Hi I am mopsy ,have just joined I live in New Zealand

It's so nice to have people that I can talk to ,I've been so long living this nightmare on my own ,unless you have the problem yourself no one seems to understand ,I have yet to meet someone here in New Zealand with RLS if there are a lot of us I don't know about them ,we don't seem to have professionals to go to like you do ,we are in limbo so it's nice to know I'm not on my own ,never heard of the tablets you take either so will pop in to see what's going on if you don't mind gives me something to do in the we small hours

26 Replies

  • Hello. I have just joined this too, and I love that we can all support each other.

    No one gets it at all.....its just sooooo frustrating and tiring.

  • Hi jillypink welcome aboard it's good to be able to express how you feel , had a bad night tonight it's 4.00 in morn here ,my husband just carries on sleeping, I do get his sympathy but I don't think even he really understands just says another bad night , and I feel guilty when I can't get up in the morning ,makes me feel lazy but am so b tired ,I make him sound mean he's a lovely man but that used to me up and down takes no notice well off to bed again for a while hope you have a good night

  • hi there yes i had it RLS and many other things to cope with take care Alan

  • I know Life stinks bigalan ,,I to have other problems but just to get one or two sorted would be good

  • hi there yes it would be nice if we could sort out just one or two, but its not going to happen for me, mine will just get worse and worse, but after all these years i think i've got use to them, anyway my friend if you don't mind you can knock the big off, i know i'm 6 ft 3 inches and 21 stone but i've come down a bit in weight from nearly 28 stone to 21 stone, so if you don't mind my name is Alan take care speak to you soon

  • Ok Alan

  • hi there hope your ok today its 08:30 am i take it you are still in bed fast a sleep speak to you later your friend Alan

  • Hi Alan it's 9.30 in the evening here how was your night ? Last night wasn't to hot bit like a yo yo trouble is I get so b grumpy hope for better sleep tonight catch you later my friend

  • hi there my night wasn't good had very back leg and knee pain was up until 2:00 am this morning then i manged to get a bit of sleep, its now 10:52 am. i can't imagine you being grumpy, so take care speak to you later your friend Alan

  • Hi Alan have you had knees replaced ? Or have you bad arthritis ,I took full amount of tabs I'm allowed plus codiene phosphate and had reasonable night I thought ah well if I wake alls well at Ive had a good day hope you sleeping ok

  • hi there no i've got honey comb bones in my hips, legs and knees, they say that i can't have any replaced because there is nothing for them to attach to, so when my bottom half goes altogether then i'm in a wheel chair then for rest of my life. i'm like you on a lot of medication, injections, and i have a C.P.A.P Machine to wear when i'm sleeping because i have server sleep apnoea to which means i stop breathing some 30 time per hour every hour so by wearing this keeps me alive. where in a mess with our health condition. hope you had a good night sleep take care speak to you soon your friend Alan

  • Oh Alan it's so unfair do you have help when you need it

  • hi there no i've got no help at all, when asked for help they said i could managed by myself and that's how its been since. there is just me, myself and i. we meet a good team. hope your feeling ok today take care speak to you soon its 23:22pm now and i'm just of to bed Alan

  • Welcome to the Group Mopsey, you will get help and support from a lot of well versed people who suffer from severe RLS. Good luck and best wishes to you.

  • Thank you blokie it good to have people to talk after all these years I'm starved for information on the subject

  • Hi Mops, you need to ask for a referral to a Neurologist ,preferably one who specialises in Movement Disorders) or a Sleep Doctor

  • Hi Pipin2 ,,it sounds daft but at the time thought I was going mad was sent in to hospital to a doctor who sat me up on a table moved my legs around checked me over sent me down corridor for blood test and that was it so not sure who I saw but going to ask to doctor as soon as I've had my half knee done (one thing at a time for me) to see neurologist all I know is I'm back to square one so will keep you informed thanks for listening

  • Hi there fellow RLS sufferer! I have had RLS for years. I was diagnosed with Parkinson's Disease in 2008 (by enlightened GP! - not many of those about in UK!) and officially by neurologist in 2009. My treatment started with Sinemet which alleviated the RLS but as time went on and my PD got worse I was prescribed Stalevo which is basically Sinemet+entacapone (to help the levodopa go further). Now I have to keep Stalevo doses at set times to stop RLS happening. Three hours between Stalevo keeps the PD more or less under control and the RLS doesn't happen (only in rare instances).

    When I had RLS originally it would always be at night and if I r an on the spot for several minutes until good and tired it would stop and both legs would calm down. Now with the PD I seem to have several different types of RLS - evening symptoms require three hours between doses, night RLS which is triggered by leaving more than three hours between doses and any time RLS which can include arms and whole body! Also evening RLS makes me totally agitated and HAVING to move about whilst waiting for my meds to work. Night RLS means I can't lay without being extremely agitated in my legs but I can sit in another room without upset! Also only one leg at a time gets RLS! PD is on my left side and whatever triggers the RLS in my left leg doesn't necessarily trigger RLS in my right leg! Mad! Also when I move to try to alleviated left/right leg the RLS switches to the opposite leg! The two legs NEVER get RLS at the same time!

    Anyway you are not alone and to quote a PD and RLS sufferer (me) ".....it's never so bad it can't get worse......."!

    Sorry about that - trying to keep upbeat! Perhaps my old method of running and walking at different speeds on the spot - I used to place my hands flat against a wall to keep balanced - will help. I used to run on tiptoes and placing my feet lighter then harder as I ran - anything to vary steps but always on the spot until I was tired and then ease down the pace until finally stopping. Worth a try anyway. If you can't get drugs - Ropinerol was suggested to me - but I refused to take it as now being 70 and knowing the side effects on older people I knew it would be a bad thing for me personally. Gabapentine and a slightly different version of it called Horizant which is specifically designed for RLS in US was of interest to me and I was going to pursue it should my present meds become useless (for RLS at least).

    Something for you to chew over at least - sorry you feel out in the wilderness with no help. I know it is not much comfort as far as RLS is concerned but you live in a most beautiful country which I am sure you love when RLS leaves you alone - if ever!

    I have to go and get dosed up now - 10.18pm UK time - overdue!!!

    Bye for now and best of luck - keep posting!

  • Hi simplesoul there is always someone out there worse than yourself my sympathy for you have tried the running got a cheap running machine and used that for awhile but that noisy had a complaint didn't seen to help anyway have tried rolling on the floor the part that is playing up push down and wriggle around on it that helps me ,I was diagnosed but don't think it was a neurologist ,who started me on sinemet but the body gets used to that one pretty quick I remember it was a yellow green colour ,like you mine is always in a different place one leg ,finally get that part settled back to bed off to sleep next your up with a different part of same or other leg the way you take your pills is awful must be a better answer than that ?

  • Just a word of warning about Sinemet, it is no longer recommend as a daily treatment for RLS due to the high incidence of augmentation experienced by users.It should only be used for occasional RLS x

  • Hi Pippins2 I didn't stay on them very long,d body got used to them to fast and have been on clonazapam for some years now always been able to take different amounts from 1and half up to four when bad which I have been lately ,but make you sleepy IN the morning not when needed, but at a good stage worked well but think will have to change, never heard of half the pills you people have so will be interesting , we moved house just before Xmas and are living about an hours drive from my doctor, a bit reluctant at moment to change in case I get someone that knows even less about RLS than where I go now, and hubby is in the middle of tests so best all round we stay put for moment, we moved to be closer to the kids and amenities ,faster trip to hospital in case it's needed,long wait with panic waiting for ambulance before well T must be ready catch up later

  • Hi again. I meant running on the spot directly on floor! I have only used a running machine in gym. And actually your feet don't leave the floor! - keep toes on floor and push up as if running but staying in exactly same spot! - vary how you use foot - slowly and then more quickly for longer and then shorter times. As to "there must be a better way?" - not at the moment - the worst part is during the night. I take 100mg Stalevo (levodopa) at 1pm, 100mg at 4pm, 100mg at 7pm and so on through the day - three hours each time - so not much sleep! I get various PD problems and they are all a nuisance - to put it mildly! Can't remember a time when I was normal as in 2006 I was diagnosed with malignant melanoma on my scalp, duely carved up (think Indian scalping) three times as the first operation wasn't totally successful and then PD diagnosis. Not complaining as some people are dead at my age! My husband could and should be more helpful as despite PD I am still keeping my end up but he does nothing extra to help. He does our bit of shopping and I mean a bit about six items each trip - which is a ridiculous waste of petrol - and we always end up eating the same things. I am a vegetarian - he isn't - and he uses it against me saying that there is nothing for him to buy at the shops when there is plenty listed online! He can't and doesn't want to cook so if I feel too bad to cook we don't have anything just sandwiches! I'm afraid he is actually bone idle and spends hours sitting and reading newspapers and watching tv and lets me get on as best I can. He is a very hard and uncaring man and he was like this before my PD but for some reason I wouldn't recognise this - but it is sure hitting home hard now! He is only interested in himself and what he has done and thinks. When you have an ongoing disease it is bad enough combatting the disease without having to put up with an overgrown schoolboy for a husband - he is 80 and thinks because I am ten years younger than him I can do everything and I can't.

    Anyway "enough already!" I must away and make a coffee and carry on with my lonely vigil - my husband goes to bed just after 8pm!!!! - after another one of his "oh so heavy duty" days! At least I have my three cats to keep me company - thank goodness for animals - I've had more than enough of humans!

    Bye for now

  • Hi simplesoul , sorry your hubby is such a prat.Glad you have your cats to keep you company x

  • Hi Pippins2! Love my cats to death! One is disabled (from birth or shortly after - cerebellar hypoplasia which makes him a lot like me - bad balance and uncoordinated movement. He can't jump up or climb trees etc but can walk and even run except he runs on tiptoes! Plus he has loud footsteps (no pussyfooting for him!). My other two are females and tend to fight a bit and compete over territory etc. Mostly though there is peace interspersed at night with my getting up to open doors so they can go out - in summer they use an open window - along with several neighbours' cats!

    Next door cat is very aggressive and comes in to pick a fight whenever possible - cheek!

    Anyway back onto subject in hand - RLS is a real pain (in more ways than one - mine is more or less under control at the moment - Horizant is the one drug I would try if things change - whether I can get it in the UK I don't know as only certain people qualify for its use here now but hopefully that will change and any sufferer will get access. Luckily Stalevo for my PD is controlling my RLS at the moment but only when used at the right times for me

    From where I'm sitting husbands leave a lot to be desired! When they get the smallest ailment you'd think the world was ending - when we women suffer it is of no consequence and we must be exaggerating!

    Must go now - speak again soon?

    Sorry I never asked if you are suffering from anything horrible? I hope not but it was rude of me not to enquire earlier.

    "....living can be dangerous to your health...."!

    Bye for now

  • Hi again and sorry sorry sorry just found your site and see you suffer from RLS and Graves Disease. Ain't life wonderful? - and I see you are in UK too.

    RLS I know but Graves seems to be the opposite to me - hypothyroidism - technically undiagnosed in UK but probably would be in US where they have more sense and have widened the net to include more obvious sufferers previously left untreated. The NHS doesn't want to spend any more money so "let's say they don't have it" and ignore them. I don't know if you remember a few years ago an NHS doctor actually prescribed thyroxin to a woman contrary to BMA regs and nearly got thrown out - the fact that the women benefitted enormously from the meds didn't concern them one bit - so much for our lovely "healers"! Anyway I have all the symptoms of hypothyroidism and no meds allowed - gotta love the UK!

    Going off subject - sorry. You obviously are suffering loads and my sympathies are with you. Good to have this site to visit and share with others and maybe pick up something of use.

    Anyway "keep your pecker up" and do whatever helps you best (besides meds) to get through the day.

    Bye for now

  • Hi simplesoul yes I have Graves Desease but thankfully after treatment I am now in remission. My RLS is also now well controlled. My biggest problem is coccyx pain and I am awaiting surgery to have it removed. However I am feeling happy as my first grandchild Is due in 10 days time x

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