Hello this is my first post - my RSL was bad 30 years ago in pregnancy and I've had it mild over the years driving me mad at times and occasional waking up. 2 years ago it started very bad with being restless every evening and not sleeping at night. Doctor put me on 0.5mg ropinirole on an evening this worked for a while then I stopped sleeping again as rsl woke me around 4.30am so doctor increased to another 0.5mg before bed.I haven't now slept for 8 months up at 2.30am struggling to get back to sleep legs bad and also in shoulders at times. Rsl starts earlier in the day and I wake up with it in a morning. I do take an additional ropinirole sometimes in the night if desperate. My doctor wants to increase my dose but I think the tablets are making it worse although I can't do without them now. I went through a lot if stress 8 minths ago as well so doctor gave me citalopram 10mg and 1 month ago increased this to 20mg as I didn't want to increase ropinirole. Not worked still awake in middle of the night. My Iron is 73 my doctor said this is ok but I started taking iron 1 month ago also take b12 vit d3 and magnesium. Could I have your thoughts please. Sorry for long post. Thank You
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VJ29
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The iron should be gentle iron taken on an empty stomach in the evening, from what I can tell I think those levels are a tad low - RLS sufferers can have decent blood level of Iron but cannot store it properly in the brain so we can read OK with blood tests but still not have enough.
If I were you I'd look to change the drugs, I think opioids are a much better drug.
Has anything changed recently? Have you started any new drugs? A lot of antidepressants and anti histamines cause a worsening of symptoms. Hang on just read your post again and I would say Citalopram is the culprit, can you link the increase in symptoms with that?
Check out info here:
rlshelp.org (click on treatment link on left side)
Thank you for your timely reply just been to docs she's doesn't know loads about rsl but given me Pregabalin and co- codimal to try and told me just to stop the current drugs as 1mg low dose. Here goes! I am scared as become so dependant! Will look into slow iron as well thank you.
That's not a bad replacement - Your Dr (like most) will know next to nothing so it is important that you become the expert in RLS - the Drs wont.
Diabetics are dependant on insulin and don't worry about it - why should we? Of course we are dependant on all drugs we use as we need them to control our condition like others suffering long term conditions.
The Ropinerole was making your RLS worse, you were right on that point. Its called Augmentation. lots of posts and comments on here about that. So i am happy you are going to be stopping it and not increasing it. I hope you dont experience bad withdrawals if you have just stopped it and not weaned off it. Also as has been said the Citalopram can also make RLS worse.
I have been taking Ropinrole for about 10 years and have now been on 1.25 for a long time. I take it at exactly 9.00 and go to bed at 10. Mostly it seems to work for me. If I don’t take it I don’t sleep at all. Maybe it’s augmentation, but I’ve settled on a level that works for me.
Thanks. That is the level that works for me. Any less and I feel terrible. My Mum takes the same level. It doesn’t work all the time. Sometimes I have a really horrendous night, but mostly it works. I have no intention of changing to anything else! I have suffered too much! Hope you find something that works for you.
I find Holland and Barrett Wonder Legs helpful too, but they are expensive.
like you I have been taking ropinirole for about 8 years .I take ropinirole 3 at 7:30 and try to go to bed 3 hrs later, if I wait until later I take roropinirole 3and1 togther.I agree with you , I also found something that works for me, and I will continue taking them.I have restless toes syndrome (same as RLS but it's only the toes)
Opioids are the only medication I found that works for me. I take 5 mg in the evening before bed, then a second tablet when I wake up around 1 or 2am thrashing around. Doctors hate to give them but if they work, why mess around with other drugs that cost a lot and do not work.
No apology required, we all know your pain. I have had RLS since anout puberty but undiagnosed until decades later. Ropinerol was my savior when I was in the space you describe you are in now. Augmentation sounds like your issue. My 3 year journey is too long to post. Imho, your body is trying to tell you it needse help to detox. Ck for heavy metals and cut as much processed foods and sugar from your diet as you can. Super hydrate and nourish your body as if a pro athlete. It will get worse before it gets better as your body clears toxins out. I am more disciplined than most. Under holistic neurologist care, I cut: gluten, corn dairy, soy, limit sugar to 25 gms honey daily, organic, cage free, (only clean food) and grass fed only. Took a year to see big results but inflammation started melting off immediately.
My Rls gradually decreased and I reduced my 4 mg dose all the way down to 1mg that first year.
At that point, my md put me on chelation. I was healthy enough to tolerate it. I was also doing 30% raw veg, 10 % fruit, 20% carbs, 30% animals protein diet. (Clean animal protein is powerful enough to clear heavy metals out of your system)
Year two saw marked improvement cross the board with amalgam removal pushing me to feeling much stronger.
Year three was hard. I was tired but had gotten a taste of feeling really good. I started to push too hard and cheated on nutrition. Paid DEARLY for it.
RLS research lead me to yet another controversial healing herb called Kratom. I no longer need pharma for RLS and have doubled my sleep cycles in a matter of weeks. Dare I say.....i am free.... trading pharma for herb but I see that as a win
welcome VJ29 you will find everything you need on this web site,repinarole is a D/A & you have to be very careful you don't get augmentation. Because if you do you'll know about it.im at the moment trying to reduce my repinarole (got augmentation) had it once before,(augmentation)this is the second time when you are desperate for relief you try anything. I've tried weaning of D/A,it takes a lot of courage believe me.but the members on here will help you through RLS.I was on 2/3mg of repinarole but with the help of certain members on this web site I'm weaning of it.Does your GP know anything about RLS? because most GP haven't a clue.I've had this RLS know for 10yrs I've been to see a GP a NEUROLIGIST& to be quite honest the people on this web site know more about RLS than any professionals. I know how you feel its horrible.I've been there done it but you will come through it the last time I went to see a neurologist she asked me about Melatonin,(you get pretty desperate you will try anything), but certain drugs don't always suit the same person, but you cannot buy it in England,(That's were I'm from)so I sent for some from the states. The neuro told me it was a herb, so I've put a message on here to see if anyone as tried it.Will let you know X
Thank you Connie I am struggling tonight as my gp told me to stop the D/A have been taking 1mg sometimes 1.5mg and start new meds today. I've been good with the new meds today but since 8pm I've been going through a terrible time with both legs would you take .5 of tge D/a even though I'm on new meds. I don't know what to do been like this nearly 3 hours worried I'll be up all night.
Hi vj29, sorry to say this but you may be in for a bad week or so. I reckon you augmented on the ropinirole and taper off it or not it will trouble you regardless.
The pregabalin you have been prescribed should be started slowly, say 25mg for a week then 25 twice a day for a week and so on till you find relief, which I know for some people is around 100mg. (Everybody is different). You will feel sleepy, take it slowly. Even so pregabalin takes days to start to work, so your co-codamol will have to blunt your suffering for a while. I really hope it does.
As has already been posted, the citalopram is bad for RLS.
Now for the good news - once you have got over the withdrawal I am sure you will find that your torment was worth it and pregabalin will control your RLS and help with your stress levels, and you will sleep!
raffs suggested Gentle Iron (iron bisglycinate) in the evening. I took mine with real orange juice to provide Vit C to help absorb the iron.
This is probably not the post you would have wanted, but be strong and stick with it and the future will be brighter for you. Lots of us have done it and lived to tell the tale, so can you
Thank you do much Neil 46 I have just slept for 2hours so some relief but not a lot my go has said up to 3 x .25 per day of the Pregabalin so I did take .75 yesterday as I knew already I would be bad. I'm going to order some of the recommended Iron online so holding off on taking the Ropinirole and trying to be strong. My gp is saying continue with the Citalopram I'm on 20g I' temptedto reduce to 10mg then try and stop it but worried this is too much for me all at once. What are the thoughts? Ps thanks so much again no one understands if they don't have this terrible condition do they! I only knew what meds to ask the gp for because of this group she didn't have a clue.
Well done for holging off the Ropinirole vj29. Not easy but good start!. If you click the RLS-UK button at the top of your screen you will find the main site. Clicking "Treatment" will give you lots of info that will help you.
Also, magnesium oil rubbed into the affected parts can help, as can Epsom Salt baths. Lots of posts here about Mg.
When I took 3 x 0.25 Pregabalin at once I zombified and became sedated walking if you can picture that, lol. Not good really, I lost days napping and stumbling around. My wife was horrified. however I resumed at 25mg and stuck to it and now the RLS is controlled; I just have to watch my weight and regain a healthy sleep pattern.
Next I will be looking for food-based ways to control my legs because I don't want drugs for the rest of my life.
When it comes to your RLS soon YOU will be your expert. Good Luck, great start, keep posting, we're always here...
Like you I came to this site in desperation searching the Internet for help when my neurologist clearly was making me feel much worse by increasing my Ropinerole every time I went to see him every 6 weeks. I was on Ropinerole .5 mg for a few years, with no problems, then my symptoms like yours stated to get worse, more severe, moving up into my torso, shoulders and arms--both sides. Neurologist took me from .5 Mgs to 6 mg then onto 4 Mgs Extended Release, then upped me in increments every 6 weeks until I was finally on 12 Mgs ER last January, and out of my mind with what I soon discovered from the wonderful folks on this site was augmentation.
I left my neurologist, read everything I could get my hands on about RLS, worked with my primary care doc and my pharmacist and the guidance of my friends here to titrate down over 6 months from 12 Mgs to 2 mgs, then had to go cold turkey off it the last two months--by then I couldn't stand the slow withdrawal and just wanted it over.
It took a month or two to finally get off Ropinerole. Slow iron really saved me during those months of augmentation. I took it twice a day morning and before bed with orange juice -- vitamins C is essential to help it cross the blood/brain barrier. It's called Iron Bisglycinate 28 or 25 Mgs.
Ropinerole does help many people, and some folks have no problems at all, but I was just on it too long. My GP titrated me into Lyrica (pregablin) combined with tramadol. I now feel really great. Just occasional leg vibration when I'm overtired, emotionally upset, or sitting too long.
You are fortunate to get off Ropinerole before being on it too long and on too high a dose. Be patient though, pregablin takes about 3 weeks to feel the full effects. It will increase your appetite, so get lots of fruit on hand. ; ).
HI vj29 your GP is wrong you should never ever come of D/A you should always wean yourself of them,this is what I'm talking about,GPs don't understand RLS. all they know is MEDS & some of them don't even know about them,what new meds as he/she given you,is it another D/A,You can take a painkiller like tramadol but you have to be very carful because this is very additive.at the moment I am trying to wean myself of repinarole,but last night it was horrendous I cheated & took half mg of repinarole,you are asking me a question, would I take .5 of D/A along side your new med.it just depends on what your new med is.You cannot take two D/A together, you can take D/A with painkillers like tramadol. O I wish I could help you, all I can do is advise you. You can send me a P/M anytime take care X
Thank you Connie the meds are Pregabalin 25g 3 times a day plus 30mg of co-codimal - I've lasted the night without taking my D/A was bad though with little sleep - feel like if I've done one night I might be able to to carry on without it but not sure! x
Connie 50. Melatonin is not an herb. It is a hormone produced in your pineal gland in the morning. Its production is triggered by morning sunlight and its release is triggered by darkness. Be careful with how much you take. Messing with hormones is not to be taken lightly!
In my experience, drugs usually made things worse. A few things help me:- restricting added sugar, magnesium supplements, a good carb hit an hour before bed (ie pasta or bread) and those little yoghurt drinks. I read about a study linking anxiety to poor gut bacteria and it interested me as I always think rls should be renamed "anxious leg syndrome" because it feels like your body is anxious. It definitely made a difference for me.
Hi SarahMP, Like you I am interested in the links between general health and the gut biome.
There is a lot of info on Youtube - Dr Amy Myers, Dr John Bergman, Dr Berg etc etc. And... wonder of wonders...a video on "The Calcium Lie" explaining why we are dangerously more short of the right vitamins and minerals than they were years ago.
This video (and I now have the book) backs up Dr Bergman et al. It just sounds right to me.
As everyone above has advised, you are suffering augmentation and now withdrawal. It takes about 3 weeks of very, very disturbed nights and days ti get through it. As others have said, citalopram is very bad for RLS. Try trazodone instead.
Do not be tempted to take ropinirole when you're desperate as that just prolongs the agony.
Once you're off ropinirole and citalopram, you will feel much better as the pregabalin kicks in.
Ahhhh ..... pregnancy and RLS what a killer combination that is. I am sorry but being from Australia I am unable to advise you on medication. I have been to let you by RLS for 60+ yrs with diagnosis coming at age 48. I was immediately pandrescribed madopar and Sifrol and have been
Hi vj29. I think they are levodopa and pramipexole respectively, which are on the dopamine agonist side again, like Ropinirole, so that should rule them out for you as a backward step, sorry. Pramipexole worked great for me till augmentation.
Thank you Neil I'm on my 3rd night now of the withdrawals been to bed once but no chance of sleep at the moment! I'm wondering if anyone has heard of Lansoprazole causing RSL I've been on 30mg now for quite a few years?
Yes, I was prescribed Lansoprazole for acid reflux and it sent my legs haywire. As it happens I didn't need the darn stuff in the first place because my problem, with experimenting, turned out to be gluten intolerance. Another instance of the doc only looking at a symptom instead of the bigger picture. I am learning though
It's hard work to know what's right or wrong! Rsl not now happening in the day or evening brilliant! Not holding my breath though! Still awake at night for shorter period take co- codimal and extra pregabalin managed to get back to sleep after an hour or so! Taking 100mg in total. Most of this after 8pm at night - should I space dose more? Any thoughts on this?
I have restless toes syndrome, and if I don't take my Ropinirole I'm the same way.If I go somewhere for the weekend and forget to put in my ropinirole I have the worst pain in my toes .
I take ropinirole 3 at 7:30 every night, and if I wait until later my toes drives me crazy ,they won't stop moving .I'm taking ropinirole 3 and ropinirole 1,the ropinirole 3 is for taking at night , the ropinirole 1 is for taking during the day ,because they get restless night and day .I told my Dr. that so he told me to take the ropinirole 3 at night -I take it about 3 hours before going to bed. If my toes start jumping I take a ropinirole 1 and it helps me to go back to sleep.
I couldn't deal with my restless toes ,if I didn't have my ropinirole 3and 1.
It helps knowing that other people have this , because I thought I was the only person with RLS or in my case it would be RTS(restless toes syndrome)
I hope you find something that will help you to be able to get some sleep !
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