Restless Legs Syndrome
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Tips for a new UK sufferer

Hi,

Its my first time on this site and I already feel some comfort in identifying with medications and symptoms. My RLS is causing me great sleep deprivation at present. Having various difficulties with pain, I have been a user for a number of years with Co-Codamol. 30mg/500mg. But...being a recovering alcoholic, I'm aware of my addictive tendencies towards a multitude of things. For a long time, I've been taking Cocodamol of a night, which helped with sleep, but was aware that I may be taking it more for effect than to relieve pain. So, I wanted to come off them. However, the past two weeks have become a nightmare, with 3 or less hours a nights sleep, until I relented and took either one or two tablets.

There is a short window where I am not jumping all over the bed with RLS and if I get to sleep in that time, I'm ok. I've always blamed the fact that my body might be so used to codeine that the RLS was part of the withdrawals and that they would subside. This time, it doesnt seem to be the case.

However, I notice that from the list of drugs that can cause RLS, there is Citalopram. I've been on this for about a year (been on previously too) Although only a low dose 20mg, I'm wondering if this has brought mine on. There is my mum was also a great sufferer with it, so I'm also wondering if its also been inherited. I'm 54 years old male, and I'm looking for any suggestions tips of people who might have taken a similar path? Ideally, I want to come off the anti-depressants, and get to a point that a painkiller is used only when needed.

If nothing else, its been uplifting to write all this down and share it, as I've not had an outlet for it before.

Thnak you for any help or advice you might be able to provide.

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Did you just stop the co-codamol or wean your self off them. ? RLS does run in families and sounds like your does, so you have Primary RLS, genetic, inherited from a parent. Why are you taking the anti-depressant..? because of the RLS...? If you NEED to take a anti-depressant then you can try another one which will not make RLS worse. as you are in the UK, there is Trazadone and one more which slips my mind. Have a look on the RLS-UK website they should have it listed. Depending on how bad your RLS is and if you are suffering every night, then a pain killer to take as when needed wont be that helpful. The RLS-UK website also lists the meds available for RLS.

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Hi Elisse,

I did try cold turkey and was awake for three nights solid. I take an anti depressant due to depression, not related to RLS, but of course, that hasnt helped. I've caught up on a lot of dvd watching, on the plus side! I will have a look at the UK site. Thanks for the response, Elisse. Much appreciated,

regards Ian

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You need to wean off the co-codamol slowly, untll your body gets used to not having it. Any med whatever it is should never just be stopped. As you need to take a anti-depressant then i would discuss with your doctor about seeing if you can change it to a more RLS friendly one.

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Hi Webbeing,

I'm not big on pain killers, but I can help you with the anti-depressant aspect. I am on 20mg Escitalopram for depression. I have been on it for years before my RLS diagnosis, so I know that that's not the cause for me. My neurologist wants me to get off of it since it can exacerbate RLS, but I seem to be stuck. I've tried coming down twice over two different time lengths, but with extreme depression setting in both times. Although I loathe being put on yet another medicine I think I might suggest to the GP that I try again, but only if I can do it along with starting another anti-depressant as a counteractive. I am on my way down on the the other 2 anti-depressants (take 3 altogether), but can't get rid of the one medicine that can make all this worse. Ironic, huh?

Non-medical advice I can give you for pain is magnesium oil. I massage this oil on my legs and it helps for my pain (although lately my pain has gotten worse, so I've switched to Epsom Salts which seem to work a lot better - maybe because they're more potent?).

I'm sorry to hear about your severe sleep deprivation! I am also severely sleep deprived. I had a sleep study earlier this year that actually showed a nearly destroyed deep sleep (6%), so even if I sleep I don't sleep well. Anyway, the only reason I'm telling you that piece of info. is because I wonder if the anti-depressants play a role in that? Might be a partial answer to your sleep deprivation as well? I use liquid b12 and magnesium oil (which I rub under my nose) for energy and de-fogging.

Hope this helps some.

Take care,

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Hi Jess. Many thanks for your tips and advice. I think my first in roads in are going to be coming off the anti depressants too. I have alwasy drank way too much fizzy pop for my own good and cut them out over a week ago, after usually having about a litre a day. The difference in my persona is astonishing. My mood has lifted incredibly and I have to put it down to the cola.

I also have a a massive ongoing battle with nicotine, usually in the form of gum. I was off for about six weeks and my sleeping improved no end. I was basically falling asleep before the RLS could kick in. Sadly, I relapsed and I'm longer going off, by which time the RLS has really kicked in.

Hoping to start weaning off gum in the next few days.

Couple of positive things, which will hopefully help.

Kind regards

Ian

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Oops sorry, I meant rosemary oil for under the nose, not magnesium. Too many oils!

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Hi Ian,

I am a 49 year old recovering alcoholic with RLS, Fibro, CFS, an insulin dependent diabetic plus a few other things, you get the picture😂

I would say that there is a 'risk' of addiction to drugs for alcoholics but it is not necessarily so and sometimes worried about too much because of the horrors of alcohol in the past. Being dependent on a drug is a very different thing than being addicted to it. I have little choice but to take opiates and have a bit of a life or remain bedridden.

I take the absolute minimum possible have a great GP who supported me through the early days of sobriety ten years ago and gives sound advice now. At first I refused any ' mind altering substance' as it says in the Big Book of AA (don't know if that was your route to sobriety). But under GP, Pain Clinic Doctors and specialist pain psychologist I agreed to take them. I wish I didn't have to but there you go. I also discussed it with my sponsor and trusted members of my group who agreed it was the best way forward.

It was explained to me at pain clinic that we have a certain number of pain receptors, the painkillers block the pain signal to these receptors. If you don't take enough painkillers the pain continues as receptors not blocked. However, if you take too many painkillers the pain message has already been blocked and that's when a euphoric effect associated with pleasure and addiction starts. So slowly building up dosage is vital. I am always in some pain as I don't take full amount I'm prescribed as wary! I have no euphoric effects despite it being morphine and Tramadol, very strong drugs. Every now and then I stop taking them to check I'm not addicted! I don't get cravings but I do get unbearable pain! They allow me to function, so I can get to loo, move about house, get to appointments etc. I don't feel that they mentally impair me or cause addictive behaviour. These are tablets. The one drug that does concern me is oramorph. I am prescribed it for breakthrough pain not daily use. It is an extremely potent liquid and it contains alcohol. I rarely use it and it has fortunately never led to alcohol cravings. It's dangerous stuff but stops admission to hospital. I am blessed that my wife is a specialist ICU nurse, though her bedside manner needs working on!😂😂😂

I'm always here to chat, in group or private message. I know where your coming from. Cocodamol is mainly paracetamol with a small amount of codeine. In my non medical opinion if it gives you pain relief, sleep and you use it as directed then it is the correct course of action, but that's just my view my friend.

I have never found anything to help on sleepless nights apart from accepting that's how it is. I stay away from sleeping pills, highly addictive and don't work after very short time. I had an awful experience with an anti depressant called Duluxotine. Prescribed off scrip for nerve damage not depression. Depression as you are obviously aware very serious and needs to be treated separately, maybe an alternative to citalopram could be found, if you have a chemical defficency that contributes to your depression then something is needed.

Sorry so long just came tumbling out!

Kind regards

Patrick

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Hi Patrick--I was surprised to read of someone having many of the same conditions as I have. I was recently diagnosed with cfs and fibromyalgia, and I haven't had alcohol in six or seven years (was drinking most days after work to escape and kill the pain--and seemed to give me energy).

I also have severe pain that started a few years ago and take opiods, in addition to an rx nsaid and Cymbalta (have tried to wean off it twice but the allover nerve pain was so horrible, plus the restless feet would come back and also became psychotic somewhat).

I started having restless legs many years ago but only sometimes and not horrible--but hated it. My grandpa had it (didn't know a name but would have to get up and walk at night which was why he and Grandma got twin beds).

I've been so thankful that the restless legs were nonexistent over the past years and that I could usually sleep--but now they've started up again, every night and even mildly in the day, which I notice because my fatigue is so severe that I'm often lying in my bed.

A horrible facet of cfs and restless legs is that often I'm too exhausted to get up and pace the hallway.

My cfs definitely is virus connected and I think the viral part has been acting up and Im wondering if that's causing the rls.

Pain meds don't help. Like you, I only take what I must to not be miserable but have tried taking more at night but doesn't make much difference. Pain pills can keep me awake, too. This whole brain sickness has also given me anxiety so I also try taking lorazepam. It may help a smidge.

Icy Hot and menthol creams used to work but now not as long or as well. One cream called Magnilife, made for restless feet/legs, works best and used to stop it for the night.

I recently discovered by googling accident that I had seratonin syndrome due to some of the meds and herbal supplements/vitamins I was taking. I had changed times and was taking the strong ones together and must have overloaded. This may be what set off the legs. I also take ritalin/amphetamine slow release when I wake up or could not move. I've cut the dosage down to also try and help.

I read that drinking tonic water (quinine) helps restless legs and some people swear by Vicks Vapo Rub.

One thing that helped me years ago was putting one of those electric back massagers in bed at my feet and keeping that on low to manipulate the bottom of my feet instead of me having to flick and rub or walk. It worked. Need to find that contraption and set it up. I seem to forget plus always think it surely won't be bad again tonight.

I can't believe how long many people on this site have had rls. I'm 52 and wondering if this is my start of a long, chronic phase. Having the many symptoms of cfs and pain, I already thought I was in hell. Adding rls to these is beyond my comprehension. Every day is about survival. Now I have to survive the night, too? I don't think I can do this. I have a wonderfully supportive boyfriend of six years and two daughters I adore and thank God are in teens and I don't have small children to take care of constantly anymore.

It's hard to look forward to anything (too sick or tired to go anywhere for enjoyment). I try my hardest and get to the pool and swim a few laps and try to walk. I was such a doer and worker for decades so it's been hard to adjust and feel chipper and positive about a life like this. I'd been going to so many doctors and hoping for a fatal something to free me from this. Instead, I now know my heart and legs and everything vital are in top shape so I'll be doomed to this for a long time. Always hopeful it will become less severe after my hormones are done going haywire.

I just wanted to let you know I'm sorry for the combo of afflictions you're dealing with and truly know how much it can suck. I still laugh a lot and enjoy the simple things and appreciated your positive tone despite all.

-Bettina

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Hi Bettina, just a quick reply as I can't keep my eyes open to say hi and will reply tomorrow. We are very similar in symptoms and outlook also

I look forward to chatting to you but in shut down mode at moment.....

Patrick c

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No worries...do not expect any timely replies and if I end up not replying it's because I forgot my password! I'm also probably in a different time zone--Wisconsin/US.

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