Magic?: Well now here's a thing! After... - Restless Legs Syn...

Restless Legs Syndrome

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Magic?

Eileenk profile image
21 Replies

Well now here's a thing! After ten days my legs and hip have finally stopped aching. RLS has calmed down tonight as well. I'm soooo happy not to have any pain 24/7. i almost forgot what it was like to feel normal!! It does make me wonder what is going on though, to have it die down like that...maybe because I went back on HRT which I'm suppose to be reducing but after reading horror stories of what happens when you do I panicked and went back up to my usual,dosage. This problem started around the time I was reducing my meds so can't help,but think it was that that set it all of?

You'd think I'd be able to sleep now but 've been so sleep deprived ...my sleep pattern is non existent ( it's now 3:30 AM)!!

How do others cope with having to get up and do a full day's work after a bad night?

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Eileenk profile image
Eileenk
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21 Replies
Annie55406 profile image
Annie55406

Well, God bless you. I hope your pain continues to subside. Just be very careful and take it easy. I don't know what else to say, but I am SO HAPPY FOR YOU that this break from continual pain has happened for you. Please keep us informed on how you are doing.

YOU GO GIRL !

Annie

Eileenk profile image
Eileenk in reply toAnnie55406

Thanks Annie...just have to get my RLS under control which isn't letting me get more than an hour or so sleep per night...thought id be able to get some tonight with not having the pain, but no such luck!

Annie55406 profile image
Annie55406 in reply toEileenk

No luck ? Keep in your sleepy mind : p-e-a-c-e , s-o-f-t-n-e-s-s ,

t-r-a-n-q-u-i-l-i-t-y , angel wings,

safety, floating, whispering,

gentleness, .

Repeat these tranquil words in your mind, connecting them with everyday examples of things which REMIND you of these words. You

will start to feel relaxed and confident while you do this .

Soon, you will feel your eyelids close in sweet repose. You will then

achieve sweet S - L - U - M - B - E - R. Gently you will give your tired body

up to SLUMBER . Zzzzzz, zzzzz, zzzzz, z

z

z

z

z !!

Sleep tight, feel that marvelous relaxation that slumber brings !

S - L - E - E - P....

Eileenk profile image
Eileenk in reply toAnnie55406

How lovley, Annie. Thank you....

Annie55406 profile image
Annie55406 in reply toEileenk

Hello for the final time tonight !

I am curious if my Relaxing Mantra helped you enter the Sleep Mode with more ease. If it didn't make any difference, don't

be afraid to tell me. It was just something different I wanted

to try and help you with. Just tell me if it did or did NOT

make a difference for you. If it didn't you won't offend me.

Write me tomorrow on what happened.

Annie

Eileenk profile image
Eileenk in reply toAnnie55406

I'm trying it out....it's like an app that I have which I listen to when my brain is working overtime lol!! Thanks though....that was nice of you!

beady3 profile image
beady3

Well Eileenk I am so pleased for you ,I know just how you feel,because after years and years of pain no sleep I am like you I take Tramodol you want to tell everyone don't you pain free now you can go to functions and join in Beady 3 keep intouch now and again it's nice to know how everyone is doing x

Pain for that long? Weird weather pattern that caused it? maybe or maybe

your back was out and you finally popped it in place when you turned over?

Who knows, but I am glad that it's better. =) Oh, getting through the workday

after being up all night. No good answer. Caffeine will keep you up later. So

many people have a delayed caffeine reaction. By now you must be home. I

am 6 hours behind you in Wisconsin, USA. lol I hope that you sleep longer

tonight and sleep deeper. Will Talk more to you about Neuropathy if you want

to. Lyrica was my saving grace. I had a reaction to it so it had to ge taken

away. Gabapentin works too but you have to take more of it to equal Lyrica.

I needed oxycodone and a salve called lidocaine. Lets talk another time. xXK

connie50 profile image
connie50 in reply to

HI yikes just come back from seeing my neuro he has put me on oxycodone but I am very reluctant to take it,don't no why when I fetched it from the chemist I felt like a criminal they told me that it was a controlled drug made me sign the prescription twice at the moment I'm taking Mirapex 2 tablets at night but all it does is makes me very sleepy in bed for 9.0pm then wake up at 2.0 in the morning no way can I get back to sleep, I told the neuro I have augmentation so told me to up my dose when I told him this is no good it makes it worst he decided to put me on oxycodone,

in reply toconnie50

In the states over here, we have to sign and show ID for the purchase of a decongestant because it is used to make Meth which is an injectible *in

a vein" drug that has no purpose but to make you high. Even old people

who walk with a cane are carded and that information is stored for the

governments use to go arrest people that buy too much. Old Grandmas

have been arrested for buying it for themselves and their husbands

severe allergies to unplug their nose so they can breathe.. I buy it on

occasion, my husband uses it daily...so we have to take turns having our

license scanned and booked for the government...lol.. Talk about feeling

criminal.. also pain clinics were busted for handing out the medicines to

patients who don't deserve to have it.. they lie to get it and then sell it

on the streets.. so the feds cracked down on even the innocent like you,

like me who go in to buy it... The pharmacist has to keep records and

send your prescription record to the doctors now.. so it's a pain in the

butt.. I asked loudly last time I was in why I get looked at like that.. and

the pharmacist said that it's a special order that they have to break from

to keep records for the feds and for the doctors who prescribe them..

all require paper scripts now.. it's a lot of work to file it all and keep

the records, Connie.. and that's the only reason.. plus they have to

decide if they know you well enough to not scan your license...or ask

for additional ID.. They need to make the same judgement as the doctor

does or they will get busted for irresponsible dispensing.. the FEDS and

bad apples out there who abuse drugs make it hard for all of us.. XX K

in reply toconnie50

Connie, I know it can be a little scarey when you get a prescription for a med you haven't tried before especially with something like an opiate.I was the same when I first got prescribed morphine.I have to double sign but now you even have to do that with Tramadol.The chemists shop I use are very good and discreet, when they bring out the meds they just pass the form over for me to sign.You will get used to it, besides its nothing to be ashamed of you have been suffering long enough and now need a bit more help I am sure no one in the chemist meant to make you feel like a criminal they just had to explain why you have to double sign, dont worry about it they will be doing that all day.Hope they work for you, let us know how you go on hugs..kim x

Eileenk profile image
Eileenk in reply to

Hi Yikes

Nope! Back is fine....and no wierd weather patterns either, just the usual scottish weather for this time of year!! Tell me more about Neuropathy, and what

Annie55406 profile image
Annie55406 in reply toEileenk

Scottish !! Did I see correctly that you are of Scottish descent ?!

Excuse my getting off-topic here, but my grandparents were from Scotland. That fact has whetted my appetite to learn any and ALL things

that are SCOTTISH ,

Would you tell me what part of Scotland you are from ?

One of my grandparents was from Dundee and the other one was from

Glasgow. (. Shame on my spelling, but I forget just how one spells

Glasgow ). I have actually been to Scotland to visit relatives there.

Would you RSVP on this note ?

Thanks !

Annie 55406. Oh ..... I just LOVE Scotland !

Annie55406 profile image
Annie55406 in reply toAnnie55406

Elieen,

If you respond to me on the topic of Scotland, could you tell me how to write notes off-topic so they are going just to YOU, and not to the whole group here. I don't want to get anyone else off- topic.

Do you know how to write private notes ?

Sincerely,

Annie55406

Eileenk profile image
Eileenk in reply toAnnie55406

Sent you a message!

Eileenk profile image
Eileenk in reply to

Sorry...still getting used to the buttons!! Was going to say Lyrica...

Seems like you are on a lot of meds. I've never heard of most of them! I really don't want to go down the mix meds route. My GP isn't all that clued up about RLS so I think I would end up taking meds, stopping, starting another etc....anything I have tried has made me feel really sick...

in reply toEileenk

I'm on enough medicine to kill the pain of neuropathy 100% if I need to.

My magic formula consists of 3 drugs.

Lyrica *approved for neuropathy and rls *everyday use

Oxycodone *medium grade pain pill dose *as needed

Lidocaine cream. *numbs the feet like going to the dentist feel

I cannot have less than that or I cannot walk on my feet.

They burn, feel like they are getting crushed..Like I am

standing in a pot of boiling water at times and they ache..

it's all neuropathy and I went down the road in less than one

years time. I am going to an internalist to find out why this

happened and to see if there is anything to stop it. Generally

it's on the tops of my feet more than at the bottom.. hard to

believe that pain is what I feel when my feet are so numb that

I could kick a metal table post and not feel it at all. It's not from

being diabetic, nor is it from hereditary.. we do not know the reason

at this time. When I get RLS on top of neuropathy- it makes my

life a living hell. The neuropathy is so severe that I simply cannot

concentrate on anything else.. the RLS does that to a certain

degree too. I am becoming recluse over this. If I use the formula

above, I can get away with much, much, much relief.. 100%

relief.. and we do what we need to in order to survive.. staying

off of my feet and living in agony will end my life soon as well...

the heart needs exercise.. and with that formula -- I can survive

easily. Without pain. =)

Now that Lyrica caused problems for me (Gabapentin did too) so

I am taking cymbalta..I am giving it time to work. It takes a good

5 weeks to feel the effects. I am just a tiny bit miserable- not

feeling like I did on Lyrica.. I know that it will work for me.

Good Luck and I pray that you find your own formula to be

as comfortable as you can be. =)

Eileenk profile image
Eileenk in reply to

Thanks Yikes2

I'm sad that you're going through such a rough time, You always seem to be the one who is giving advice/support. I really hope that the symbalata works for you. Youre right , we do what we need to do in order to survive, and whatever works is what we'll do just to feel normal again.

Glad you are feeling much better Eileen , always great to hear some good news! About the inability to sleep even when RLS/pain has calmed down, I am exactly the same often awake at 3am.My GP thinks years and years of broken nights has thrown my sleep pattern out causind delayed sleep phase disorder.As I don't work now I am lucky enough to be able to sleep in some mornings but if I do havevto be up early its a problem. I also have Graves disease which has insomnia as one of its symptoms although I wouldn't say I have insomnia I just sleep later hours than is considered normal.At the moment I am bringing forward the time I actually move off the sofa and get into bed forward by 5 minutes a day.This doesn't sound much but its 35 mins a week .I have managed to move bedtime forward by an hour up to now and am dropping off ok so maybe some of it in my case is habit.I will probably always be a night owl and I would be happy getting to sleep by 1 am .This is my aim . However when you havecto be up early for work this may be too late.Is there any chance of you starting work a bit later? Probably not .I try not to make arrangements for mornings but obviously sometimes it is unavoidable and then I feel shattered all day and with me the more tired I am the worse my RLS is so leads to a vicious circle! Hope youre good spell continues! X

Eileenk profile image
Eileenk in reply to

Yep! That all sounds familiar. I haven't had a proper sleep pattern for years. I went through a program called Sleepio (sleepio.co.uk) which really helped but that was when my RLS was few and far between.

And you're right, I think the more tired you are the worse your rls is. That seems to be the case with me at the moment. At least I'm pain free which is fab!

As I'm not currently taking anything for rls, my legs are pretty bad right now, so it looks like I might not have any choice but to go back on meds if I'm ever going to get some sleep, just don't know what?!! There seems to be so many different ones, then there are mixtures of others....it freaks me out so I end up not taking anything!!! I know more than my GP ( lovley as she is) by chatting on this forum ( with the exception about which meds are the best for me)!!!

Just needing a good, whole unit erupted nights sleep....has anyone ever taken Stilnox, and has anyone ever ordered it online? It's the only thing that ever helped me get to sleep back in the day, but I can't get it over here...

apologies for ranting...!!!

annakalia profile image
annakalia

Well being a full time mum i dont go to sleep i see the chidren off on the school bus give me 14 month old breakfast then dinner he does down for 30 min nap and so do i. then do the whole day/ night again but i have to say my patner has been brill and if i get more that 2 bad nights he watches my 14 month old whiel i try to get sleep during the day.

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