi i know what your going through nites and nites of no sleep i was diagonosed with rls last october so im pretty new to it i started off on tramadol but couldent take it it made me ill then started takin nortriptyline and clonazepam which to be honest have done nothing for me but leave me with mood swings tiredness { during the day } and feeling like a zombie i came off both meds 3 weeks ago but went back on them stupidly finally realised that its not for me so come off them again this will be the 3rd nite with no meds so far so good i take spatone iron liquid with pure oj zinc tablets and magnesium tablets im going it alone hopefully cant feel any worse than been on the tablets will keep u posted how i get on

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