The caffeine culprit

[Banana58]

I am new. Setting up an account to say what I want to say was a lot of bother. Why make it so difficult? Do you really need passwords & User IDs for this kind of site? All I wanted to say was that I saw the TV programme, and I used to have RLS (admittedly not as bad as the people in the programme, but bad enough). Anyway, I gave up caffeine (tea & coffee) a few months ago, & my symptoms gradually faded to nothing. I don't have RLS anymore. Worth a try? I was watching John (in the programme) suffering every night with a mug of tea in his hand. So I felt I had to say something.

[Joolsg]

Brilliant that giving up caffeine has worked for you. I'm jealous actually. I gave up caffeine, alcohol,sugar just about everything 8 months ago and I'm up yet again watching catastrophe on amazon because my legs are kicking off. As it's 4 am, how come you're awake if the RLS has gone?

[Banana58 in reply to Joolsg]

I still have insomnia, but I no longer have RLS. My RLS was mild compared to the people on the TV programme; I got it in the evenings while watching TV. I don't think it ever stopped me sleeping (that is another issue) but it was still very unpleasant. I stopped the caffeine, not because of the RLS, but because it was causing me migraines (sick headaches). I would drink coffee during the week at work but not at weekends; and nearly every weekend I would get a stonking headache with nausea. Aspirin was no use because, though it eased the pain, the nausea remained. I spent countless weekends in bed trying to sleep it off; I could not even watch TV without making it worse. It only took me about 30 years to make the connection. It was caused by caffeine withdrawal. When I gave up caffeine, the migraines stopped straight away. A few weeks later I noticed that the RLS wasn't there anymore either. I am sorry it has not worked for you.

[Joolsg in reply to Banana58]

I have severe RLS so every time I try to fall asleep, my legs kick off. So glad stopping caffeine has solved your migraines and the daytime RLS. As you'll see from the posts on here, what works for one person doesn't always work for another but, if one other person cuts out caffeine and it works for them, that's brilliant.

If I read of anything working for someone, I always give it a go to see if it helps- I've been trying low Fodmaps for the past few months as it seems to help some people. Sadly, don't think that one is going to work for me either.

My diet is now so boring/restrictive in attempts to get relief but, hey, apart from the bloody RLS, my health otherwise ( weight, cholesterol etc) is great as a result.

Hope you beat the insomnia and get some sleep,

Jools

[Retren in reply to Joolsg]

join the club here I am after being up all night am not feeling bright eyed and bushy tailed but finally managed to get rid of severe RLS thankful for small mercies.

[Lizzie108 in reply to Joolsg]

Hiya are you over weight and on different medications as both have a big effect on the body and can cause RLS x

[Joolsg in reply to Lizzie108]

No. Underweight for my height. I’m 5’ 8” & 59 kg. I don’t take any meds that make RLS worse ( anti histamines, anti depressants etc).

That post was over a year ago but thanks for your thoughts.

[Lizzie108 in reply to Joolsg]

Aw ok how are you now do you have symptoms still? X

[Joolsg in reply to Lizzie108]

Yes but OxyContin and pregabalin are keeping most of symptoms under control.

My RLS is caused by MS lesions in my spinal cord.

I still don’t touch caffeine but I’ve eased up on my exclusion diet. I now eat more or less what I like and it hasn’t affected the RLS so I know diet won’t help me. I do think it helps others though. We are all so different and I know what works for one may not work for another and vice versa.

[Restless1967]

Glad it worked for you . I too tried this but It made no difference to me. Its good to cut down on Caffeine and alcohol anyway

[Retren]

Banana58 10 April2017did you take the time to read others inputs?I personally have posted about diet quite often in regard to my own problems in fact the last day or so.Having dealt with this since the age of10 and am now 80 I have just about tried everything including the fact my spouse was an endocrinologist and I therefore had access to very good care.People on this site have one way or another tried many avenues we are all different and unfortunately what benefits one person does not aapply. to us all. There is one constant theme each and everyone somehow manages to get through this with great fortitude and courage for which I salute everyone.

[Hidden in reply to Retren]

Hard to explain this manic nighttime ritual to those that don't have it. I didn't enjoy watching the programme though. Especially the lady rubbing her feet on her husband. Agh, I get up at night so as not to disturb him. Why inflict this on the innocent lol.

[Eryl]

Although I found E202 to be my main trigger, I've been suspecting that caffeine is also a mild trigger. This has spurred me on to trial the idea.

[Banana58 in reply to Eryl]

I have other health issues as well. I have mild epilepsy & I suspect (though I am not sure) that it might be triggered by alcohol or alcohol withdrawal. I now eat and drink as close to nature as possible. No alcohol or caffeine. Fresh fruit from the fruit bowl, nuts, cheese, water, ginger tea made with chopped fresh ginger, quickly and simply cooked veg, meat, poultry, fish, seafood, lightly spiced. I avoid processed foods, and mucking about with food myself. After my experience with caffeine, I suspect that a lot of health issues have body pollution at their root. A build-up of too many chemicals from medications, & fake food & drink.

[Hidden]

Agree. A lot of waffle to share. Saying that coffee seems to be a problem. I haven't stopped drinking it altogether but stop at midday and this has helped. Can't believe I am sleeping.

[Hidden]

Maybe it's caffeine and stress. I have removed so many stress triggers lately, hard to do, but sleep was more important.

[Banana58 in reply to Hidden]

That makes a lot of sense. I am a very stressy person. I get upset & wound-up very easily.

[Hidden in reply to Banana58]

Stress is the biggest cause of so many health issues. Besides changing my job I came off Facebook, Twitter etc all social media and my life turned around. Instant happiness....

[Jeanniebeannie]

Just your luck and good for you but many ppl have had rls all their life me also and i dont drink coffee or take juice and have two cups of t a day and still have rls what works for one doesnt work for another

[Banana58 in reply to Jeanniebeannie]

I have no doubt that you are right, & I am just lucky that it worked for me. But, for what it's worth, I never drank a lot of tea/coffee; just one or two cups a day, & not even every day. Perhaps you could give up tea entirely for a month, just to see if it makes a difference? You can always go back to it if it doesn't.

[Mysteryv]

Gosh this gives me hope. I am going insane with RLS. I never sleep anymore. It is torture. I’ve given up my afternoon Tea but not my morning one. Perhaps I need to cut it out entirely.

[Hidden]

A lot of people do not really have RLS. They have been mis-diagnosed.