Hello,

Just wondering if anybody suffers from restless leg syndrome, plus if you do how do you cope with it?

I seem to have periods when it doesnt bother me then suddenly off it goes again. I dont seem to be able to pinpoint the cause. I take codiene and paracetamol they last about 4hrs.

Is this part of being coeliac or maybe part of Psoriatic Arthritis or none of the above?

Having RLS leads to sleepless nights therefore an even more grumpy me!!!

31 Replies

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  • I had it for a brief period when I was suffering from anxiety/depression a couple of years ago so I know how irritating it can be. Paracetamol and codeine will only make you more drowsy- it won't treat the problem itself. Go and see your GP- she/he can give you quinine which is usually very effective.

  • If yours is a nocturnal problem it is PLMD - RLS is also a daytime problem. An older male family member suffers badly with both RLS and Periodic Limb Movement Disorder which originally started out as occasional bouts when he was over-tired, but it's now every night to a greater or lesser degree. Quinine wasn't really effective and apparently isn't good for long-term use. The doc insisted on him stopping caffeine totally also eating lighter (low carb) meals later in the day and it has helped. Getting the caffeine out of his system didn't happen overnight, so be prepared for a fortnight or so. No low caf either - it's also in decaf drinks and some over-the-counter headache painkillers his consultant says). He now has regular calcium checks because it can be to do with the parathyroid gland. It is also implicated in certain medicating drugs [he's asthmatic and his drugs are one of those]. It's also implicated in anaemia (although as a long-term anaemic thankfully I haven't suffered RLS),. So make sure your doctor has checked your bloods.

  • PLMD is different from RLS (which can occur only at night, by the way, although you're right in that it can also be throughout the day too) in that it involves involuntary myoclonic movements of the limbs. If the OP is sufferering from a near painful urge to move the legs which can be relieved by voluntarily moving them then this is indeed RLS.

  • Although having just looked up the guidelines for RLS, they apparently no longer recommend quinine due to certain haematological side-effects. I guess the consultant I've seen using it was a bit old-school. Disregard that bit anyway!

  • Just re-gurging what the consultant and doctor said when I've accompanied them to appts and thought it might help Leslaki. It's a relief not to be the patient as these days it's "all about me"!

  • Many thanks for all the input, my legs are uncomfortable during the day too but didnt link the two , funny about the caffiene I have been considering cutting that out, so after reading all the replies, I will go back to herbal teas.

    The doc did give me some Neurontin but they just keep me awake even though it states may cause drowsiness, for me medication never seems to do what it says on the tin!!!

  • just read up on Neurontin, could have thoughts of suicide, already on anti-depressants so i dont need that!!!!

  • If you've been on the gabapentin (neurontin) for a while then you'll need to taper the dose down gradually over a few weeks or you can get a withdrawal syndrome. Give your doc a ring and ask.

    Some antidepressants can worsen RLS so remember that if/when you come off them, you may see an improvement.

    Cutting down on caffeine is probably sensible. As is reducing your alcohol and nicotine intake if applicable. Doing mild exercise (a walk or pilates/yoga) before bed can also help (and will also help to lift your mood too).

    But if it's really getting you down- please go and tell your doctor the gabapentin isn't working. There are other medications available.

  • Thanks northernsoul, will do

  • Be careful with the paracetamol and codeine - my other half was on this for 10 days with back pain and when she stopped taking them had terrible withdrawal symptoms - blinding headache and nausea.

    About two weeks later she took one dose and had same symptoms when the medicine was wearing off. Apparently takes 6-8 weeks to get codeine out your system.

    We've stopped using it.

  • I should add doctor's/pharmacists advice is to take it for no more than 3 days.

    Its not just how much you are taking, it seems that the regularity of it also creates a dependency.

  • I believe that many members of GFG take codeine regularly.

    When the symptoms of CD first came on my Dr put me on codeine phosphate as that was the treatment for colitis and I took these for years. Then I had a knee operation and was given morphine. I thought these were great as they settled my stomach much quicker than the codeine but then I started getting anaemic again so decided to stop taking them. I had been taking them for 4 years and I told my Dr I didn't want them any more so could I have codeine instead. And it was really funny as he said now steady on Mr H and I'll give you a prescription for 100 so you've got some in case. But once I get a bee in my bonnet that something is making me ill it's a no no. For a few days I felt like I was getting over flu and my legs kept kicking when I was in bed. Then I started to feel so well I forgot to take any codeine. And I haven't looked back since and I don't take any med's now.

    Sometimes we have to feel worse to feel better and if you can get your head around that you're in control.

    So I think this is a very good point about codeine/opiates as the reason they call giving up heroine: ''kicking the habit'' is because their legs kick involuntarily.

    There was also an illegal heroine lab found in NZ where they were buying codiene and paracetamol and turning it into heroine so it's a powerful med' that's for sure.

  • Thanks for all the messages, very helpful and taken on board. I walk every day with my dogs and am stopping caffiene today, will see if that helps.

    I understand what you are all saying about the codiene/paracetomol and my doctor has said the same, ( only take them at night if necessary)but the thing is I can fall asleep ok but then after maybe an hour i am woken by the pain in my legs, I try and manage without but sometimes it is just too unbearable and annoying.

    Im not sure if its a possible side affect of Leflunimde I take for PA. Will keep trying different things till Ive got it cracked hopefully.

    Thanks All

  • A very good aid to restless leg syndrome is to use a weighted blanket on your legs while you sleep. Easily made with rice sewn into pockets of a blanket - pop a cup of rice into a sock, roll the top down to seal, make dozens of these and space them out on the blanket and sew in.

  • The family member I spoke of earlier once slept with some 5lb leg weights strapped around each leg in an attempt to stop them going mad - it worked for about a month until his legs had become used to the weight and were managing to fly about again! He stopped using them but said his muscles had really become quite impressive!

    I mentioned I had spoken about him on here and he asked if I'd mentioned the caffeine ban; not getting over tired and avoiding things like MSG etc.

    Have you looked at the web info linking the menopause to RLS?

  • Hi jacks, i had a caffiene free day yesterday and although my legs were restless in the evening I managed a good sleep minus the codiene, so result!!! Will definatley stay off the coffee!!!

    Am trying to cut down on food generally am a tad overweight so that might help too!!!

  • Very interesting, I would try it only I am menopausal and get night sweats quite badly so cant bear anything heavy on top, need to move clothes off quickly, to be honest if I was a dog they would put me down!!!!!

  • Try putting a pillow under your mattress at the feet end, this works for some (but not all) I take an amytriptyline for it and this calms them down,,, i used to get it soon as stopped using my legs,

    It used to drive my husband nuts as I learned that if I constantly did the "airplane --stop dvt-excersises" it really helped but the constant movement of my feet and legs while he was watching tv/using his laptop was very irritating ( and I was pretty knackered by bed time and then could not sleep because of the constant need to move my legs and buttocks)

    I hope you sort it out very soon as it is quite soul destroying, and unless you suffer with it you cannot truly understand how evil this is.

  • YES.. I suffer badly with RLS, this started for me when diagnosed Hypothyroid...and has got worse now that I am Wheat/Gluten intolerant. Mine is bad enough for hubby to frequently sleep in spare room as he gets "bruised" from my kicking and thrashing legs....Unless you have ever had this you would have no idea how maddening and frustrating it is. Best way for me to describe is a feeling of ants crawling up your legs and the constant need to move legs to dislodge them, but of course no relief is found, mine is worse at night but have same problem while sitting watching TV the need to constantly fidgit about, I get severe cramps in legs and feet also....I guess being menopausal is additional suffering, as the night sweats and hot flushes come and go at random even in a bedroom with heating turned off and -10 temp outside!...am I alone in dreading warm summer nights?...I find RLS is MUCH worse after excersise, which leads to a double edged sword!...so going for a nice long walk with my dogs is lovely at the time but I know I will suffer for it, likewise with a shopping trip etc. I now try to have a day or so, with little or no excersise each week ( not good for figure or the dogs!!)...When an effective remedy is found I will be front of the queue!! Wishing you well x

  • My husband mostly sleeps in the spare room for same reasons RLS plus night sweats not good for a relationship thats for sure!!!

    Have tried the pillow 1stgls, most nights I try it between my knees, I have psoriatic arthritis so this helps both ways, oh dear right old crock I am!!!!

    Again thanks all for the advice and info very much apprieciated I will persevere until Ive cracked it!!!!

  • my doctor prescribed feldene gel which i am taking at the moment so dont no if it is taking affect yey.

  • Hi, it might be worth you checking this site out: fitonraw.com/

    the founder of the site used to suffer from RLS and many other things.

    she is now free from it all because of her diet change. when i stumbled across her site last year through searching for wheat, gluten, and dairy substitutes for my diet, i thought her diet was very mad and extreme and that she was crazy! i purposefully signed up to her free newsletter to laugh at her craziness.

    it was through looking at other sites and research that my views started to change towards this diet, and the emails i got from this woman started to show me only common sense.

    its been half a year now since i started eating this way and my IBS has disappeared and i no longer have problems with any food intolerance. Also i have a list of other improvements it has made but its a bit long to put on here hehe.

    i am only encouraging you to explore and experiment with what Swayze has to offer, and don't let your first reactions turn you away like mine did!

    god bless and good luck in future whatever your decision may be. :)

  • Hi Kezzie94, have had a look at the website and have signed up for the newsletter so its watch this space, years ago i did a detox which was along those lines and if anything it will help me lose weight.

    Thanks

  • Hi Leslaki, Sorry but I've only just read your question. Restless leg syndrome is often caused through a shortage of magnesium/B12/folic acid in the diet. Many articles that I have read over the years also say a person can be affected by artificial oestrigens such as those leached by plastics.

    Perhaps you could ask your doctor for a blood test to check to see if you do have any vitamin or mineral shortages.

  • Thanks Lynxcat, I was taking folic acid when i was on methetrexate for Psoriatic Arthritis, so sounds as though i should keep taking them for a while, I am taking multivits, I have a blood test once a month for PA so will ask the nurse next time i go. Thanks again

  • I hope that this sorts it out for you. Everyone needs a good nights rest don't they. Talking of sleep something which you may find of interest is that it has only been during the last hundred years or so (Industrial Revolution) that people have actually lay down and tried to sleep for eight or more hours at one time. If you look back at ancient records, even during Charles Dickens' time you will find that people would go to bed and sleep for about four hours - it was called 'the first sleep' and then they would get up, sometimes do several jobs and have a drink and visit the toilet. After a few hours more they would then return to bed for their 'second sleep' this would take them through until morning. So what we are told is natural today isn't really natural at all it is something that has developed only during recent times. It makes you wonder if we reverted back to this traditional way of sleeping whether we wouldn't all perhaps be more healthier and happier!

  • very interesting. When I lived in Greece it was often very late to bed ie 2am then up for seven for work, home again at 2pm eat then siesta time 5pm back to work until 9pm, so not unlike the way you described.

    Of course I was much younger then but it is still the same now more so for the younger ones, mind you i dont know how many still have jobs!!! I know my nephew is struggling and hes an electrician!!!

  • The Industrial Revolution was also the start of married people sharing a bed, due to lack of space in overcrowded cities. Even up to Victorian times, so it is a very recent idea. Before this time a marital bed was not used for sleeping ...

    In the USA research suggests 12% of the population do not sleep with a spouse.

  • Hi, not sure if restless legs. I could see nerves or muscle twitching in lower legs at times and wasnt very pleasant in bed. told gp, he said was age ,it was ok wouldnt kill me. Went home and knew I had to do something (didnt think to take pain tabs) so made extra sure had plenty protein, fruit and veg, carb and fat...recorded it. now all settled . didnt think age was the answer, super not to put up with twitching anymore. Thought I was eating ok before, maybe I wasnt.

  • Hi there,

    Sometimes docs just dont seem to be any help, ive met a few like that over the years, I have changed my diet too eating more fruit less of gf processed products bread and cakes and have cut out the coffee, thus far seems to be working, all that has to happen now is weight loss!!!!!

  • ps without codiene or paracetomol!!!!

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