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Restless Legs Syndrome
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Is anybody there?

It's 2.45 am and I've been up (standing) since 10 pm. I know by the sounds of it that so many go through a lot worse but I'm finding it difficult and would love some support if anyone's there. I'm reducing pramipexole and since starting , the RL in the daytime has improved but the nights are getting progressively worse. I see my GP on 3rd Jan.

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I am so sorry to read what a tough time you are having - but very, very well done to you for starting to cut down on the pramipexole. I can only offer moral support and not practical ideas because I haven't (yet) been through augmentation and withdrawal myself. I recall from your earlier posts that you had a prescription for oxycodone for when things were really bad - have you tried it tonight or are you finding that is not helping either? From others' experience, withdrawal is going to be pretty hellish but will be worth it in the end. Not sure that helps tough when you are in the middle of yet another sleepless night...

Some ideas I have seen others on here suggest to try and take your mind off your legs or calm them in the wee small hours:

Coffee - yes, with caffeine!

Listening to white noise, music or podcasts. There's a weird one called Sleep With Me where a guy with a dreary voice talks rubbish - you can't make sense of it but in trying to you stop listening to your own mind whirring

Puzzles

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Hi Tattiana, thanks for the message. I'm still here but did manage 40 minutes sleep. I'm trying to distract and not get frustrated. My bedroom is looking so tidy and I've got a pile of things for the charity shop!

Caffeine??? I thought it was a no no.

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Oh well done, making good use of the time - that's really hard when you must be feeling exhausted.

Yes caffeine is meant to be a no no but anecdotally some have reported it helping with calming leg movements. Caffeine does something to your adenosine system and there is an emerging theory about that system having a role in RLS.

I am not much of a coffee drinker but did try it before bed a few times and it didn't stop me falling asleep. I have PLMS so it is more difficult for me to know whether leg movements are better or worse because they (mainly) happen when I am asleep. Can't say I felt any worse the next day for the coffee the night before. Could be worth a try if you are a coffee fan? As your legs are so bad you perhaps don't have much to lose by trying.

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That's true. I might just give it a go. Thank you for the tip.

I definitely find that keeping busy is far better than 'suffering' and it does mean that things get done. I've learned the hard way that pacing isn't really helpful for me so actually doing something like folding washing or sorting drawers really helps distract and endure the sleeplessness.

I do have oxycodone but only three tablets left until I see the doctor on 3rd so I'm hesitant to use any more than one per day. It's so frustrating that the prescription is only for 28 tabs and I sometimes use two a day so they always are in short supply. I long for the days of the patches when I had no RL at all!

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Well fingers crossed your doctor will understand about augmentation and come up with a plan to reduce your meds plus give you the opiates you need to get you through the changes. Only two more sleepless nights til your appointment :-)

I've just looked back at your original post and assume you are referring to fentanyl patches, and see you that you came off them because you were worried about dependency/tolerance. A view often expressed on this forum is that if we need to take any drug, including opiates, for life to control our symptoms then we are dependent on it and so does it matter?

For me fatigue and lack of energy is the worst part of this condition, so I am very impressed to hear that you have the willpower to make much better use of the sleeplessness than I do. I recently started Neupro patches and sleep even less than normal, but feel wired during the day and get lots done (practical things only as I cannot concentrate on anything involving letters or numbers) and feel much more like my old self. Until, that is, I started Trazadone and now I just want to sleep all the time so I am coming off that...I so wish there was one simple answer to this condition.

Hoping my longwinded posts are sending you to zzzzzzz land

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It's so good to chat in real time and know that someone else understands. The birds are starting to sing here so the endless night isn't so endless after all. I'm going back to bed now to try and get 40 winks... Thanks so much for your company and advice.

Good luck with your changes. I've heard about so many new drugs on this forum and only wish I could have a doctor who understands the condition. I am going to give mine some reading matter to try to encourage him to look into it more. I can't be the only person here who has them so it would benefit many.

Have a good day/night Tattiana

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I think you've identified one of the few positives of this condition - listening to birdsong in the peace of the early hours. Very special.

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Hello! I am so so sorry that you are having a Hellish time. It does end; I can safely promise that. I augmented on Pramipexole for most of 2015 (don't want to worry you about the timeline here since everyone has a different one) and it was Hell on Earth.

I'm on the go right now but please, tell me all of your concerns and I will see if I can help in any way. (And I mean ALL concerns: ex. your heart giving out. This got to be a VERY REAL concern for me. I had more days than I care to remember when I was actually expecting my heart to just stop beating -- the time my heart would stop beating and I would welcome it because it would mean the end of my torture).

My inbox is always open as well.

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Hi and thank you for your kindness and compassion. A little real sympathy can go a long way in the middle of the night and I read your posts about the psychological attitude to RL and its importance. I do agree that the way we frame things makes such a difference to the way we experience them. One can be in pain but not suffering or in the same amount of pain and suffer constantly depending on ones attitude to it. Turning something on it's head like this is sometimes amazing how much more able I can be to cope. However, it is a real challenge to embrace RL as a whole whilst experiencing awful sensations and pain as well as sleep deprivation.

It looks like I'm going to get lots of opportunity to practice it!

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About that:

it took me a long time to realize that my medical team was really just trying to help me rather than hurt me. I felt hurt for a long time during this past year, feeling very misunderstood and lonely. It was a painful journey and was one I would not have been able to tolerate at all if it had happened back in 2015. Now that I am in a better place with the RLS I can better embrace the idea of a psychological role.

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I've talked to my daughter and she said the concept is known as secondary suffering. The first is the actual problem i.e. legs, the second is the emotional/psychological one i.e. how we feel about the problem. Of course we know that stress can trigger or exacerbate RL so if we stress about them as they happen, it may well make them worse. I have cried in frustration and despair many times so it's a important lesson for me to learn.

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You poor love. Coming off mirapexin is the worst but so worth it. I don't think anyone regrets it in the long term. You are taking back control.

I second Tattiana's suggestion of caffeine and - yet another apparent no no - have also found relief chewing nicotine gum on the strength of a recommendation on here. I'm not sure it would be effective against the severe symptoms experienced while withdrawing from pramipexole but worth a try. I would also endorse Tattiana's suggestion of puzzles. I find 20 minutes of a very distracting activity (for me it's online chess - paper puzzles such as sudoku are not sufficiently absorbing - but I suspect any sort of computer game would work) can afford as much as two hours of symptom free sleep. A series of gentle yoga stretches can also help - again for me 20 minutes of stretching usually affords about 2 hours of relief from symptoms - but again I'm not wholly sure they will be effective during mirapexin withdrawal. They are at least soothing while you are doing them however.

Thinking of you and wishing you strength. Withdrawing from mirapexin was the hardest thing I ever did but am so glad I did it. I also now know that I could withstand a degree of torture - a piece of information about myself which I could wish not to have had the need to gain!

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Thanks for the encouragement. It's really wonderful knowing there are people who know what it's like. I've tried and exercise bike and sometimes it works and others it doesn't. I find the best thing is to actually DO something which is useful thus relieving the mental 'suffering' of RL and having something to show for the time. Isn't it weird how RL can just 'turn off' and my whole body feels different- and brain!

Will get some nicotine gum and try that as well. I did get 2 hours from 5 -7 am but I'm totally dopy now and feeling quite spacey. Do you recommend trying a nap in the daytime to help or is it better to wear out? Not that that seems to work. I can be so tired I think I'll fall asleep standing up and still get legs and have to get up again.

I'm wondering how receptive my GP is going to be but I really have to do something to change all this and need some extra support while going off the pramipexole. Time will tell.

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Take sleep whenever you can. Definitely nap if legs will allow. Lack of sleep will exacerbate symptoms and delay recovery from the withdrawal process. We are all with you.

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Have you tried Kratom? I went through augmentation from pramipexole this time last year so I know how hard it is. I now take kratom and it usually gives me about 4 hours sleep. I limit it to two or three times a week as otherwise, I fear my brain will get used to it and then I'll have nothing again. 2018 was much better for me than previous years (when I was on mirapexin) and I put it down to the knowledge that kratom can be taken when I really need it. You should be able to take it every day if you'r augmenting; there are plenty of posts on this forum on this so take a look. some people seem to take it every day.

best of luck.

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I've never heard of it before this week in these posts but I will ask my GP at the end of the week. Thank you.

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you will need to check first before mentioning it to your doctor (plenty of info if you google it) as in some states it is not permitted.

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Thanks for the tip... :)

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I started taking Kratom about 6 months ago, and for a while I thought it was the silver bullet. A small dose (1/2 tsp powder) enough to stop my evening symptoms for about 4 or 5 hours . But after 3 mos I had to double it, because my symptoms worsened. I didn't think I was augmenting, but after discontinuing K the symptoms greatly improved. After waiting 3 or 4 weeks I started using K on an occasional basis (once/wk) and found it to be effective w/o the augmentation.

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I find that after a while almost every effective treatment needs to be increased. I suspect that this is because the brain, where the genesis of our rls problems occurs, is elastic and finds ways around all forms of corrective treatment. I have found Kratom very helpful but, like you, I need to take breaks from it. In my experience, keeping treatment drugs dose as low as possibly (slightly lower than affords full relief) and taking occasional drug holidays helps to prolong the useful life of any effective regime.

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neural plasticity is a wonderful thing but somehow if that is the case, it's working against us here... I'll take the advice about drug holidays too. Thank you.

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I will keep that in mind when I start any new drug from now one. I wish I'd know all this before! :)

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And now it's getting toward bedtime again and I'm dreading it and yet trying not to get stressed about it and take it as it comes. I'm so tired and it's horrible knowing I could be up as much tonight. I must try to remember that NOW is what counts and to try to predict the future only takes away the experience of now.

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i take the same thing with gabapentin nothing works i even get it up in my arms living with this rls is hell i wish there was a cure . the only way i can make it stop it by numbing my legs like sleeping either indian style sitting up or laying a weird way to make myleg fall asleep

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You have my full sympathy. I had it in my arms about three times and it was so much worse than in my legs. I just couldn't relieve it at all and it was torturous. I think we will all join you in wishing for a cure!

I can't stay /sitting down at all if my legs are bad but you seem to have been very inventive about finding what works. Even when I meditate, I have to stand up or walk around otherwise I'd be totally 'in my legs' not in (or out) of my mind/heart. The worst torture of all is when on a plane landing and taking off after a long flight. It seems to set them off, maybe the change in pressure? Being strapped in an totally unable to move really IS hell. Do other people have that problem at all?

Also, as an aside, has anyone had problems with foot reflexology? I was given a voucher for one for my birthday a few years ago and I lasted abjout 4 minutes. It triggered my legs into such a state I couldn't bear it. Such a shame. Anyone else had that experience?

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omg yes totally i cant even have the slightest touch on my feet cuz it will set it off also when i was about to have my c section i was already numbed up but my legsssss where still going crazy i kept feeling it even tough i couldnt move so i started yelling at my doc like dont cut me open yet i feel my legs and so he started poking my legs and im like i dont feel that but i feel the tingling hell from rls omg it was awful i have tried everything i even smoked pot i still felt the dam thing in slow motion which was worst .

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That's a really interesting observation... to have an epidural and STILL feel your RL! It means something about how they 'work' but I'm not sure what. How did you cope? I had surgery on my big toe and was terrified that I would have to deal with RL without being able to stand- for some unknown reason, I went for over 8 weeks without RL and it was only later that I started suffering from them again. I have no idea why? I was on quite heavy pain meds - endone in the beginning but not for more than two weeks so then onto tramadol again.

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they had to give me stronger meds it was so awful . i think rls is all in our nerves have you ever done a sleep study my doc just sent me to do one. theres not enough research for rls or awareness

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I did a sleep study to diagnose sleep apnoea but there was no comment about RL. I agree, there is definitely a need to research RLs and find out actually what the cause is and then we might be able to target the problem with more accuracy. It seems that currently we're all in the dark just borrowing and trialling ideas that have worked for others without much idea of what the actual pathology of the disease is.

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My go prescribed follicle for me I used to be like you now I sleep like a baby and because I sleep at night I am able to cope better during the. day talk to your go and ask if you can try it

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Hi, Lizzie, what do you mean by "follicle"? Is that a spelling error?

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Hi resrlesstoz,

You’re doing so well, Pramipexole, is the worst of worst to withdraw from .

Just a simple thing to try , & help the jerking & pain in your muscles, sweet almond oil , masseuses use it as the carrier oil when they carry out massage.

Massage it into the jerking & painful parts , hopefully it will give you alittle relief, nice warm feeling, & not to expensive to buy.

In my view better than spraying on sticky magnesium oil; I found the sweet almond oil a lot better, though I do take magnesium 350mg once a day my mouth.

Hopefully the withdrawal side effects will gradually subside, but it takes time. Best wishes Tim61.

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I'll add almond oil to my list of things to buy, thank you. I also tried magnesium oil spray and it made my skin sting so much it triggered my legs!!!

Thanks for your encouragement. I will keep going. I was going to decrease a lot faster than I am but with all the advice I've read, it seems slow and sure is the way to go.

I don't now know if two nights ago was the withdrawal as last night apart from an hour when I was standing up and tidying my bedroom drawers, I slept really well. I now wonder if the olives in a salad that my friend made for our lunch on Sunday - without any foods that I know I can't have, made a difference. Any ideas? It could have been the salt but I really don't know. I certainly shan't be having any more any time soon. I can't work it out... at least I'm not so anxious about sleeping tonight.

I've decrease one tablet as of tonight- I shan't take any just before bed but took my teatime one. Tomorrow I shall reduce that one slightly.

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Hi restlesstoz,

You’re right to listen to people’s experiences, slow & sure is definitely the way to go, & don’t expect miracles when you’ve stopped taking them, it will take a period of time , before your body becomes balanced again , & re builds its own naturally supply of Dopamine. Best wishes for the new year . Tim61.

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So sorry to read how bad it has been for you. My RLS got progressively worse when I was prescribed Sertraline. I was rarely sleeping more than 2 hours a night and like you, was sleepwalking through the days. Now I’m on Citalopram, things are much better for me - although I do still twitch.

I tend to read when I go bed and that distracts me. Computers and backlit screens are more likely to increase sleeplessness and I don’t use my phone or computer late at night.

I also take a magnesium supplement - when I remember to, and zinc. I don’t know what “follicle” is either. Maybe folic acid?

Good luck x

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Another drug to research that I've never heard of. I too read in bed but if my legs are bad, I simply can't and have even been known to stand up reading. It doesn't really work though and to DO something is more effective for my. LIke last night, tidying drawers.

I don't use the computer but if I do, like now, I close my eyes while typing as well as having installed a program to reduce the blue light once the sun goes down. The screen is currently a bit yellowy pink and there's no blue in anything. Very weird but at least I can use it for a while when I've been too busy all day to log on.

I also take magnesium and have added folic acid to my shopping list. I'm prepared to try anything! Thanks Redlegs.

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At least you now know you're not alone! I'm withdrawing from Ropinirole - finished taking it 11 days ago and currently coping with Oxycodone - usually taking 5mg before bed and another 5mg half way through the night (the long-release doesn't work for me). I've cut out the codeine the past two nights.

Things that help in the evening (which is when I tend to get it in the arms as well as the legs and can't keep my eyes open to do anything but not able to sleep) are a caffeinated coffee (and I never touch caffeine normally) and a bath as hot as I can stand it for about half an hour. Each have either helped or, at least, not aggravated things. I've also stood doing a difficult jigsaw puzzle for an hour or more as reading and even working the computer aren't distracting enough once it really 'kicks in'

I start taking Pregabalin tomorrow night in the hope that it will work instead of Ropinirole and that it means I can come off the oxycodone (an opiate).

It is obviously being a long haul for you but do keep going as it will be worth it in the end.

all the best,

RosieRow

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Will try to get my doctor to give me enough medication so that I can actually use it when I need it not have to 'save it up' so I don't run out. Some more info to give him to read.

Next time I will give caffeinated coffee a try. as well and I'm a strong believer in a hot bath. I sometimes squeal when I get in it's so hot. It most usually works though on occasion, I'm out in a few minutes. If it's going to work it will be in ther first minute not after that. It's a bit more difficult when the temperature is 30 degrees like it has been, to feel like getting into a hot bath, but I have done it. Desperation will overcome a lot of obstacles.

Good luck with the pregabalin. I tired it a few years ago but now am back on gabapentin- I made an error when writing my first post. The pregabalin made me retain fluid to such an extent the doctor thought it was best to abort the trial. I wish I could decrease the dose of gabapentin I'm on but will wait till my legs are under control0if they ever are.

Thanks for the encouragement and I hope all goes well for you.

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I am with you. It's 2:45 am and I have been standing, or walking around the dining room table or lying on the couch but flipping my position over and and over. I sometimes soak in a hot bath once or twice during the night just for a change of pace. I am exhausted and dread the nights because they seem to be endless. I am still searching for a solution that does not include pramipexole or mirapex and here's why:

I was on pramipexole for years and it worked moderately well; however, one of its rare but serious side effects is somnolence that may occur during the course of your everyday life activities. In my case my I was driving and went from being totally active and alert to sleeping. I crashed my car into a tree and never even touched the brakes. I had fallen totally into a deep sleep at the wheel. Things could have turned out very differently for me so I know that I am lucky to be alive (car was totaled beyond recognition). Anyway, I weened from Mirapex and have basically been awake ever since. It is a living nightmare. I long to sleep like a normal person where you actually lie down in your bed, fall asleep and awaken 7 or 8 hours later feeling rested and ready for the next day.

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I cannot even imagine what you go through so won't insult you with 'I know just how you feel' because I don't. The nights do seem endless and I can relate to going round and round the table- I've spent hours going round the clothes line in the dark! and round the bedroom- I live in a small flat and if I go into the kitchen or living room, I wake my daughter who has severe OCD and eating disorder so I don't want to wake her to her living hell too!

How do medical companies convince the doctors of the 'safety' of these drugs when so many have unbelievable side effects. You say 'lucky to be alive' and I hope that your daytime life has some joy in it.

I guess you are doing all the non-medical things for RL that I've come across on these posts. I'm amazed how diet plays such a roll as I was always dismissive of things like sugar (I was addicted and so very against the idea that it could affect my legs, how wrong I was) and gluten until by chance I left it out of my diet (none in the cupboard) and found a period totally untroubled by RL! I've just bought folic acid and have upped the iron intake before bed. Off to the doctor this morning to discuss meds.

Good luck to you with your insomnia. I can only feel total admiration for the fact that you are still here talking about it! My heart goes out to all of us with this disease.

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