Just joined

Hello all. Thought I would introduce myself as I have been reading this forum for a couple of years now and felt it was time I added my own experience into the mix.

I am 56 and female, suffered with RLS for 20 years now and have gotten to grips with it over the last year or so. I have had periods of months without it and then nightmares where sleep evaded me for days on end. I have had ankylosing spondylitis since I was 21 and hypothyroidism set in at around 50. I am on anti depressants from 15 years ago when I had a serious episode with depression. 

I have tried every whack cure and whatever the latest thing was. One thing I didn't do was go to the doctor with it, because experience told me that the meds they would put me on could make it a lot worse.

The one consistent improvement factor I have discovered is my diet and lifestyle and sticking with what for me, are the good foods and avoiding the antagonists. 

Nights on end jogging on the spot trying to tire out my legs were made less boring by scouring the Internet for a cure. I have read just about every forum and latest news for 20 years and I think they are finally getting to understand what may be causing rls. Each time a new study comes out I read it and will implement whatever it is into my lifestyle. 

For me, meds aren't the answer. I truly believe it is about balance in our intake and absorption of vitamins and minerals. Whether this is done through diet or supplementation I think, depends upon the severity and desperation of the sufferer. 

I came to the conclusion that I had to take responsibility for my own cure and that my diet and lifestyle were making the rls worse. Using the research I have read, I worked out what made it worse and have changed my diet accordingly  I got more active, ate better, drank less rubbish and a lot more water. Made my bedtime routine healthy or if I don't  practice it accept that I am going to have a bad night or 2. 

Every now and then I get lazy and I'm ok for a couple of weeks and then it kicks off again, literally! Then it's a boot up the bum and back to basics.

So my advice for what it is worth is the following;

Drink water, lots of it. It flushes out the rubbish, hydrates the body, relieves inflammation (one of the main causes of rls)  and its free 

Cut down/out caffeine, alcohol, sugary drinks, diet drinks (aspartame is so bad) Drink tea at least once a day even decaf is good. 

Stop eating rubbish, I'm sure we've all read the rls cure site and it makes good sense. If you eat crap then you will start to feel like crap. The body is a machine that relies on the fuel you put into it. Feed it poor nutrition and it will punish you. It may take years to get to that point but it will make you suffer at some point. I believe diet is the biggest factor in improving the symptoms of rls. Learn your own triggers, by keeping a food and activity diary with a scale scoring how bad your symptoms are. You will soon learn what makes it worse.

Exercise, yoga, walking, strength training, or whatever floats ya boat. Get the blood pumping and stretch and strengthen your muscles. 

Get a deep tissue massage and see an osteopath on a regular occasion. I know they can be pricey so maybe get a friend/partner to do the massage and try to get the osteopath on the NHS. I bought my thumper as I call it from Argos and it does a deep tissue massage wherever I need it. (I know when I'm going to have a bad night as the tissue in my thighs feels weird and heavy) 

Finally take responsibility for your own health. It will not cure everyone but I bet at least half of us with rls can get a lot of relief by improving our lifestyle. I am a Dip ION which means I trained as a nutritionist at the Institute of Optimum Nutrition in London. So I do have some authority and expertise in the nutrition and lifestyle side of things. 

I know it's a long post but I've been meaning to write for a while and who knows, it may even help someone x

27 Replies

  • Hello and welcome. Glad to see you've got things as well sussed. 

  • Thank you raffs. I wrote that quite late last night and re-reading it sounds a bit know it all !. As with most health issues, it's always there but at least these days I know why it's flared. I do still have nights where I'm up and down until 5 in the morning, but if I'm honest with myself, it's because I have been lazy in my habits. Only those if us who suffer with rls know just how horrible it is. You can't see it and unless you have it, it's hard to imagine that it can bring you to tears in frustration. I just wanted to pass on my own story and theories x

  • I completely agree that certain lifestyle and dietary changes are needed in order to self help with RLS. I TRY to cut out sugar and sweetener and have drastically reduced my caffeine intake. Drinking lots of water really does help and is good for your skin as a bonus! I no longer drink alcohol ( that was a toughie, as l miss my evening glass of wine) I try to eat fresh and home cook meals whenever possible and walk for an hour every day.

    I tried introducing Curcumin as an anti inflammatory, but funnily enough it seemed to make my RLS worse.

    These are small changes that have given me bigger rewards. It seems true to say that for the most part, we must be pro active in helping ourselves.

    We are all different, and what helps one does not necessarily help all. But, knowledge is power and we support one another by sharing it.

  • That's the worst part isn't it, that something works for one person and not for another. We are all biochemically different, so the levels of vitamins, minerals etc needed will differ vastly in most cases. As will the effect of certain foods etc. My husband is 62 years old, can still run, doesn't wear glasses, has no aches and pains and is disgustingly healthy. The only problem he has is mild asthma and yet has never smoked a cigarette. I on the other hand smoked like a chimney for 30 years and now I've given up have no chest problems at all. Out of interest, smoking had no adverse effect on rls for me.

    I do wonder if blood group has an input. I'm an O neg blood group. I know some blood groups are more susceptible to certain illnesses. Are there any studies on this? 

  • no studies on this at all, so just a theory right now. My entire family has it, and that is Primary, or genetic, RLS. And, we all do not have the same blood types. We did this blood type question a few years back in my groups, and no common factor was found for blood types, any blood type can get RLS, in our very informal poll. But, it was over 5,000 people who participated. Unfortunately all those results are on my dead laptop right now.

  • I`m doing all these things, but still suffer with RLS now & again.

  • Hi Tuckerpoo, what is a 'Thumper'?

  • It's my nickname for a handheld deep tissue massager I bought from Argos.  It literally thumps the tissue. I read on one site that you needed to move the rubbish in your cells and deep tissue massage was the way to do it. As I can't afford to spend a fortune on massages every week I decided to try a home one and it works really well. 

  • Bravo!! I agree 100%! I found out years ago that you have to take charge of your own health. The more knowledge you have, the better off you are. Personally I am convinced our industrialized, Westernized lifestyles have everything to do with most chronic health issues, and diet is absolutely at the root of most of them. One comment I read years ago in a book was that heredity only becomes an issue (a tendency toward heart disease, cancer, whatever) ONLY if you abuse your body to the point that something is going to manifest. The theory is that heredity doesn't dictate you have to get what your family has had if you just take care of yourself properly. I just have to wonder how much that applies to RLS since it is definitely hereditary. It could well be that it is something like nutrient deficiencies, or pH balance, or like you mentioned, dehydration, or whatever, that mess up the whole dopamine/iron thing. There HAS to be a reason for it. Your body just doesn't do stuff for no reason- it's responding to something, and diet is, to my way of thinking, the first thing to fix. That's free!

  • I think today's way of life has made people wait for someone to give them a tablet that will make everything better. Sadly there isn't one for rls and because of so many idiosyncrasies I'm not sure there ever will be. I think the only hope will be gene therapy where they learn how to switch off the rls gene trigger.

  • there ARE meds for RLS, so you really cannot say that statement. Not being argumentative, but this is what discussions are for.......We all have to do what is best for US, and if that includes meds, then so be it. There ARE actual meds specifically approved for RLS since 2001 and 2004, and also many meds used off label that work even better for many people. So, we are not just blindly taking pills/tablets, etc. I have many things going on besides RLS, as many people do, so meds are part of my life now and will always be. I just turned 60, have had RLS since I was 14. Both my sisters have it. 1 is on meds, 1 is not (well she takes some herbals, so technically those have to be considered meds) both my nieces have it, and the oldest niece has 2 kids who both have RLS and PLMD, plus sleep walking. And, we all eat different diets, nothing environmental can be traced to our RLS. Secondary RLS is RLS caused by outside factors, such as the wrong antidepressants, other over the counter meds, and so on and on and on. There is no one definitive answer just in my family, and no one answer in any of my groups in 22 yrs.

  • I'm sorry nightdancer, I didn't write that correctly. What I meant was there is no one single medication. Yes there are meds out there that work very well for some people and thank goodness for that as not everyone has the ability to look for anything else. However I do believe that some people do not want to change their lifestyle or even explore the possibility of it and wonder why they can't get any relief. It doesn't mean that I  think anyone on meds is lazy. If it works that's great, but I have heard so many horror stories of augmentation that I chose not to go down that road. 

  • That is only for the dopamine meds for augmentation, just so you are clear on that. Many other meds can be used.

  • Yes, we have to take charge, and that includes "bumping up" the education of some of our doctors. Yes, we have t be in charge, but that does not disclude meds. Some people ARE on the wrong meds, like some antidepressants, or too high a dose of dopamine. There are many classes of meds used for RLS nowadays, and I will do all my sleep hygiene, but have to take meds,  or I would never leave the house. That is a fact of life, that some people DO need to take meds.

  • Oh, no contest. They are a necessary evil sometimes.

  • Thanks, I'll look into that - have a go at anything now the symptoms happen every day!

  • If you have a willing volunteer at home they can do it for you, but it hurts my husbands hands so he can't do it. I used to karate chop myself a lot and that helped which was why I tried it. 

  • It sounds quite a painful process!

  • better than the baseball bats, I will say! ;) The stories I have heard ovr the years, people will do anything. I USED to pound my legs,. But now with the right meds, my RLS is 90% quiet and it does not get any better than that! ;)

  • Welcome. I do have to say that "clean living" will help many things. RLS is a neurological disease. Some of us have been managing RLS support groups for 2 decades (for me) so have seen and heard it all. What works for one person does not always work for the next person. I have been through all the elimination diets, and while some foods CAN bother some people, it is not so for all of us. Some people have to take meds for any quality of life, so while all of your advice is good stuff, many of us do have to take meds or we would not be able to function. And, as always, watch out for those internet cures ( comment to everyone). If it sounds too good to be true, it is. Thanks for your thoughts.

  • Not sure if I should add this but...it really is helpful. A puff or two of pot does wonders. I don't do drugs, I don't even like to take aspirin but I read that it's affects are instantaneous for rls (it's is). It may not work for everyone and yes, I know that it is illegal in many places however it does have medicinal properties and should be studied as a legitimate med. Just my 2 cents.

  • TOTALLY agree, Twiggster! I live in medical marijuana state in the US, so I know for a fact that the correct strain helps me sleep MUCH better. And, I can take less of my pain meds when I have it. VERY relaxing! ;)

  • Thank, it is great to hear other peoples stories, and to get ideas, etc.  I have just posted about my first visit to see an Osteopath and she was talking about the body being healthy and needing to be flushed out, and let energies flow freely.  So that is something I am trying at the moment, along with meds.  Sadly, the meds I am taking are less and less effective, and at some point I will get to the highest dose, and then what?  Some are so potent that the initial side effects have been too much for my body to take.  I hope you continue to be rid of RLS.

  • SLMCP, I assume you are on dopamine meds , the way you describe what is going on. There ARE other meds and things to try. Depending on what dose you are on now, if on doapmine meds, putting the dose up will most likely only help for  short bit , and then your symptoms will get worse again. upping the dose is the exact wrong thing to do with the dopamine meds. Search "augmentation" here,. you will get lots of conversations on that subject.

  • Over the years i have tried everything, potions, lotions, hypnotherapy, acupuncture, various Vitamins, iron pills from my doctor, mag spray, etc. None worked.   I would do anything to get off of meds which give me side effects.  But its not going to happen, i need meds to keep my RLS from driving me insane from no sleep.  I dont eat rubbish food, my diet is pretty healthy, i am not overweight, which some people seem to think being overweight causes their RLS.  You can have RLS whether you are a big person or skinny.  I have Primary RLS, genetic, inherited from my father as did my brother, so its a family thing.  If and when they find a way to correct the defective gene i have inherited then only meds are going to help me.   The only trigger i have found is alcohol so i dont drink at all.    If anyone finds what works for them then thats good and i hope it continues for you.  

  • Same with me Elisse, tried everything on and off the list of meds and other things to try. NONE worked for me, so meds are my only salvation, and I am glad I do not get the side effects that you do. But, none of that "all natural" stuff wrked for me, even though I incorporate a very healthy diet, do not drink alcohol EVER. For people who do not know, alcohol can block the neuroreceptors in our brains, and will make RLs worse for 99% of us. THAT is the ONLY trigger I ever found, and have not had any alcohol for 30 yrs or more.

  • I knew a long time ago that certain foods accelerated RLS and it got to the point I had eliminated most of my diet which was not practical.I don,t know what the answer is but I do wish someone would figure it out soon.My current regime is hopeless. 

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