I've just joined this forum in the hope that someone has some answers as I think I'm going to go crazy soon!
Have pretty much had rls all my life but not very bad until I started taking Citalopram for depression just over three years ago. At first I tried to put up with it but after several months spoke to my doc and was prescribed Ropinirole. The Rop made me have to leap out of bed to throw up! I gave it up after a month but rls had eased off so all ok.
Fast forward to approx 4 months ago - still on Citalopram and the rls had been getting so bad again that I went back to doc (different doc, I moved house in that time). Doc refused to prescribe Rop but shifted me from Citalopram to Amitriptyline saying that would sort me out - also did blood test and prescribed Folic Acid. I didn't know Ami makes rls worse, but surely doc should have? Anyway, had some of my worst nights ever before seeing a different doc at the surgery. She took me off the Ami, put me back on Cit and prescribed Rop again. Yay? No. I had forgotten how bad the nausea was on the Rop. I just can't take it. I know I won't throw up if I stuff myself before taking it but I just can't stuff myself before I get into bed at night.
Back to doc - she wrote to a psychiatrist for advise about best anti-depressant for me and sent me for more blood tests. Blood all normal. Moved from Cit onto Mirtazapine. Very interesting side effects including worsening of rls - arms now joining in. Depression worse due to lack of sleep. Ok, next suggestion on the list from the psych was Lofepramine. Now only sleeping for about 2 hours a night then boing, wide awake and terrible rls!!! Mood even lower. Signed off work.
Other things... I'm overweight. I don't drink anything with caffeine, I know I don't eat enough protein and am trying to improve this. I smoke but the last time I gave up it affected my mood so badly I was signed off with depression and prescribed the Citalopram that kicked all this off.
I just don't know what to do or who to ask for advice. My GP is trying but she doesn't know either. I'm not convince the psychiatrist she contacted had any clue... What do I do? Who do I ask to see? I really can't take much more of this but short of amputation there's no other option but to keep on keeping on!
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night-dancer
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Hi Night-dancer, your screen name is going to confuse a few people as we have a nightdancer on this forum already...
Firstly, practically ALL anti-depressants will send your RLS nuts. I dont know why doctors do not know that they will make RLS worse, obviously they need to do more research themselves on RLS. If you get your RLS under control, you sleep and you are then not depressed, unless you are a person who suffers with depression anyway. Ok, it sounds as if Ropinerole is not for you, but there are other meds available to take. Look at this website and at the treatment page, it has a list of meds for RLS, its a USA based site, but most of the meds are used in the UK. Take that list to your doctor and show them what meds can be used. It also tells It you what can make things worse for RLS, including all the anti-d's. rlshelp.org Your doctor can also refer you to see a neurologist.
Just checked out the med list on the link you posted - it is very good. Mind you, I see there are reports that ice cream can cause problems! I have already cut out caffeine & alcohol - now ice cream?! What on earth is left?
Sorry, trying to keep my sense of humour - something I also consider vital to help cope.
I forgot to mention on that treatment page that the BP meds are not used for RLS these days. So disregard them... Yes, ice cream can for some make their RLS worse.... i can drink coffee and eat ice cream, but i think the alcohol is a no no for me. So glad i did all my drinking when i was younger, at least no hangovers these days... Sense of humour is a good coping method, after all we need something to laugh about, when dealing with the beast that is RLS.
Hi and welcome to the forum. Sorry to hear you are suffering so much at the moment. I take Ropinrole and it works very well for me. However I don't take it just before bed as the RLS has already kicked in by then and I know I will be awake for hours so I take it with my evening meal which is about 4 hours before I go to bed. I find this way I don't get any nausea and it stops my legs twitching in the evening. I also find that I am not so tired in the mornings if I take it early evening.
Hi Night dancer, I think I have written to you before, and your symptons seem the same, and at the time that I was writing on this site, I had Clinical Depression, and I must be honest, I was sat around a lot, didn't care, could sleep all day, and worried eveyone else sick as I was just too far gone, I had been to the various assessents, the Physcologists in Cornwall in Liskeard, where I saw the most weird person, I felt normal in comparision to her, but she prescribed all sorts of things for me to try, and none of them worked until Fenfalaxine for Depression, went to the Dr who said, that I would find they would make me hyper so gave me Ripinirole to help slow me down a bit, but I have to be careful with all the medication I take, including Morphine Slow Release 40mg twice a day, and gave it a try, it took a long time for the Fenflaxine to kick in, but gradually and slowly it began to work, and the Ripinirole seemed to be doing something, as I started to get better, and I was starting to do more and wanting to do more, the Restless Legs started again, so I take a view that Depression definately has an affect on Restless Legs, and Stress, and Tiredness which comes with the turf, as I am always walking up and down, but I have got used to that now, and just get on with it, I don't sleep very well, but when I do it could be for 5 or 6 hrs straight and I wake up ok. If I keep busy, doing something, and not sit down to read or knit or watch TV I can keep going pretty well during the day. The minute I sit down and try and relax, it is just like the Restless Devil rears it's ugly head and says Oh no you don't I won't let you, come on keep going, so I take a Ripinirole before I sit down and try and relax, and it seems
to keep the little devil away for a while, when I go to bed I take my Fenlafaxine and 2 Ripinirol 1mg and they can make me go to sleep on my Chaise, and then when I have to go upstairs to go to bed, I feel drunk, get into bed and gone, absolutely gone, wake up for a quick wee in the night, go back to bed, and as long as I go back to sleep right away I am ok, if not, I get up and start doing things, but at the moment, I am sleeping all night fromabout 11.30 to 6 qand get up feeling pretty good, not hungover or headachy like I used to on other pills, take my usual 15 pills in one go, and go and make a Big Pot of Tea, and sit in my Conservatory on my own, and start the day, after 30mins I have a puff on my Electronic Ciggy and then start doing jobs, emptying washing machine, or dishwasher, feed the cat etc etc, write my diary, I think writing my Diary helps a lot because if their has been any stress or agro, I write it all down, and the golden rule of Counselling, is to write down things that bother you and upset you, so I incorporate everything in my daily diary and it really does seem to help, I can now finish off my diary, do all my pills and hoover through downstairs, by which time my other half is now surfacing at 9am, I am already showered and dressed, and going like a little train, have done lots of paperwork today, on the computer, and sitting quite a lot, so I am surprised that the Little Devil has not make himself a nuisance yet, but so far so good, I take good long breaks in between, did some Ironing, and putting away, did lunch, and prep'd tea. Before any of you run away with the fact that I am some sort of perfect person, I am not, and can assure you that this is the best I have been for some 2 years, and my life has been hell, I think I have been to hell and back, and never want to go back, but now I take every minute of every day as it comes, and not afraid now that if I don't want to do something or go somewhere I do not do it, this is me, and me does not always want to do want other people want me to do, If I want to stay in all day, that does not make an Afraid to go Outside, or Afraid of People, I am happy doing what I am doing, so leave me alone, I am sorry I have rattled on a bit, but want to help all the rest of us that have this horrible nasty beastly uncontrollable Restless Legs, it is so undescrible and to try and explain it to any one, Dr'sor Consultants is a nightmare, but ~Spinal ~Surgeon or Neuro Surgeon, they know exactly what you mean and that is great, because you now know it is real and someone believes in you. Hooray. Take Care all you suffers, try my tack, beat it at it's own game you do what it doesn't want you to do, and defy it by when you know you want to sit down and relax, you take the pill first before it kicks in, excuse the punn, and beat the little devil before he starts, as it is difficult to stop once it starts. All take care, I am around and about online, so just reply and I will do my best to help. Widgeylegs, that actually is what I call my Restless Legs, Widgeys. X
The new member is night-dancer. The original Nightdancer is me, Donna from the US. And, I have an RLS group called Nightdancer's for years. So please do not get us mixed up.
Hi Night dancer,
I'm so sorry to read you have such a difficult time. I'll tell you something and hope it will be usefull for you. I myself have RLS since I was 10 and now I'm 66. For years I used Citalopram for my depression and for RLS Pramipexole. I knew that Citalopram is a trigger for RLS, but I had no choice. Last year I had a consult with a neurologist (who I discovered had RLS himself) adviced me to change Citalopram into Wellbutrin. He said that Wellbutrin is the only antidepressant that is not a trigger for RLS. 7 weeks ago I started Wellbutrin and my RLS is gone for 98%. I hope that this is something for you to try. I don't know if Wellbutrin is available in your country, I live in The Netherlands. I wish you all the best!!
in reply to
That's huge!!!! OMg. The question is what is doing the trick? The lack of an SsRI which is what put the breaks on my rls or is it the addition of the Wellbutrin which increases dopamine or some combination thereof? You must feel like a million bucks.
Unfortunately Wellbutrin is not available in the UK as I have recently found out, so I am trying out Trazodone and so far its fine I am sleeping better and my RLS is quiet.
Wellbutrin is available but only if you smoke! It's Zyban - prescribed as an anti-addiction drug to help smokers stop... But obviously not licensed as an anti-dep if you couldn't get it which is weird because that was it's original use. Or is it known as Bupropion in the UK? It's definitely called that somewhere... I saw a study that showed it was good for rls up to around 6 weeks and then there was no diff from the control group after that. Be really interested to hear how you get on evaendennis
It is licensed as an anti-d in US. Are you from the US? IT is one of the anti-d's that 99% of the time will not bother RLS. It started out as a help to quit smoking, but has been classified as an anti-d for at least well over a decade. Lots of people who have to take an anti-d have some success with this one. I take Mirtazapine, but that CAN bother some people, but not me.
Hello night dancer, you have received some good advice re the meds. As to the diet, many people have found relief from decreasing inflammatory foods, see David Wimbler's site at rlcure.com...My rls is definitely food related...I have to avoid all beans, whole grains and night shade Vegs. Good luck and take it a second at a time....best, Gwen
One more time. I am Nightdancer, Donna from the US, and have been for years, plus one of my groups is called Nightdancer's RLS Support Group on FB. night-dancer with the hyphen, you will notice, is not me and just joined. This is getting confusing. We should not be able to double up on screen names. I m getting confused.
I believe that a recent former member mistakenly said that if we stand up the RLS just goes away. Not so for a lot of us. If it went away just when we stand up, then why are we called 'nightwalkers"??? For me, if I put too much pressure on whatever leg is bothering at the time, my leg kind of spazzes back up. So, no standing up does not always get rid of RLS, like 'passing gas' certainly would not help everyone. Some of us have a hard time in that category, to be truthful, so that is not always the answer, or rarely.
Many do this already. No food after dinner, light exercise 4 hrs before bed, like a nice walk. If you exercise too much before bed time , it raises your core temperature and makes it harder to fall asleep.
Just remember that I am Nightdancer and have used it for years. Night-Dancer with the hyphen is a totally different person who I do not know yet, and must be fairly new. So don't get us mixed up, please!
ok, but it is confusing people a bit. I am going to sign all my posts...Donna/USA so as to avoid confusion that is happening. The hyphen is not enough for some people to notice, to be honest. How about Nightdancer 2 at least? That would be helpful.
I have just been to docs earlier to complain about sleep problems and pain in right leg and arm, i had got up to 2 mg on ropinirole but it was causing nausea so i reduced it back to 1mg, after reading on here that citalopram can cause rls to get worse i asked to come off it, i have been on and off it for yrs, so going to see if rls gets better without it, fingers crossed !!!, if not she is going to put me on amitryptiline(spellcheck !!),3 weeks to wait as she cannot give me it while weaning off citalopram,still to carry on with ropinirole but says there is other avenues to go down if it doesnt work in the long run, but i must say thew ropinirole stopped my legs jumping from the start ,,, sleep deprived though !!
If you need to take a anti-depressant, look at the list on this website rlshelp.org on the treatment page it gives a list of ones NOT to take, and which ones seem to be RLS friendly. Amitryptyline (sp) can be one of the worse ones for RLS, for most people, so i would avoid that one. Glad you are getting relief from the Ropinerole. But sounds like you now have insomnia, which seems to happen for some taking that med.
Thanks Elisse i will check that out,not so glad to hear that amit is one of the worst ones for it, bit i suppose we are all different so willing to give it a try if only to help me sleep, taking cocodamol as well have been for a while but they not helping with pain now either and they also used to help me sleep at night but think its the rop that is stopping me sleep as you say L inda
Well you can try it, you MAY be one that can take it. Keep us informed.
I have been suffering from RLS for 30 years now. Tried everything in the book, including exercise, sleeping tablets (including Rhohypnol - before it was taken off the market due to date raping); Pexola ,dopamine and seratonine prescript meds etc. with no benefits at all. Some meds helped for a week or two but the you need to up the dosage to have any benefits at all, which I would not recommend. I also found that any meds like anti-depression, cholesterol etc. seem to worsen the RLS so I refuse to take ANY meds and rather seek alternative solutions for ay problem I develop. Fortunately I am fairly healthy although I am 67.
By accident (blessing from God) I have been sleeping like a log for the last 18 months. Try the following, but be warned, it might take some time to be effective AND you will need a prescription.
1. When you have an attack do one or all of the following exercises:
a) Cool down your legs by spraying it with water and the standing in front of a fan - I don't know why it works but I assume it stimulates blood flow and (put in layman's terms) uses up some of the "excess energy" .
b) Stand on your knees with your toes stretched out flat on the carpet to the back. SLOWLY sit back until your whole body weight is on your legs. Sit like this for at least 3 minutes. Don't sit like this for too long as it will result in the "pins & needles" sensation. What this exercise does is that it cuts off the blood flow to the lower legs. When you get up your body compensates for the lack of blood in your legs by rushing a lot of blood to the area, giving you relief of the RLS feeling.
c) Stand on your flat feet facing and holding onto a wall. Do "toe push-ups" until you feel a cramp is immanent. Then stop and get back into bed. This exercise also helps blood flow.
MEDS:
1) Take three to four Arginine (I find Solal brand the best and cheapest) available at your chemist without a prescription) As this is a supplement
(actually amino acids) don't take it too late in the day because it might keep you awake at night. Arginine (also called L-arginine) causes relaxation of blood vessels and therefore increased blood flow. It is good for people with angina and high blood pressure - but read up about it on the internet.
2) Ask your doctor for a prescription for PAX. Now I know this is a sedative, and can become addictive. It is the generic form of Valium. It is dirt cheap and is a pre-operation drug used to relax patients. I started off with 10mg directly before bedtime, almost 2 years ago and still did not need to up the dosage. BUT, beware, it is addictive and can lead to depression. So give yourself a "rest" of at least two weeks every six months.
Good luck. Sleep well, and let me know if and how it works for you @ econo@telkomsa.net.
Maybe you should see a neurologist. They may be better informed about RLS. There are plenty of meds out there for RLS. Have you tried pramipexole (Mirapex), the patch, gabapentin, oxycodone and the list goes on. Surely one of these meds might help you. Find a neurologist that is familiar with RLS. I bet for sure they can help. Maybe you could call a local hospital for referrals or the sleep area at the local hospital. That is where I started 30 yrs ago. I called the hospital and made an appt.
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Sense of humour is a good coping method, after all we need something to laugh about, when dealing with the beast that is RLS. 
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