Fed up ,tired : Mini rant fed up and... - Restless Legs Syn...

Restless Legs Syndrome

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Fed up ,tired

gypsy49 profile image
26 Replies

Mini rant fed up and tired .... yeah i knooooooooooooow lots feels the same we all have our own fights each different but know what each feels so not gonna rant on lol just a mini moan not going to bed nearly half 6 am not worth it now , moan over and out ;) everyone have a fab day,....

26 Replies
Izzybelle22 profile image
Izzybelle22

Hey gypsy49. I hear you! It is currently 1:47am Friday morning so there is a 5 hour difference between the two of us and I just took my ropinirole and am wafting for it to kick in before I attempt to lie down and watch TV. Sleeping is not really an option...I'm a bit of an insomniac and the RLS definitely contributes to the inability to sleep/relax/sit still/feel comfortable/live which in turn makes the RLS worse. It's a vicious cycle from which there is no escape.

gypsy49 profile image
gypsy49 in reply to Izzybelle22

I have insomnia too so can go days without sleep till i burn out which is one of the worst feelings , i've done baking and my house work and put the washing on the line got some more baking to do once my puff pastry's had a rest haha more rest than me have to say lol Aye RLS bain of ones life ggrr much as we moan about it, it doesn't make it any better quite the opposite more we stress about RLS the worst it is yet the more relax we feel the worst it is lol jeeeez! and so around it goes . Hope you manage to settle and get some sleep .

Parminter profile image
Parminter in reply to gypsy49

Gypsy, two things -

First, insomnia is part and parcel of RLS/WED for many of us. The sleep problems are a separate but associated issue, this is very well studied. So the movement disorder destroys sleep, but there is additional insomnia apart from that.

So it is dyskinesia PLUS insomnia, not only dyskinesia CAUSES insomnia.

Second, dopamine agonists can cause insomnia. I took pramipexole and I had sleep deprivation for many years. It used to be on the package insert as the major neurological side-effect, now they have managed to 'disappear' that information.

But if you hunt diligently through the web, you will find it.

in reply to Parminter

Hi Parminter, what is WED? as in RLS/WED

Parminter profile image
Parminter in reply to

Manerva, it means Willis-Ekbom disease.

Doctor Willis was a physician to the Royal Court in the 17th century, and he was the first to describe it as it is - as torture. Those were the days when fine physicians did their own research - no drug reps to feed them partial information.

Doctor Ekbom was a physician in the first half of the twentieth century who tried to put RLS on the map as a serious condition, and the first to write fully about it.

Organisations like this tried to change the ludicrous and harmful name of our disease to Willis-Ekbom Disease, to give it the gravity it deserves.

People were foolish enough to vote it down, thus leaving us with a Mickey Mouse name that garners us Mickey Mouse attention and care.

Words have immense power, and 'Restless Legs Syndrome' has harmed us . It still does.

So I choose to call it WED, and I wish others would too.

in reply to Parminter

Ok, I need to show this to my psychiatrist. Mind if I share it? I’m actually quitting him soon (we have a definite end date!), but depending on how much info. he gives to the new one, I will need all the help I can get!

Parminter profile image
Parminter in reply to

How else can I help, Sails?

One of our greatest heroes is Doctor John Winkelman of Massachusetts General Hospital and Harvard. He is Professor of Psychiatry, and he works hard to help us.

On the whole, I detest psychiatrists, but not Professor Winkelman..

PS If your psychiatrist looks avuncular, smiles gently a lot, and has a desk as big as a soccer-field, fire him.

in reply to Parminter

Thanks for the tip!😆

Thanks for the offer to help as well, but I think I’ll be fine. This one has certainly taught me a lot, including how not to let people walk all over your feelings. Believe me when I say I feel empowered already. Remember my psychosomatic pysiotherapist? Well, she actually initiated our cut-off from each other; she could sense how much I was suffering, which included my feeling that the psychiatrist referred me to her to calm me down.

gypsy49 profile image
gypsy49 in reply to Parminter

told my neuro it's called WED he wouldn't have it told me it's an American thing to call it that same as all the info i took for him to read through again he said he's not interested in reading it cos it's all American info i told him he should read it seeing they do more research into RLS mind you i took my sleep diary he gleged at it and gave me it back told me i've got into a habit of not going to bed gggrrrr blumming useless maybe he's a good Parkinson's Dr with an interest in RLS he's rubbish.

Elisse2 profile image
Elisse2 in reply to Parminter

Have to step in here. The RLS Foundation were the people who wanted to change the name to WED, and they did for a while then changed it back to RLS. RLS-UK didnt try to change the name to WED, they gave members a choice , the members chose to keep to RLS. RLS-UK s a charity would have spent 100's of pounds to change the name of the website and the forum and they paperwork, etc etc, they were actually pleased to keep to the name RLS. as all the work they had done was to get attention for RLS. As the RLS Foundation changed it back to just RLS, that would have meant RLS-UK again spending alot of money changing every back. They official name IS RLS, no one can change a name of a condition just like that,. I respect your choice to call it WED. For me personally it will always be called RLS. It might be a Micky Mouse name, you have to blame Dr Karl Ekbom for that.

gypsy49 profile image
gypsy49 in reply to Elisse2

I think it should change it's name to RMS (Restless Muscle Syndrome) lol all because it doesn't just affect the legs as everyone knows but most things you read up it mainly states it affect the legs and at night time ppfftt we all know it happens during the day too , but agree with the WED it was thought most would have difficulty explaining WED folk thinking you was getting married or something once a name sticks it sticks like you said a whole of things are involved changing a name.

gypsy49 profile image
gypsy49 in reply to Parminter

I know Insomnia go hand in hand with RLS same goes for Fibro which i have too can't take any dopamine meds only makes RLS 100 times worst , i've had RLS since i was 8 years old so keep up on the info when im looking around the net in the night .

Yep, I hear you loud and clear! Moan away, it’s good to get the emotions out.

in reply to

Quite right, I recently only joined this site because I was getting a bit desperate with insomnia. Glad I did, firstly because it's some reassurance to know that others also experience it. It's common. Secondly, because I've found out lots of new stuff. Lastly, because it does make things a bit better to get it off your chest to people who understand.

in reply to

I’m so glad you feel right at home here Manerva!!

gypsy49 profile image
gypsy49 in reply to

always good to have a moan lol not that it does much sleep wise ;)

Bee27 profile image
Bee27

I haven’t slept properly for 30 years with the RLS and insomnia. My doc has give me pregabalin (lyrica) to make the nerves in my legs less sensitive and ever since I have slept all night with the Ropinrole. Can’t believe it!

in reply to Bee27

That’s awesome news Bee27! Long may it last!

Bee27 profile image
Bee27 in reply to

Thanks I hope so too!

camperqueen profile image
camperqueen in reply to Bee27

Hello Bee

So glad you are doing so well. I have just started Lyrica and so far it’s not working, I suppose I must give it time. How much do you take, and how much Ropinirole?

Bee27 profile image
Bee27 in reply to camperqueen

I take 0.25 Ropinrole at 7pm and 75mg Lyrica and 1 mg Ropinrole and 75mg Lyricabefore I go to bed.

gypsy49 profile image
gypsy49 in reply to Bee27

Glad Repinrole worked for you :) i tried it twice now few years ago worked great for a few days then all hell broke loose I've had RLS nearly 49yrs now just getting worst with age .

Bee27 profile image
Bee27 in reply to gypsy49

I can’t think of anything to suggest. I broke my hip before Christmas and when I came off the morphine it was hell! The Ropinrole on its own wasn’t working any more, but together with pregabalin it seems to be much better and I’m getting a full nights sleep.

gypsy49 profile image
gypsy49 in reply to Bee27

There's nowt to suggest tried everything going so far just one of them things i guess , I broke my ankle few year back but darn't go to hospital scared stiff of being put in plaster and not being able to move they'd have to knock me out till it was fixed so gawd knows how you coped with a broken hip must have driven you nuts . Im glad everything is working for you and anyone else im always happy that some get some sleep at least :) wouldn't wish it on anyone wellllllllllll other than the blumming government lol

camperqueen profile image
camperqueen

I know how you feel - up most of the night, back to bed at 7.am but had to force myself to get up at 10.30 because I have someone calling, walking around in a fog trying to be normal. How long can I do this? It’s just existing, not living but must try to best it. Am changing times of meds, taking more and just NOT letting it win !

gypsy49 profile image
gypsy49 in reply to camperqueen

I'm like that more so in summer hate folk think im lazy if im not in bed by 6am then i don't go where's winter i don't care as there's no one about (live in small village) but still don't like getting up late and miss half a day that really annoys me but summer my front doors wide open which folk know round here if its shut that why i feel folk know im in bed and being a lazy moooo all in the mind most probs but thats how i feel so summer i go days without sleep or rather soon the weather warms up like it is now.

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