Anything new to try

Hello and sorry you like me are on this site as I know how much you are suffering.

My RLS started about 10 years ago but if I think back to childhood it was there then and called growing pains (All 5 feet of them).

I am on 2mg of Ropinerole but it is now not working. For the last 2 years I have not slept more than 3 hours in one go unless I took a Tramodol with the Ropinerole.

I have heard that some people have been 'cured' by having tests and treatment for leg viens. I think but am not sure the test is called a Doplar test. The tops of my legs are very hot and below the knee like ice even now we spend the Winters in Lanzarote.

RLS runs my life, have to double medication to fly just for 4 hours, cannot go to the cinema, to dinner, on a bus (trains ok can walk around) car journeys but have to stop but then I am talking to the converted.

How do you all cope??????

Rant over thanks for 'listening'

Lynda (cefndaniel)??

9 Replies

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  • Hi, Dont worry about ranting, we all do at some time.

    If the Ropinerole isnt working, then i guess its time to try another med. Some people use Tramadol for their RLS, its not one i can take as it makes me ill.

    If you can find a medication that works better for you, then hopefully you can do those things that your RLS is stopping you doing at the moment.

    Irene...

  • Hi Linda, i just checked and its called Doppler test, but ive not heard of it before, and never in relation to RLS!!,weird one isnt it, and ive certainly never heard of anyone being cured of RLS,at least not so far, but i live in hopes.

    RLS does tend to rule our lives doesnt it, i havent been on a plane for a few years now,i dont think i could cope with it again.

    I think we all cope because we dont have a choice, do we

    jean

  • Hi Linda :)

    As Irene said no worry on the ranting lol we all do it usually when we're knackered and no bugger about to moan at lol , I started with RLS when i was not sure why the call it RLS when i get it in both legs and arms and when all four go for it i swear i could be like spiderman climbing walls ,

    I tried Ropinerole couple so years ago worked great for 5 days well.......... if you don't mind dropping off to sleep without notice but after 5 days they stopped working :( , I'm lucky if i get couple hours sleep a night seems to be hit one miss one ,

    Dr's don't seem to know what causes it some dr's never even heard of it pot luck if you get one that knows what it is ,

    Lol at the car bit bet you feel like most of us when in a car feel like opening the door and running at the side of it lol hmm... not recommended ,

    think a good sense of humour goes a long way if you don't laugh you cry and that fix's nothing only give you puffy eyes which no doubt already will be from lack of sleep lol ,

    Anyway................looking up i'm beginning to babble on not meaning to take over your blog lol opps sorry sweet ..

    wishing you everyone on this site well and keep smiling don't let it win :)

    Good Luck Linda :) like you we're all looking for answers to something no one seems to understand ,

    Sal x

  • The Doplar test can reveal blood clots in leg veins (deep vein thrombosis, or DVT) that could break loose and block blood flow to the lungs (pulmonary embolism).

    DVT needs to be ruled out before continuing. The drs. missed this in my aunt and it was a fatal mistake.

  • I am lucky enough to have a doctor who does seem to understand, he gives me the meds i need. I have tried all of them, either they didnt work or made me way too sleepy during the day. When one medication doesnt work or stops working then its time to change, its all trial and error. I am at the moment using the Neupro Patch for the second time round, its the best med for me so far, it has its ups and down, sometimes i get a night where it seems to stop working, then rights it self the next night.

    This condition is soooo complicated in everyway.

    Irene... :)

  • All I got from my doctor, and she actually suffers herself, was a fact sheet!!! What is the Neupro Patch, does it have many side effects?

    My doctor also was unwilling to give me any meds as I am 32 - apparently too young for something at least!!

    I don't actually remember the last time I had a good nights sleep. Sorry for the random prying questions.

  • You are NOT to young for having medication for RLS, i am surprised by your doctors comment, considering she has it aswell.!! The Neupro Patch, is like a non smoking patch, you stick it to your skin for 24 hrs and it releases the medication slowly, like all meds, side effects can occur, It just depends on how your body response...i am using the patch, but i have a very low tolerance to all RLS meds. so i use it differently so my body can cope with it..

  • I have had the Doppler test each time before having a varicose vein operation. The test and the removal of veins did nothing to help my RLS. The RLS comes and goes with me and I do appreciate how fortunate I am. The varicose veins return too in different places in the legs so have given up having any more ops to remove them.

  • Have you tried compression stockings?

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