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[Violet55]

Hi, I'm new here and have read quite a few posts tonight which I've found really helpful. I was searching the Internet in desperation, yet again, to see if I could find something different to help me relieve my symptoms and came across RLSUK, don't know why I've not seen it before. I blame it on sleep deprivation!

I guess I've had RLS for many years from being a young teenager and it being put down to 'growing pains' then I was always told to stop fidgeting and keep my legs still and long car journeys were uncomfortable to say the least. Funny really as my Mum suffered with RLS but it was never suggested that that was what was might be wrong with me. However, I'm not sure that in the early days my Mum was diagnosed with RLS.

RLS particularly bad tonight, and yes, even painful; how my husband sleeps next to me while I'm fidgeting and jerking and tossing and turning I do not know. But it doesn't last for long because I get up and pace backwards and forwards, vowing 'not to go downstairs tonight.' As you can imagine that only lasts so long too, well I don't want to make too much noise, so downstairs I go. Even Molly, our dog knows the routine, I often feel like taking her for a walk, but well it's a bit late and a bit dark, not that she'd mind! And it would no doubt do me the world of good, so instead I pace downstairs, sometimes making good use of the time other times just waiting for the time when I may be able to go back to bed. Or will it be one of those nights when I get no sleep at all......please, no. My GP hasn't prescribed any medication for this, saying that the morphine I already take should be suffifcient! I was prescribed morphine following spinal surgery but only take it when I'm absolutely desperate as I don't want it to become a med to which my body gets used to and consequestly is ineffective. If I take a sleeping tablet I feel like a zombie the following day and find it hard to function properly,generally feel rotten, but at least I have had some sleep. In the past when I've not slept for long periods and found it hard to stay awake during the day I've resorted to 'power drinks' and caffeine tablets. They've helped and haven't seemed to make the RLS any worse, but it's just a viscious circle.

Off I go to wander again. Thank you for 'listening.'

(Oh for a 'normal' life )

[Hidden]

Hi. I've not had morphine but it doesn't seem to be working for you. Like you I've suffered from it since a child. Although when you said how you were told to stop shaking, you've just jogged a memory of being told that myself. I hadn't even connected it to this. I also couldn't sit still for long. The dog loved to sit on us for a cuddle but she never stayed on me for long because I always had to move. Thanks for the unintentional memory jog.

Anyway. I didn't say anything to my doctor about my legs as I thought it was just me. But I found this site and was grateful it wasn't. Although saying that, I wish there were no others suffering too. I'm on duloxetine for depression and that it helps with the rls. Gabapentin, and tramadol. If my legs really start to play up I have 10% ibuprofen gel to rub in. I'm still with my gp dealing with this although I'm thinking I might need to start seeing a specialist. I had two good nights just gone but tonight I'm up with it again. As for walking the pain of, if I tried that my cats would have me over.

Why don't you take some brief literature, so's not to over work their brains, and see another gp in your practice. See if they are any good. If not then maybe you could look around for another more suitable one.

Hope the folk here have been of help to you, they have been to me. and welcome to the site

[Violet55 in reply to Hidden]

Hi Blackcurrant_Bubbles,

Isn't it funny how something sparks a memory? You've reminded me of how our dog, who used to like sitting on our laps, didn't sit with me for long either because of my constant fidgeting. Our dog Molly knows that when she sits with me now as soon as I move a tiny bit she jumps down because that's the start of me moving up and down etc!

You're right what you say about the forum and wishing there weren't any other sufferers, couldn't have said it better myself.

I also take tramadol and sometimes take 2 just before I go to bed in the vain hope that it will help help me sleep as well as taking away the symptoms.......well one can live in hope, hey?!! I can't take gabapentin, pregabalin or amatriptylin.

Thank you for the lovely welcome and the people on the forum have been a great help, given me the confidence to see gp next week armed with information and more knowledge to help me get results.

Hope you enjoyed your trip down memory lane

V x

[maesllan5]

Hi please go back to your doctor and take as much information on meds to take with RLS I had to do this and make them listen to you. I'm on Pramipexole which relives my RLS but not with sleep!!! Now on Zimovane LS 3.75 taken when desperate does help some!! My heart goes out to you as it's hell. This is the best site life saver for me, keep with us the best people on here

[Violet55 in reply to maesllan5]

Hi Maesllan5,

Thank you so much for the great advice. You're right the people on here are marvellous and I'm so glad to have found the forum.

I'm seeing my gp next week and have the confidence now to go and hopefully get some results, I'm taking all this info with me btw!!

V x

[connie50]

hi violet55 welcome to the site were you will get plenty of info regarding RLS I've been a member for quite a while & met some lovely people on this site, you will get a lot of help & advise from long standing members, my advise is to get some meds for your RLS go to see your GP have plenty of knowledge (I m from England)look it up &print it of &take it with you (I did) to show your GP tell him about this site, there are not very many GPs that have any knowledge about RLS so that's why you have to take with you as much info as possible, I no it is a lot to digest but the best place to look up info is to go on DR BUCHFUHRER

web site he is the most reputable DR in the world that understands this dreadful condition & has wrote several books on the matter hope this helps SUE

[Violet55 in reply to connie50]

Hello Sue,

Thank you for the warm welcome. I'm also from England! I have sometimes felt that I'm talking to a brick wall when I've been to see the gp about RLS as he's just sat in his chair smiling, nodding, mmmm-ing and generally not saying much at all. So the information from all the lovely people on the forum is just marvellous and I'm so glad I found this place.

I'll check out Dr Buchfuhrer without a doubt and will go armed with lots of info when I see gp next week.

Thanks again.

V x

[Hidden in reply to Violet55]

Violet rlshelp.org is where advice from Dr Buchfuhrer can be found. RLS-UK also has excellent info.Good luck at docs.. Good you cant take Amitriptylene as it makes most sufferers symptoms much worse.Be sure to check out amy other meds thst are known tp make RLS worse for most people. They are mainly but not only antidepressants, anti sicknesd and sedating antihistamines ..pipps x

[Violet55 in reply to Hidden]

Hi Pipps, Thank you so much for the link, I'll have a look shortly and I've already browsed RLS-UK and seen the brill info there. It's interesting that you mention anti sickness meds, I sometimes take them related to migraine, will either not take again or make note what a difference it makes if I do take it. Not that I take it regularly, perhaps 2 or 3 times a month, will definitely keep a check on that one. I'll also check on other meds as you suggest.

Thanks again.

V x

[Eileenk]

Hi Violet

Welcome to the forum. I'm a bit of a newcomer myself! It's really a god send to chat with other people and get some brilliant advice and tips.

I'm sure you'll fine some comfort that there is something to do in the early hours!!

We all know what you're going through as we all get those periods which are particularly hard and sleep,deprived. I've had 2-3 hours most night in the last 10 days....

I have ordered something which I found on the web to massage your legs, I'm hoping it will help...I'll keep you all posed on how it goes!!

Hope you get some sleep tonight Violet, if not you know where we are while our other half slumbers!!!!

[Hidden in reply to Eileenk]

Hi Eileen, do yoj mind me asking what sort of thing you have ordered just out of interest( nosy!)

Pipps x

[Violet55 in reply to Eileenk]

Hi Eileen,

Thanks for the nice welcome. You're right it is a Godsend to chat with other folks and the information and advice is wonderful.

Yes it is good to know that instead of pacing, cleaning (sort of) the oven which I did when I got up earlier - well I wiped it over, wouldn't call it scrubbed clean, I was just so flipping frustrated and angry and didn't know what to do with myself - you know that feeling I guess? That there's somewhere to come to in the wee small hours, knowing there's someone else out there doing the same........no, not cleaning the ove, who'd be daft enough to do that?!! Mind you I have done stranger things!

Last night was a good night, wonderful in fact, I slept all night, previous night not a wink at all. Went to bed early tonight as RLS was particularly bad, had a shower, 2 tramadol, took a while of tossing and turning but eventually must had drifted off to sleep. When I woke up, I was so delighted to realise that I'd been asleep.............for an hour and a half, but I'll take it, I'll take any amount of sleep I can get, thanks. Husband, fast asleep bless him!

Will be interested to hear how you get on with what you've ordered from the internet. Fingers crossed it really helps.

V x

[Eileenk in reply to Violet55]

Hi Violet

I've ordered CLEO ACTIVE LEG MASSAGE SYSTEM as I really aching legs these last few weeks...

Unfortunately, it hasn't got off to a great start...it came with a faulty control box so had to send it back...

Tried to go to bed an hour ago but RLS is soooo bad ended getting up...

I so long for a whole nights sleep! So glad you had a good night, it really helps to get a bit of a break!

Had to laugh at the whole "asleep for an hour and a half", how sad are we that we are grateful for 1.5 hours sleep..bet you wish it was a repeat of the previous night, eh! I didn't even get that tonight, worse luck and it will probably be the wee small hours before I attempt to go back to bed...

Maybe I should get a job doing night shift lol!

[Hidden in reply to Eileenk]

Look forward to hearing of your experience with this Eileen x

[Eileenk in reply to Hidden]

Thanks, Pippins, will kept everyone posted. I'm really desperate now, have had pain for the last few weeks. My poor hubby is giving me massage every night, bless him!!

Rubbish night tonight....terrible rls...

I bought this super duvet and flat sheet called the Teddy Bear collection from Dunelm-Mill.co.uk. It's like sleeping in a fluffy cloud, soooo cosy but haven't had time to enjoy them very much with my stupid rls!

You may like them Pippin seeing as heat helps your rls!?

[Hidden in reply to Eileenk]

I will have to have a look at Teddy Bear collection not heard of it before. My legs are bit antsy tonight, not too bad thank goodness, Thimk its because I have reduced my painkillers from 2 to 1to see how I go with that, I am a late sleeper but touch wood once I am asleep I do ok.I have the hot water bottle on my feet, my hubby is snoring away and I am reading up on Narcissism! I think the years of being up with RLS has given me a delayed sleep pattern-so my doc says! I drop off very late these days even when legs are ok.With the Neupro patch my symptoms are much improved but do get the occasional bad night, Hope you get some sleep nite nite ..pipps x

[Hidden in reply to Eileenk]

Well Eileen seems I have come out in sympathy with you! My symptoms have ramped up, I tried taking just one painkiller instead of 2 to see how legs would react -now I know!

[Violet55 in reply to Eileenk]

Hi Eileen, I've often thought about night shift work in the past! Am going to read ahead to see if you've received your new massage system yet.

V x

[Eileenk in reply to Violet55]

Hi Violet

Haven't got it yet, hopefully tomorrow or Saturday. I'm desperate to try it as my rls is at its worst when I go to bed, so I think have a massage early evening might help. If it's bad during the night, I can always do it again then....fingers crossed..I'll post when I've had a go!!!

[Violet55 in reply to Eileenk]

Hi Eileen,

Bet you can't wait for it to arrive, it's the anticipation of it arriving and the hope that it's going to give some relief isn't it? My rls is worse when I go to bed, starts when I'm getting tired then once I'm in bed, that's it.

Keeping my fingers crossed you receive it very soon.

V xx

[maesllan5]

Hi let us know how you get on please good luck

[Violet55 in reply to maesllan5]

Thank you, I will.

V x

[beady3]

Hi there,just read your message,yes we all do things like that our houses should be spotless. What I want to know is you said you took 2Tramodol and went to bed , what strengh was that because taking 2 in one go seems a lot ,I take 2in the day beady 3

[Violet55 in reply to beady3]

Hi Beady3, I take 2 x 50mg and presciption is for 1-2 four times a day. Needless to say I don't take them like that and not on such a regular basis. Have tossed and turned all night tonight until I gave up in the end and got up. I took just 1 tramadol as I'd taken oramorph and naproxen earlier in the night. Is there any wonder I've got a thumping headache? Ha!! As for the house being spotless, I wish. If I could clean in the night it might have a chance, but come daytime, well some days with being so tired out I struggle to run the vacuum round. Such a slatttern V x