I read about all these medications and I don’t know enough to have any comment on them but I just want to say that look at what you eat/drink first.
I found salt, caffeine, chocolate and alcohol big causes of my RLS and going ‘cold turkey’ on salt (that’s everything with salt in) for a week I realised how much this chemical caused my suffering. All I am saying is that please visit this first it worked for me and my RLS was bad, really bad.
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Ducatidave
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I was working in the Middle East eating loads of processed food and cut all out for a week eating only eggs or plain chicken. The difference was night and day. It makes me think that people are too fast to turn to medication without getting the foundation correct first.
Yes fully agree, but people don’t tend to want to make that sacrifice of diet change. It means sometimes eliminating the fun foods... but if it helps your health, you begin to enjoy the “new” foods more.
I’m sure we’re too fast to turn to medication and your message is a timely reminder to try to be disciplined. It’s so hard to work out personally what food does what & for me sleep deprivation makes me grab the quick sugary fixes ( and cheese ). And of course if we approach our drs they instinctively reach for medicines & many become insulted / furious if non medical suggestions are given as some feel they aren’t being taken seriously. I MUST try the food avenue again. Thank you.
I quite agree with you, there are several things that can be done to relieve RLS symptom, (or even treat it) before resorting to drugs.
These should be tried first.
For example : I've come to the conclusion that there's too little emphasis on iron deficiency as a cause of RLS. This is despite numerous recommendations about iron therapy for RLS.
I think this probably due to people suffering severe RLS naturally want a quick solution and non-pharmacological remedies don't really produce this. It's the same with diet.
Diet can influence RLS in both short and long term.
Some food elements can "trigger" RLS symptoms within hours, this includes alcohol, sugar and caffeine. (Although some people find caffeine actually relieves symptoms once they've started). Some people's RLS is triggered by food addditives e.g. m glutamate.
Other food elements can exacerbate RLS over a longer period and in this case dietary changes may take time to have any effect.
The relationship between diet and RLS seems to be largely a matter of inflammation. Inflammation is a known mediating factor in RLS. Hence any dietary element (or any condition) that causes inflammation can excacerbate RLS.
Excess carbohydrates in the diet can generally cause inflammation. It may not be noticeable, it will be chronic inflammation and asymptomatic. Similarly oxalate can cause problems.
Different people may have different food sensitivities e.g. to lactose or gluten or other things.
It is best then to identify your own particular triggers and avoid them. Identifying any sensitivities can help. A low carbohydrate diet can generally be of help.
On the positive side there are various substance which you need to ensure you get enough of, either in the diet, naturally, or if not by taking food supplements.
These include iron, vitamin B12 and folate and vitamin D. Many people suffer vit D deficiency and people with RLS usually have an iron deficiency.
Anti-oxidant food supplements can also help e.g. celery juice contains a fairly strong anti-oxidant with neuroprotective properties.
I remember the phrase "you are what you eat" was popular in the 1960's 70's. That's when I became vegetarian. In those days when you told somebody you were vegetarian you often got quite strange reactions as if you'd done something antisocial. When I said "you are what you eat" a typical reaction might be "you don't look like a carrot"!
It appears that they don't know that alpha 2 delta ligands are recommended as the first treatment to be tried for RLS. I'm sorry I didn't previously mention this.
The ligands include pregabalin, gabapentin or gabapentin enacarbil (in the USA).
Yes, pregabalin has been shown to be effective in relieving the symptoms of RLS in up to 70% of sufferers
If you've read other posts you will see that dopamine agonists can also (initially) be effective for RLS, but if possible should be avoided because of the high risk of augmentation.
It seems you might have to inform your doctor of this.
I don’t think these foods cause it they may affect it I wasn’t 10 when I had my fist encounter never used salt till twenties had really good diet but you never know I actually think stress makes it worse the thought of the dam thing kicking in is enough to make it start
Sorry I’m giving you the wrong impression no idea if metal is the cause if only that simple some time back it pushed me over the edge in so much I woke up in a@e when I didn’t want to wake up after 60 years it’s to much like every one on this site RSL is misery
Lespenney ...... well volunteered to give us a before and after. I was so bad with my legs before I went ‘cold turkey’ on NO SALT. After one week not only was my RLS 99% better I felt some more alert and sharper. Please let me know how you get on.
I have been on an exclusion diet for years with great success. I seem to have to keep making some changes to be effective. I think this might be as I get older the RLS gets stronger so I have to fight back harder. I have gone from being awake until 5am 7 nights per week to having periods of a month with zero RLS.
I started on a gluten free diet which was very effective for a year or so. Then I moved to a FODMAP diet with no lactose, caffeine, alcohol or gluten. Again I had long periods of freedom. Aging a bit more (or developing stronger allergies or intolerances) I am now on a version of the Royal Prince Albert Hospital Low Chemical Diet. This eliminates a lot of stuff but I get some sleep which is marvelous.
Eventually I am hoping to find a long list of foods I can eat and then relax and enjoy them.
In the meantime I have found that its surprisingly easy to restrict your diet if you just think of walking around all night until your knees are buckling. Suddenly a couple of rice cakes with (low chem) chicken and rice with Bok Choy and eggs look beautifully appetising.
The big crunch comes when you find that I am one of the lucky ones whose RLS is related to food intolerances. But there are a lot of people for whom this is not the case. The only way to know is to give it a go. Easy to try it for 14 weeks and then you know.
But get your iron tested first. The simple intravenous infusion (IV) of iron saves around 50% of RLS sufferers. Now you got it ---- now you don't. My daughter (who blames me for having bad genes to pass on) was cured 2 years ago with one IV and hasn't had RLS since. My other daughter and I had zero success from an iron infusion. The only way you know is to get that ferritin up to 350 and see if your cured.
There are so many variations on RLS that you have to keep trying as many different things as you can to achieve peace without drugs if you can. If you have to go on drugs then read as many posts here to see what the experts recommend.
Be prepared to change doctors as few doctors or specialists know much about RLS and even fewer have any empathy for its victims.
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