Here I am ,it’s 2.45 am.this is my second time walking the floor tonight,RLS started in my left leg,went crazy for about 2 hours then it eased off so I went back to bed and thought ,Thank God I will get some sleep but it started in my right leg so I’m walking the bloody floor again,does this happen to anyone else? I had a good week,didn’t have alcohol,didn’t have sweet stuff,exercised,took my medication and it was great,so why the heck tonight.taking some hot milk and honey now,could be walking for a while yet.Help.
Walking the floor again: Here I am ,it... - Restless Legs Syn...
Walking the floor again
Written by
Whymelord
To view profiles and participate in discussions please or .
38 Replies
•
It's been a few hours since you posted this, and I sincerely hope it didn't last long this second time and that you're now enjoying a belated restorative sleep.
I only want to let you know: it happens. Occasionally, out of the blue and even when the (my) RLS is generally fairly well co trolled by (my) meds, it happens. A restless night with severe enough symptoms to wake me up and keep me walking the floor several times a night.
The same with the switch from one leg to the other. Usually I have symptoms predominantly in one leg, it frequently but far from always spreads to both, and the 'dominant' leg differs.
Hi,I haven't had such a bad night in a while, didn't get an hours sleep, each time I tried lying down, the bloody thing started again so I stayed downstairs till about 6 o'clock, took 2co codamol then went to bed but no luck, the awful feeling was in my upper back and arms. I'm having breakfast now but I'm so tired now, hopefully I will get a few hours shortly. Thank you for replying, it's really helpful when other sufferers just knows exactly what you're going through.
Have you started reducing the pramipexole yet? As you reduce the dose, RLS will become worse but will then settle and at that stage you can reduce again.
Manerva has given advice on how to get off pramipexole and sadly, until you’re off it and on alternative meds like pregabalin or OxyContin, the RLS will be more severe.
You could Also ask for tramadol now to try to reduce the withdrawal symptoms.
Read everything you can on augmentation and withdrawal.
Manerva covers it in most of his replies.
Hi, I haven't changed my medication yet because for some reason I've had a good couple of weeks without the rls. I followed the advice I got on here, I'm writing down all I eat and drink. I did eat a lot of white bread yesterday so I'm wondering if that's something I should stop eating. I priced the non alcoholic Seedlip wine in Holland and Barret, it is too expensive so I bought a cheeper wine, may as well drink a weak fruit juice so I'm just gonna do without.thank you for your reply.
If you’re suffering augmentation, diet modifications won’t really make much difference.
I suspect the RLS will keep flaring up. Having been in your situation I remember trying to resolve the worsening RLS and then eventually realised it was just going to keep getting worse until I got off Ropinirole. It was a terrifying thought at the time but I’m so glad I got off it and I’ll never touch another dopamine agonist again.
When you’re ready to take that step, do let us know as it’s very tough and the people on here are so helpful in supporting people getting off DAs.
There is definitely something going on with me, don't believe I've had a worse bout in a good while.my legs are still restless so this is happening since 11ih.last night. I will certainly need your help when I change medication, only hope my gp will listen and be more helpful. No energy at all now so I'm gonna rest up now.
It definitely sounds like augmentation.
I reduced my ropinirole by cutting the tablets with a pill cutter. Ask for the lowest dose in pill form ( I think it's 0.5mg but ask the pharmacist). I reduced by 0.25mg every 10 days but I think I reduced too quickly and it was horrific. Aim to reduce by 0.25mg every 3 weeks. After you reduce a dose, the RLS will flare up for several days but should then settle. Use tramadol at night, 50mg tablets, and explain to the GP that they will help you deal with the withdrawal.
When you drop the last 0.25mg the RLS will become unbearable and the 10-14 days after the last dose will be very uncomfortable with little or no sleep and constant RLS jerking and twitching- so you will need a clear diary and someone with you in the evenings.
Some very lucky people do not suffer badly but in all honesty I have to warn you it can be very difficult. Worse than heroin or crystal meth withdrawal. In the USA the experts prescribe low dose methadone or buprenorphine and that makes withdrawal much easier. Sadly, we can't get either drug in the UK so have to persuade our GPs to prescribe tramadol or oxycontin which help a little.
Pregabalin is the best alternative med after ropinirole and you can start slowly increasing the dose by 25mg every 5 days until you reach 150mg. Then, once through withdrawal, the pregabalin should start to help.
Print off as much info as possible on augmentation and withdrawal because your GP won't know much ( mine knew NOTHING) and I couldn't wait to see a RLS specialist neurologist as the waiting list was over 9 months. By the time I saw the specialist at King's College Hospital, I was off ropinirole and on Oxycontin and pregablin.
Hi,I’ve just had a conversation with one of the gps.in my surgery,I explained that the Pramapexol was doing no good and felt I’ve been on them too long so could he prescribe Gababentin as I have looked it up that I’m on this forum which has been a great help.well as soon as I said I had looked it up and mentioned augmentation,he just told me not to believe everything I read on the internet and offered me more sleeping tablets,said he would have to talk to other doctors so I should give him a call on Monday.i refused the sleeping tablets,don’t think he was too pleased with that.How or where on earth does a person go to get the proper help,I came off the phone fuming again which is not good for my blood pressure.
Hi Joolsg, I talked again with my gp and asked him to to change my pramipexole to gababentin, he said he did not believe in augmention, so he rang me today and said he would put me on ripinrole so I'm wondering if I should change or stick with the pramipexole?
Do not change to Ropinirole. It’s another DA. You will have the same problem.
You need to consider reporting your GP. Augmentation IS real. It’s clearly mentioned in the medication leaflets ( the drug companies added it about 6 years ago to avoid legal liability if we sue them). The NICE guidelines specifically mention it. Manerva has just posted the latest NICE guidelines. Print them off and send to your GP with a letter of complaint.
This is now becoming negligence.
Please now consider changing GP surgery. Where are you?
I live in Derry N. IRELAND, I couldn't believe he rang me today think he thought about the conversation we had last week and how he was soo dismissive of what I asked him which was Gababentin.im collecting my prescription tomorrow and I don't feel like talking to him again but I need to be assertive.
Here’s the Link to NICE guidelines.
cks.nice.org.uk/topics/rest...
It’s becoming clear you’re going to have to get off pramipexole on your own. I had to do the same as my GP came out with the usual crap of ‘I hope you haven’t been using Dr Google’.
I reduced the dose of Ropinirole very slowly ( but not slowly enough) and used tramadol at night. It didn’t really help much- illegal cannabis was better.
Once off the pramipexole you can then demand pregabalin. Alternatively you can print off the NICE guidelines and say you’ve had enough- pramipexole is killing you through lack of rest and he has to give you pregabalin.
You can ask for tramodol but he probably will refuse.
I honestly despair of GPs. It’s getting worse. Why can’t he even read the medication leaflets to see Augmentation is real.
I understand your frustration. I nearly assaulted my female GP when she smirked at me ‘Just drink some milk. We all get aches as we age’. I hadn’t slept for 4 nights so she was lucky I was too exhausted to launch myself across the desk.
I’m so glad I ignored her and followed the advice on here. I no longer get RLS in the day or in my arms, back and face. When I do get it at night, it’s much milder and I can usually get back to sleep within 20-30 mins.
Stay strong and avoid Ropinirole.
I’ve just looked up the leaflets for Ropinirole and pramipexole. Changed since 2016. Pramipexole doesn’t mention anything about Augmentation. Ropinirole says this:
“If your symptoms get worse
Occasionally, people taking Ropinirole find that their Restless Legs Syndrome symptoms get worse. For example, symptoms may start earlier in the day, after a shorter time at rest, or the symptoms may affect other parts of the body, such as the arms. See your doctor if this happens to you.”
This is worrying because we know it happens constantly, not occasionally, and doctors don’t know what to do.
I think I’ll be writing to the drug manufacturers again and implying legal action if they don’t change their leaflets.
neurologylive.com/view/addr...
Also print off this article and send to GP with your complaint letter.
My sympathies...sounds terrible. I use a nicotine replacement tablet and it stops the problem immediately. Good luck.
I’m not on medication (hoping my RSL wont last beyond giving birth in November) so perhaps this doesn’t apply, but I read that you had white bread yesterday and something that I have changed in my diet is no gluton. Like you said - no sugar or alcohol but also no caffeine, salt, oil or gluton. My friends have told me that my changes in diet are ‘a bit extreme’, but I think half an hour sleep each night is extreme, and the irrational thoughts I have night after night of pacing the floorboards for hours on end are extreme. It’s been almost a month since I changed my diet and on average I am getting 4-5 hours of sleep at night now.
However, I think if you’re taking other drugs too then as Jools said, it may not make such an impact.
I hope you are in a position where you can get a few hours sleep this morning.
Hi, your friends obviously don't have rls, I have this horrendous rls for so long with not much help from my gp.so I need to help myself where possible. I too think that diet can ease the symptoms so I'm gonna keep trying it.All the very best for you and baby in November, please God you're rls May go after the birth.
Oil? I've never heard that one before. All oils or just certain ones i.e. highly refined ones? What is the theory behind eliminating oil? Thanks
Hey YodaDog,
I've popped a reply below with deets about my conclusions regarding oil. Nowhere as said explicitly that cutting out oil helps, but when I was reading about inflammatory factors of foods and that avoiding inflammatory food, although in regards to RLS they don't explicitly mention oil, I believe that oil is an inflammatory so I read between the lines here. But it could just be rubbish! I thought I would try it though...Anyway, see below for some of the sources I have cited if you're interested.
X
Hi,I try to avoid all these things too but I wasn’t aware gluten should be avoided also was just wondering what type of oil do you avoid,I would use vegetable oil for cooking,it’s reall good to hear what helps other RLS sufferers.
Hey. Wheymelord and Yodadog,
I read here healthline.com/health/restl...
that "Some people report that avoiding gluten eases RLS. Gluten is a protein found in wheat, barley, and rye. It’s found in foods such as breads and baked goods, as well as in some condiments, soups, and salad dressings. There isn’t any scientific evidence that gluten causes RLS. If you feel gluten may be behind your symptoms, consider eliminating gluten for a few weeks to see if your symptoms improve."
Although there's no scientific evidence that Gluton causes RLS, I was willing to try eliminating it (even though I truly love bread!).
Here:
rlcure.com/daily-intake-for...
I read about the Inflammation Factor:
rlcure.com/the-inflammation...
I know from studying diet and nutrition that oil is an inflammatory that should be avoided, especially for arthritic patients. I don't cook with oil, I usually use a bit of vegetable stock (unsalted now - as a result of cutting salt out because of RLS) if something needs basting, and a small amount of water when I sautés things (to stop it sticking to the pan). It seemed like a bit of a no-brainer, when I was reading about the Inflammation Factor, even though all the research seems to mention is not eating fried food. A lot of people use oil in their daily lives for cooking or on salads. I haven't found it hard to eliminate, and I get a good intake of oil from whole foods - things like nuts and seeds, olives (not stored in olive oil!) and avocado. It's just not processed and so therefore it's harder to over-do it (there are only so many olives, nuts and seeds a person can eat! Whereas it's very easy to overeat on oil. It takes about 20 olives to make a tablespoon of olive oil, which most people would easily use in a day of cooking).
I dunno, it might all be baloney! But I have to say, I got another 5.5 hours of sleep last night, so I'm not complaining!!
I'm not sure which of the things I am trying -
Stretching
Roller
Cold compress on my feet at night
Bath
Magnesium
Iron supplements
Diet changes
But right about now, so long as I get more than half an hour of sleep, a night, I will keep it all up!! It's a bit of a job though and my bedtime routine takes a while!!
This forum has been SUCH a help and support to me. I really hope you find something that works for you.
Sophie x
Hi, thank you for your reply, I know that it's all trial and error but it's all certainly worth trying. I too love bread, it's just an easy food to use every day but I'm going to give all this a try as well as seeing my gp about changing my medication. I agree about this forum, the fact we can empathise is a help in itself.
Yes this happen to me most days rls in one leg when it start relaxing then it start in other leg then cocodamol is my answer
Cocodamol is an opiate, its a tablet with a mixture of codeine and paracetamol, it can be bought over the counter but your gp. Can prescribe a stronger dose, I find it helpful as I believe it does dull the nervous system as well as ease pain.
I feel your rage. The ignorance of doctors and neurologists is utterly staggering. I had exactly the same reaction.
I suggest you compose a lengthy letter setting out clearly the problem with pramipexole and the links to augmentation and DAWS. It’s much harder to dismiss you when your complaint is set out clearly and in your files.
Manerva has all the relevant links in his replies to all people suffering augmentation ( and there are at least 4 a week!).
The medication leaflets for
Pramipexole and Ropinirole actually have a paragraph warning about augmentation so your doctor can just read that.
Ask for a referral to a neurologist ( can be a waste of time unless the neurologist has a special interest in RLS) but your GP is clearly determined to be an idiot.
I feel your pain.
I had to withdraw from Ropinirole with very little help from my GP who was worse than yours. Told me not to use ‘Dr Google’ and just drink milk.
She was lucky I managed to stay in control!
It feels like that most days. I have not been able to work out what the trigger is. I had the same last night. Left leg then right. After 45 years of it i wish they would sort somthing out that works
Hi, yes I was exactly the same last night, I'm doing all that I think is right but seems there is no light at the end of the tunnel and especially when GPS dismiss you as if you're making it up, wish I could say I've found the trigger but I don't believe there is any particular thing. At least this forum helps by being able to talk to fellow sufferers.
That's the story of my nights every night. I don't find any tabs help or have side effects so am taking nothing - never took DA's. I live in hope! Currently hoping to get Ferritin as high as I possibly can. Am chronically sleep deprived. I never just pace if at all possible though usually have done a great deal of thrashing about while 1/4 asleep. I stand and do puzzles and crosswords, have baths and the occasional cup of coffee which does help the restlessness to wear off but too much and can't sleep anyway.
Oh it's all a real b......r - sorry if such language should not be on this site!
Whymelord• in reply to
Hi,how on earth do you manage without any type of medication although what I'm taking does no good whatsoever. I just dread going to bed as I know what usually lies ahead of me. I talked to my gp this morning and when I came off the phone I just screamed and cursed and cried, no one was here but me so I just let rip. Good luck with your ferritin.
• in reply toWhymelord
I'm lucky in some ways as I don't dread going to bed but sort of irrationally think i'll sleep and then somehow get through the night. I've had enough side effects from Pregabalin that I feel better off it. I don't fancy the short term gain of eg a DA for the longer term issue of trying to get off it again. I dread becoming addicted to an opiate, even if I could persuade someone to give me one. I think what I have now is bad enough without adding anything else. . And as you say most things seem to not work well. And as Elisse says I nap during the day. So now it's 11.15, I can feel it all starting, back and arms too, so I've had a coffee about an hour ago. I'm just off to do some standing puzzles and hope for some miracle soon. No one who doesn't have it to this extent, as you all know, gets this at all do they? I had an banana a few hours ago and some plums - maybe both a mistake
Whymelord• in reply to
Hi,your very brave for keeping off medications, it's 12.40am,u went to bed about an hour ago then it started in my back and arms, tried to settle down hoping it wouldn't last long but I'm downstairs getting some hot milk and honey. Your right, unless you have this sodding thing you could never understand.
• in reply toWhymelord
It's not bravery. It's the best of a bad job really. I'm just back in bed after a bath, so far so good.
• in reply to
I dont know how you are surviving taking no meds at all. I went 14 months without meds a few years ago and my RLS wasnt as severe as it is now, and i was a mess , i kept crying, my mental state wasnt good. I eventually went to the doctors after hearing about the Neupro Patch just been approved for RLS. Since then and before i tried the patch all meds i struggle with, all give me side effects, i can now only take a very low dose of Tramacet and i break up a pramipexole , cant take a whole one. I dont sleep well every night. i am pacing every night, i do get SOME sleep and i do nap in the day most days. But i cant see me going back to no meds at all.
• in reply to
Hi Elisse, thanks for responding. I've replied to Whymelord above and really I'd say the same to you. Lets all let out a silent scream and give each other a group hug - at least knowing that all you out there understand
• in reply to
I am up for the second time been pacing drinking coffee. But I have had a couple of short sleep about an hr each. Alison I don't know of any RLSer who has become a addict from taking a opiate for their RLS only if you have been a addict would I say don't take any opiates or if you had a addictive personality. I wish your doctor could prescribe a low dose of a opiate for you it would at least give you some relief at night what I said I take is not perfect snd the little bit of prami helps and I can't see me augmenting on it I don't take enough for that to happen. I am worried for your overall mental health and your body going without any sleep sleep deprivation can lead to other health issues. x
• in reply to
Hi Elisse, I do get short sleeps in between like you do, though far from ideal. yes, sleep deprivation is foul! I'm just scared of opiate addiction, Am not a previous addict and don't have an addictive personality but I think it could be the substance not the person - who knows. I think i'll just wait for the next miracle! Thank you for your concern
Not what you're looking for?
You may also like...
Going through hell again
Hi everyone it's been a long time since I posted. Things were going pretty good. I've been keeping...
RLS
Has anyone with RLS experienced there legs and feet being very hot at times especially in bed....
Any one awake
Is there anyone walking the floor ,its 2.30 just had a bath leg playing up ,we had visitors and I...
Sleep
Hi folks is there anyone walking the floor going mad , after all the medication taken not a bit of...
Walking in the night.
By chance I found the oddest way of walking off RLS.
I was given an old hospital screen, and...
Related Posts
Breakthrough on middle of the night walking!
New member 🙂
Is this RLS or...stenosis? I have difficulty walking and a little bit of shaky hands after movement.
RLS Requip (the devil med) and then Gabapentin(my savior)
The cure to my sons restless legModeration team
KaarinaAdministrator
