Caffeine or not ?: Hi everyone.. I'm... - Restless Legs Syn...

Restless Legs Syndrome

21,289 members14,926 posts

Caffeine or not ?

janland profile image
65 Replies

Hi everyone..

I'm experiencing another "bout" or "attack" of rls...

So not sleeping due to being woken up most nights with restless legs..

So now lack of sleep to add to everything..

I usually take an extra iron tablet and extra magnesium one and magnesium gel on both legs...

Eventually going back to sleep but it's practically every night these days.. after several weeks respite..

Can anyone tell me if caffeine..in tea or coffee would make things worse?

I've been drinking decaffeinated tea as thought caffeine would make it worse..

I'm trying not to go on drugs for this condition..

Thank you everyone.

Jan

Written by
janland profile image
janland
To view profiles and participate in discussions please or .
Read more about...
65 Replies
Accipiter profile image
Accipiter

Unfortunately not that simple. Alcohol, caffeine, nicotine, SSRIs, antihistamines; my RLS doesn't care. Results will vary for individuals.

If you are after some things to try before the drugs, ask and I'm sure we can help.

janland profile image
janland in reply to Accipiter

Hi..yes please let me know what I can try before drugs..

I have recently been put on blood pressure tablets..2 weeks ago and am wondering if this has bought it on again.. tablets are called amlodipine..

Thank you

Jan

Accipiter profile image
Accipiter in reply to janland

I can go into details later but it is basically:

Oxalates, easy to test, just meat and dairy for a week.

Iron, get the experts here to guide you on that.

Supplements.

Other diets.

Physical treatments, which requires learning and skill, but can be effective.

Look for any change, such as medication. Cause and effect plays a part with RLS, but is ignored, even by me.

A quick Google shows posts and papers that your medication can make RLS worse.

janland profile image
janland in reply to Accipiter

Really..you think or have found out that blood pressure tablets can make rls worse....oh nooooo..

My bp was so high two weeks ago that I had to have it... against my wishes really..

Also taking levothyroxine for underactive thyroid...I had a suspicion that it's connected as well..

Circadian rhythm and hormones and rls. . it's all so intertwined.

Thank you again.

Accipiter profile image
Accipiter in reply to janland

Sorry for the short answer yesterday, I was on my phone at the end of a long day.

Good and bad news that the amlodipine and levothyroxine is the problem.

Here are some previous posts at this site:

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

Also for levothyroxine:

healthunlocked.com/thyroidu...

It is beyond my comfort level to give any advice on these drugs for your situation.

I would also take it as an opportunity to review your RLS as often it only gets worse. Magnesium, potassium and iron helping is a suggestion that oxalates could be an issue. Alternatively, careful slow addition of potassium citrate, with advice from your doctor, combined with the magnesium and iron may be of benefit.

It appears once the RLS pharmaceutical train is boarded, RLS can be more difficult to treat and live with, so definitely try everything else before then.

Good luck with it.

janland profile image
janland in reply to Accipiter

Thank you soooo much for that advice and the links..

I'm one of those people who hates to take any medication but it seems almost inevitable as we age.

I much prefer to try all known alternatives first.

I'm only a smallish woman..8.3 stone so I guess any tablets from doc could be too much for my body weight.?

It'll be tricky getting to a doctor now so might have to write to him..

Might ask if I can half the dose of amlodipine..?= 2.5 mg...

I do realize that rls or periodic limb movement... which wakes one up..is a complicated issue...soooo wish more doctors knew more about it and understand how it affects our general lives so badly..

I will now read those links you kindly sent me.... and try to save or copy.

Very kind to give your time.. thank you very much...

Best wishes

Jan

janland profile image
janland in reply to Accipiter

Hi again.. just read those three links... very interesting..

It seems there's a big link between blood brain barrier...iron ferritin and thyroid hormone and dopamine..

I found another link which may interest you..its a bit heavy but in figure 1... It shows plainly what the balance should be...

I've read some of the article..

"willisekbomdiseas-restless-legs-syndrome-pathophysiology.The imbalance between dopamine and thyroid hormone theory..

From the journal of sleep disorders and therapy...

Thank you again.

Accipiter profile image
Accipiter in reply to janland

I'm not a big fan of those theories on RLS for what are long winded reasons.

But I also accept they are the only ones around, and could be right.

Find what sounds right for you, and make the most of it.

Graham3196 profile image
Graham3196 in reply to janland

Dont give up or change any blood pressure tablets without your doctor's agreement!! You can die from high blood pressure and I am told by sufferers that the high blood pressure makes you feel quite good - for a while.

Have you been through the list I sent you a year or so ago? I'll send another copy because things have changed.

In my experience diet and ferritin can be the two most effective non-drug treatments but there are lots of other things that help some people. For example just wearing track suit bottoms and warm socks helps me a little bit and if youi put a few little bits together you might get a good nights sleep. JUst to show the individuality of RLS some other people find cold helps them so how can we possibly come up with a fixed solution? You have to experiment

In my case increasing ferritin to 250 by an intravenous iron infusion didn't help at all but my daughter had quite bad RLS and an iron infusion fixed it 100% the night she had the infusion.

From what I have seen I would say that if you are forced to try the drugs treat your doctors ideas as "suggestions" and run them past the experts on this forum because your doctor can't keep up with every minority disease that walks into his surgery.

funnyfennel profile image
funnyfennel in reply to janland

My BP tablets have not increased my RLS.

Madlegs1 profile image
Madlegs1

Quite apart from rls, coffee and tea will cause insomnia. Decaf or not doesn't seem to make any difference for me.

On the caffeine causing rls--- that is simply not supported by research.

It's rather like spinach and iron, or butter and heart disease. Both myths that have been discredited, but live long in the human psyche.

The caffeine one came from a Japanese study into I forget what, but one ( yes ,just one ) participant observed that they got rls after drinking coffee. That's how the myth started.

Many people on this site have observed that coffee actually helps with their rls.

Others, that it keeps them awake ( which is what it is supposed to do 🥵)

Freshly made coffee has virtually no caffeine. The caffeine increases with the brewing.😆

I will now don my motor cycle helmet to help sustain my brain from the hail of abuse that this comment will attract. 🤓🤠

martino profile image
martino in reply to Madlegs1

The caffeine point you make is interesting. I make coffee for my wife and I at or near to 11.00am. Hers is normal espresso and mine is decaf as I had understood that non decaf would further impair my sleep. Are you saying that we could both have the espresso freshly brewed as neither would have much caffeine.

Madlegs1 profile image
Madlegs1 in reply to martino

That's what I was told by a biochemistry professor!

Give it a try and let us know how it goes!?

Some citizen science!🤓

intermk profile image
intermk in reply to Madlegs1

I weaned myself off caffeine about 5 years ago and found no difference in RLS symptoms. Over the past few months I've had days with a lot of caffeine and again, no increase in RLS symptoms. I'm glad you brought it up.

Madlegs1 profile image
Madlegs1 in reply to intermk

Thanks!👍

funnyfennel profile image
funnyfennel in reply to intermk

Me too. I have one or two coffees in the morning and sometimes go back to sleep after an early one !!

Madlegs1 profile image
Madlegs1

Melatonin is a help in getting to sleep. 200 to 300 micrograms is the correct dose.

Accipiter profile image
Accipiter in reply to Madlegs1

5 mg for me, I must insensitive; in all things it appears. Add some ZMA to reduce breakdown to give it even more of a kick.

intermk profile image
intermk in reply to Madlegs1

Melatonin is something that never helped me. I've given it a long try twice with no effect. Glad it works for others and wonder why it doesn't work for me?

Madlegs1 profile image
Madlegs1 in reply to intermk

What dose were you taking? And when?

intermk profile image
intermk in reply to Madlegs1

The max I took was 15 mg at shortly before bedtime.

LotteM profile image
LotteM in reply to intermk

15mg??!! Maybe you forgot the decimal point in 1.5mg?

Melatonin does not promote sleep, lit only helps (resetting) the onset of sleep when it has gotten delayed, e.g. owing to jetlag or working at night. This is knowledge based on many years of scientific sleep studies.

intermk profile image
intermk in reply to LotteM

Yes I stopped at 15 mg. I had two bottles of 5 mg tabs (melatonin is also available here in 10 mg tabs). I worked my way up to 3 tablets totaling 15 mg and didn't notice any help with sleep in any way.

Madlegs1 profile image
Madlegs1 in reply to intermk

15mg is simply crazy! Sorry to be blunt, but it really is at the dangerous end of the dosage.

That's why it has gotten a bad name.

I take about 300micrograms 20 mins before bed, and as soon as I feel sleepy I turn off light and set my music timer to 30 mins. Never hear it switch off, and sleep very deeply.

Loads of energy for next day. They call me Duracell bunny here!🥴

intermk profile image
intermk in reply to Madlegs1

Where do you find such a small dose? Are you in the UK. I'm in the states and the lowest dose I've been able to find is 2.5 mg. I just took a look as webMD to find that dosages range from 0.5 mg to 12 mg. Here's the link should you be interested. They say these dosages are used for blind people. webmd.com/vitamins/ai/ingre...

Madlegs1 profile image
Madlegs1 in reply to intermk

I have to get it on the inet, from somewhere in Europe.

Amazon.uk will get you there.

I get the liquid-- it says it's a 1mg dose-- but that's for a full dropper. I've measured it that I can use a proportion of the dropper ( about 3 to 4 drops) to give me about 250 micrograms. It's easy enough to vary the dose from there.

I'm in Ireland and have had no problems getting it in the post.

It will take the medical world a few years to catch up with the latest research. As usual.🤕

Good luck.

I've found webmd to be a bit out of date for some recommendations, and downright incorrect for others.

The article you link to only describes what has been tried in the past and does not actually recommend any dose as such. 🙄

funnyfennel profile image
funnyfennel in reply to Madlegs1

Interesting, I tried it years ago and it made rls worse. Will see how others find it

Madlegs1 profile image
Madlegs1 in reply to funnyfennel

Melatonin or caffeine?🤠

Caffeine may trigger "RLS like" symptoms for some people, with other people caffeine seems to relieve symptoms. It doesn't seem to affect me either way.

I don't take much caffeine in any event as it can keep me awake, even without RLS symptoms. I don't need RLS to have insomnia!

I don't know if this helps, but alcohol does trigger RLS symptoms for me, but only in the day I drink it. If something's triggering you a "bout" of symptoms (not just one night) then it may be something that you're using or taking regularly.

The "usual suspects" as RLS triggers can include -

Tricyclic or SSRI antidepressants

Proton pump inhibitor antacids (anything ending in "prazole), these can cause malbsoprtion of iron and vitamin B12.

H2 inhibitor antacids e.g. ranitidine

Some antihistamines

Beta blockers.

Some anti-nausea medicines e.g. metoclopramide, domperidone, prochlorperazine.

These don't affect everybody equally, but they are more likely to trigger RLS.

Amitriptyline had no effect on me , but an SSRI caused major symptoms.

Iron deficiency even in the absence of iron deficiency anaemia can be a factor in RLS. This can creep up on you over time, e.g. because of poor absorption (see antacids above) or a lack of iron in the diet. It could also be that you're losing small amounts of heamoglobin for some reason and your body is using up iron stores to compensate for this.

Blood tests for haemoglobin, serum iron, transferrin and ferritin might indicate if there is a problem.

Sadly, I no longer have a motor cycle helmet.

TheDoDahMan profile image
TheDoDahMan in reply to

I was just going to ask you what size and make of bike you ride. My last one was a 400 cc Honda Nighthawk. I can't find my old helmet either.

in reply to TheDoDahMan

I drove a moped when I was lived in the States (in Norway now,) so my helmet is on the the other side of the Atlantic.

rls-insomniac profile image
rls-insomniac in reply to

My last bike was a Suzuki Katana 550. Red and silver...lovely! Still.got my leather but no helmet. Those were the days! 😂

in reply to rls-insomniac

Yes, they sure were!😃 Mine was a Yamaha Vino and was maroon. I miss it so much! I donated it to Kars4Kids when we moved. I remember crying so much because it had been my first vehicle. I got a nice note from them saying someone got it at their auction; I hope that person is enjoying it as much as I did!

in reply to TheDoDahMan

I haven't had a bike since 1997. It was a Suzuki GS550. (I think). I sold it to a bike store for £200. You can't get 3 daughters on a pillion seat!

intermk profile image
intermk in reply to

Long ago I had a Yamaha Virago 700cc I think. Fun bike but dangerous in the mountains on tight curves. Got run off the road one day and sold the bike immediately thereafter. Still have the helmet in storage somewhere. I do miss that bike though.

janland profile image
janland in reply to

Hi Manerva..

Thank you for your information..

I'm wondering if blood pressure tablets that I have recently been put on have caused this flare up?

Amlodipine...

I've not had bp tablets before..

Any ideas.?

Thank you

Jan

in reply to janland

Apparently, according to several sources Amlodopine does cause RLS.

As you've not had bp meds before, you could ask your doctor to switch to something else. There is a range of options.

Heatherlss profile image
Heatherlss in reply to

Hi Manerva,

Could you point me to one of those sources ?

Apparently, I do take Amolodopine and have been for 5 years. Wonder if it started my RLS. I'm curious.

janland profile image
janland in reply to Heatherlss

Hi...yes..I was quite suspicious when the restless legs flared up again for me... having no sleep each night is very difficult for coping in the day time..

It's tricky now to get a doctor's appointment and I think one has to be weaned off bp tablets gradually ?

in reply to Heatherlss

Amlodipine is a calcium channel blocker. It seems itcan cause secondary RLS, even if you don't have primary RLS.

Here's one source, I hope you can access it, it might not be available outside the UK

nhs.uk/conditions/restless-...

Here's another

ehealthme.com/ds/amlodipine...

This is from the US.

funnyfennel profile image
funnyfennel in reply to Heatherlss

I am taking Ramipril 5 mg and it is ok

janland profile image
janland in reply to

Hi Manerva...

I would be interested in knowing the sources that point to bp tablets amlodipine being a possible cause...as levothyroxine might be antagonising rls as well..?

Thank you..

silkyreg profile image
silkyreg

As some already wrote cafeine can indeed reduce rls. I tried an rls diet including to avoid cafeine and it had no effect on me. After some cafeine free months I started to drink coffee again and it reduced my rls a bit. Then I thought drinking cafeine free coffee in the evening would be better to sleep but my legs thought differently.

What helps best for me is intermittent fasting.

Bdunwithit profile image
Bdunwithit

My RLS seems very similar to yours. It comes in phases and then goes for a few days or weeks. I have tried all sorts of things (but never drugs of any kind) but have come to the conclusion that nothing works consistently, although some things seem to work for a bit. Like you I kept off caffeine for a long while. Now, I find that during an attack if I get up and have a cup of tea it stops the twitching and the insistent 'creepy' feeling and I can get back to sleep. So, caffeine can be useful, at least for me...but it only relieves, it doesn't prevent.

janland profile image
janland in reply to Bdunwithit

Thank you for your reply..

I'll try that.. having a cuppa in middle of night...ha ha ha..

I've also come to the conclusion that my new blood pressure tablets are to blame for the latest episode of rls...

I've not had blood pressure tablets before...but now my rls or periodic limb movement is much worse and I'm hardly getting any sleep then feel washed out and tired all-day..

Someone suggested drinking more water too..

As well as iron.. magnesium and b and d vitamins.

Jumpybean profile image
Jumpybean

I have been off caffeine and alcohol for a week now and my symptoms have improved... but I have also started taking iron, magnesium, vitamin D and B complex... so I don’t know what has worked (don’t care too much either!) I will stay off the caffeine for another while and then reintroduce it and see if it starts the legs up again.

I had a blue Puch moped and a yellow helmet for a while🙂

Gillyfran profile image
Gillyfran

I stopped caffeine about two years ago. It helped. There is still a small percentage of caffeine in decaf tea and coffee but nothing like the full strength. I take Ropinirole and have done for 13 years and my legs are quite well controlled but they do have their moments and when they kick off it’s awful. I don’t know how anyone copes with the feelings when it just doesn’t stop.

Gill

Parminter profile image
Parminter

I can drink tea in the morning. But if I drink it after midday I can get into trouble.

Hi Jan!

I wanted to respond, but got caught up in the MC talk first. I apologize. I clearly still miss my moped even after 7 years.

I'm so sorry you're having trouble! One of the things about RLS that is no different than other syndromes, but which make it no less overly frustrating is that no two people experience it in the same way. Here is my experience: Caffeinated drinks....I can't have these after about 6pm or I won't sleep due to insomnia. RLS-wise caffeine ca sometimes actually help my RLS. Now sugar is a different story. If I have too much sugar in a 12-hour period I sometimes notice it negatively affecting my legs. If I have too much sugar over let's say 3-4 days, I'm definitely in for a bad RLS night.

I hope things settle down soon and you can get some sleep!

janland profile image
janland in reply to

Thank you for that.. caffeine or sugar...it's so confusing..

I do try to stick to a natural diet..but.. caffeine is natural isn't it?

Raw cane sugar could be natural...in small amounts might be ok..but its as if the body has an allergic reaction via restless legs...

Iron is good if one is slightly low..so ate a bar of dark chocolate last night...not tooooo bad a sleep...but I got rls slightly... much worse previous nights..

Thank you

Madlegs1 profile image
Madlegs1 in reply to janland

Arsenic is also natural!

As are poisonous mushrooms and various fish.

Natural, per se, is not necessarily good.!🥵

Tahoenvy profile image
Tahoenvy

For me, and i had this issue for 40 years the very best thing I have done for my RLS is drinking a ton of water. I have tried every single thing, including pain medication, Parkinsons drugs, iron, Quinine, etc. etc. But if I don't drink at least a litre of water every single day my RLS goes thru the roof. Water and lots of it.

Tahoenvy profile image
Tahoenvy in reply to Tahoenvy

By the way, I drink a LOT of coffee and it doesn't phase me

intermk profile image
intermk in reply to Tahoenvy

How on earth to do you sleep at night after drinking so much water? Don't you have to get up frequently and run to the toilet? I probably drink less than half what you drink and I have to go every couple hours at night but only every 5-6 hours during the day.

janland profile image
janland in reply to Tahoenvy

Yes..I'm afraid I haven't been drinking much water...it seems I never have that much of a thirst that I need to...but I really must try..

My daughter says I don't drink enough water...

I'll give it a try..

At least now we're all home...I don't have to go looking for loos..

Thank you

Lapsedrunner profile image
Lapsedrunner

I think that, genetically, we all of us metabolise caffeine differently.

I know people who won’t sleep if they have tea or coffee after lunchtime. It has never stopped me from sleeping.

When my RLS became a regular problematic thing and I joined this forum by chance I read about someone finding that it helped settle their legs.

This also works for me often. I used to take a flask to bed but now I have caffeine tablets next to my bed. It doesn’t seem to prevent, rather it can help to relieve.

I facepalm when a newbie is told that they should stop caffeine...it’s not the case for everyone!

janland profile image
janland in reply to Lapsedrunner

Thank you for reply..

dklohrey profile image
dklohrey

Caffeine and alcohol are probably the worst things for restless leg. I have also found sugar to be an issue. The unfortunate thing about RLS is that a lack of sleep also seems to make the condition worse. It can just become an ongoing cycle.

auntiesioux profile image
auntiesioux

The caffeine question has never been decided. Mainstream med is a definitive 'no,' integrative medicine actually uses caffeine to treat insomnia.

Bftalbert profile image
Bftalbert in reply to auntiesioux

See my posts concerning caffeine as the thing to stop the symptoms. I have severe full body RLS. I've had it close to 50 years. I've tried many drugs. Some helped. Some didn't. I found the caffeine answer on my own by accident on night. It is the best thing ever and have been using it for about 12 years now.

1/4 to 1/2 cup of coffee or 1/4 to 1/2 200 mg caffeine pill .

And yes I fall asleep at night

And yes, I drink 2- 4 shots of espresso in the morning to wake up😂

janland profile image
janland in reply to Bftalbert

Thank you for answer..

Sorry for delay in reply.

I only have 2 cups coffee in morning usually...scared to have any more caffeine during day..let alone nightime.

Do you think people are different the way they react to caffeine..?

Or do you genuinely think caffeine would help.?

I'm not on drugs for rls...but have bp tablet.. thyroid tablet and iron tablet..each day...I'm wondering if these make rls worse?

Rls I think could be a circadian problem...but unsure..

Is it connected to hormones..?

I take magnesium citrate as well...but some nights rls is still soooo bad it either stops me from going to sleep or wakes me up..

Thank you so much for your help.

Tamaroy profile image
Tamaroy

I haven’t had caffeine for months now, to be honest having problems with RLS I like to think that they are better but am really not sure.

Lin22 profile image
Lin22

I find the herb valerian very effective for RLS. It’s available from (UK) pharmacies and one 45mg tablet settles my legs in a few minutes. It doesn’t work for everyone though. It’s wise to check if there are interactions with any other meds you are on. My RLS triggers are sugar, refined carbs like biscuits, and bread after lunchtime. So I avoid those!

Midnight-Blue profile image
Midnight-Blue

You know the expression “misery liked company”? Well, I’m the “company”.! I’ve had RLS for a few years now (Got it about the time I was diagnosed with MS. Maybe a little before but it wasn’t as bad as now. My diet is erratic but I drink regular tea and my guilty pleasure is Diet Coke. Unfortunately there isn’t a magical cure for it; I am taking a prescription now but sometimes it doesn’t work right away. I’m lucky if I manage 4-4 1/2 a night

Bftalbert profile image
Bftalbert

Check out the posts about caffeine for RLS. Taken in small amount, assuming you have true RLS, it should stop it.

You may also like...

RLS and caffeine diet Pepsi

couple cups of coffee in the morning but after that I avoid caffeine. If you drink soda night, try...

Gabapentin Dose, Caffeine and Alcohol

4 bad nights and good night. I cannot figure our what is triggering these uncomfortable night...

The caffeine culprit

programme, but bad enough). Anyway, I gave up caffeine (tea & coffee) a few months ago, & my...

Sugar, white flour, caffeine and rls.

With some coffee in the middle of the night,no less. The next day and night, my legs were worse,...

Ice Cream Caffeine

of taking caffeine out of coffee ice cream. It would not only help people with restless legs, but...