No pattern: Having suffered for years I... - Restless Legs Syn...

Restless Legs Syndrome
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No pattern

Smiffyliz
Smiffyliz

Having suffered for years I still have found no pattern. Had two good days last week when instead of taking two cocodamol at night I replaced one with paracetamol. I massaged with tiger balm and had no more problem during the night. Thought is this the answer. No such luck. Continued same routine kept a diary and rls back big time the following night.

I have never managed to find a trigger

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Hidden

Not everyone finds a pattern. You can do everything the same, eat the same foods or drink, the RLS will over ride everything and still get ya.! My only trigger is alcohol. not everyone has triggers. Dont lose heart, hopefully your RLS will settle back down again.

Sometimes it can take years to pick out the component which is the problem, especially if you have multiple triggers. I took me ages to find that sorbate food preservatives were one of my triggers, but it took another three years to realise that another trigger was sugar, or high carb foods which raise the blood sugar.

Your rls may not be food related, but if you can find a trigger, the relief of no rls makes it so worth the effort, and it's no problem - until you need to eat out.

Smiffyliz
Smiffyliz
in reply to Eryl

I agree. But have been trying for over 20 yrs and still don’t know

Food triggers can be hard to find because of (at least) two effects latency and thresh-hold.

In my case latency means that I might eat my trigger on Monday but I miss sleep on Tuesday and Wednesday nights.

Threshhold means that I can eat a small quantity of my trigger and it has no effect but if I eat the same amount for three days then I experience the RLS

The third effect (with apologies to Monty Python) (I don't have a name for it) Is that the trigger might be a substance that occurs in several foods so you might eat something that seems quite different but for several consecutive days you are getting your dose of the trigger substance.

These are partially accounted for by one of the exclusion diets. There are probably thousands of exclusion diets but the FODMAP and the Prince Alfred Hospital Low Chemical diets are the two I know about. The principle is the same. You start eating foods that are known to be harmless to almost everyone. If your symptoms go away then you start re-introducing real food in an organised and "scientific " order so that you find out whole groups of foods that are tolerated by you or that you need to avoid. In a few months you should have a diet that you just have to stick to from then on. (if you're lucky)

In my case I discovered that gluten free helped a lot, then FODMAP helped a lot more and that combining this with the Low Chem diet was too hard so I finished up finding I was lactose intolerant as well and finished up on FODMAP with extra exclusion of lactose, gluten alcohol and caffeine.

I recently had one cup of caffeinated coffee on the grounds that one cup couldn't really hurt. I didn't have a RLS problem but lost almost the whole night's sleep because my eyelids didn't want to close. I guess that enjoying just one cup of caffeine has become "collateral damage"

Thanks Graham

That is helpful. I do use Fodmap diet but haven’t really stuck to it long enough maybe. I have bad ibs too which is mainly why I use it

This week I am trying to cut caffeine out completely as well as wheat and dairy and really cutting back on green veg. I try to avoid sugar but that is really hard as I do enjoy a biscuit

If you are in Aus then you can get good sugar free biscuits at Woolworths.

Sugar is bad for you anyway. It just makes you hungry and your body doesn't need it. I used to love meringue and found that opening the packet was the end of my control, I inevitably finished a packet in two hours.

The diet is not easy to stick to. You just have to say if I eat one mouthful then I will suffer Is it worth it? Not much food is really worth it. A child's birthday party perhaps?

I am in UK Graham. Know sugar is bad for you but both parents lived till 97 and survived on my mums home baking so can’t be all bad

Hi Smiffyliz

Yes, I’ve been trying to figure it out for years, kept diaries, tried excluding certain foods etc. Had a brilliant night last night, the night before was horrendous. WHY?

Smiffyliz
Smiffyliz
in reply to LoisTonya

Hear hear

Hidden
Hidden

Yep, I think that’s the most annoying thing about this syndrome!!

I’ve had some theories as to what makes my RLS worse, but unfortunately they have all been disproven. After having a very bad attack the night I had a slice of apple pie, I was convinced one of the ingredients caused it. That theory was disproven since, months later, I made the same recipe, had a slice, and had a great night.

I then thought that one of my triggers was a build-up of sugary things over too many consecutive days, but that theory was disproven as well. It is so incredibly frustrating!!

Smiffyliz
Smiffyliz
in reply to Hidden

I find tiger balm helps but not so last night. Had a terrible night

How do you use tiger balm?

Just massage it into calves and lower arms

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