RLS: does Diet Coke and/or caffeine make a significant difference?

[TeddiJ]

Hello, fellow RLS sufferers. I'm curious-how many of you have found relief by giving up Diet Coke/artificial sweeteners and/or caffeine? I drink far too much Diet Coke-with and without caffeine-and I love it. I know everyone says it is terrible for your body and I am finally going to cut way back on the amount I drink. But, do I have to stop it completely?

I would give DC up, or caffeine, in a minute if the RLS would stop. Of COURSE I would.

I know it is trial and error but I am curious to hear others' results.

I am also trying to decide which to try to give up FIRST-diet coke/artificial sweeteners OR the caffeine.

I have found a few drink substitutes with no artificial sweeteners but they usually have caffeine.

Thanks for your input!

[Hidden]

Yes! You'll get better, more scientific, explanations from others - but I've certainly found that caffeine, sugar and some sweeteners exacerbate my RLS - as they reportedly do for many others. I've largely given up caffeinated drinks, try to avoid Aspartame (NutraSweet/Canderel), and - sometimes unsuccessfully 😕 - cut back on sugar. On the other hand, as far as caffeine goes, if you search the forum you'll find some members reporting that drinking Coke or coffee has helped them! But then again, I find that contrary to the general wisdom Magnesium supplementation controls my RLS rather than Iron.....

[TeddiJ in reply to Hidden]

Thank you!

[TeddiJ in reply to Hidden]

How much and what kind of magnesium works for you?

[Hidden in reply to TeddiJ]

Magnesium Citrate tablets. I tried other Magnesium supplements before this, including those containing Magnesium Oxide, and also tried rubbing Magnesium Oil directly on my legs, but these didn't work. Mg Citrate is much more easily absorbed.You can buy Mg Citrate in the UK fairly readily in 100mg and 200mg tablets generally recommending two a day. I found that initially I needed to take 400mg to 600mg a day, but this relieved my RLS symptoms within just a few days and one or two tabs a day stop my RLS ongoing. On the other hand, this didn't help my brother at all!

A word of warning: Mg can have a laxative effect, which varies from person to person. I don't generally find this a problem, but do sometimes cut back to 200mg a day - or not take at all for a few days - if feeling vulnerable to this.

Good luck!

[TeddiJ in reply to Hidden]

Thank you so much! I do take Magnesium Citrate and also another Magnesium supplement that combines various other kinds of magnesium into one capsule. I will keep your amounts in mind. I think that when I was on the DA drugs, the magnesium I took could not have helped. But perhaps it could make a difference now that I am mostly off of them and not augmenting!

[Hidden in reply to TeddiJ]

Various things exacerbate RLS beyond the point that Mg can be effective: e.g. in my own experience Atorvastatin. Have you also tried Ferrous Bisglycinate ('Gentle Iron')? - although I've been told this *can* take many weeks to work .

As an aside, in my personal view, ideally new RLS sufferers should try mineral supplementation before going on to any drug treatments for RLS. (Although if said sufferer is already getting treatment for other conditions, those very treatments may exacerbate RLS/inhibit supplements). I know I was lucky to stumble upon Mg for RLS while otherwise healthy!

[TeddiJ in reply to Hidden]

Yes, this has been a battle of many years, as you can see by the discussion about augmentation and DA's. I had an iron infusion in April, which I found to be fantastic and so much better than trying to keep up on the every-other-day iron supplements. I certainly am trying to get back to natural solutions-that was the entire goal of going on the methadone.

[Madlegs1]

That's the whole point of keeping a diary/ journal of your intakes.You will quickly discover what sets your fizzies off.

😎

Everyone is different.

[TeddiJ in reply to Madlegs1]

Thank you!

[TeddiJ in reply to Madlegs1]

One huge reason I never did the diary is because I was augmenting on ROP and Pramipexole for years-toggling back and forth between them. So, it seemed pointless to worry about anything else I was doing. I am probably still withdrawing from the DA's, even though I was able to take Methadone to get off of them for 2 months, from August to Oct. That doctor wouldn't give me more and I went through some awful nights of METH withdrawal and I also went back to the DA's in pure desperation. Pure hell.Now, I have more Methadone from a new doctor. But, I have ruined my streak of going without any DA's and still unsure what I will do long term. He doesn't want me on opioids long term, contrary to the research. Although at least he gave me more Methadone, for now. He asked me to try Horizant and gave me a sample. We shall see. So, now I will try also cutting the artificial sweeteners and caffeine-per this latest doctor.

Thanks so much!

[SueJohnson in reply to TeddiJ]

Horizant won't help you until you have been off the DAs for several weeks although if you plan to continue with the Horizant, it is a good idea to start it ahead of coming off the DAs since otherwise it would take a few weeks to be effective.

[TeddiJ in reply to SueJohnson]

Thank you! It's complicated because I was off of them for over 2 months but then ran out of methadone and had a withdrawal from that. OMG. Worst night of my life, as my whole body had RLS, plus massive heat and sweating. I did not think that would happen on such a low dose and after such a short time. So now I'm terrified of THAT withdrawal and not just the DA issue.

I have Methadone now again, temporarily, and last night I did not take any DA's, to try to keep things less complicated and to get back to my good streak. But, I did take very small amounts of Ropinirole for about 10 days or so. Not sure how that will affect the Horizant trial. Doctor said to try it one night at about 5 p.m.

I am in such a mess now-worse than before when I was on the DA's, I fear.

Thanks for your input.

[SueJohnson in reply to TeddiJ]

Trying it one night won' t do anything.

[TeddiJ in reply to SueJohnson]

I thought that as well, but it is what the doctor suggested. He gave me some samples. He knows I hate Gabapentin and said this was different. We shall SEE; I am not holding my breath.

[SueJohnson in reply to TeddiJ]

why do you hate gabapentin?

[TeddiJ in reply to SueJohnson]

I felt that it didn't do anything and I had weird eye pain and eye issues.

[SueJohnson in reply to TeddiJ]

That's strange and I never heard of it being a side effect of gabapentin. I wonder if it was just a coincidence. And if you felt it didn't do anything it may have been you weren't on it long enough. It usually takes several weeks to have an effect. And it also may have been you didn't take enough. I take 1500 mg. But horizant, although it too will take several weeks has only one strength so if you do end up trying it, it may work once you are off DAs for several weeks. It's too expensive for me in the US.

[SueJohnson in reply to SueJohnson]

I take it back. Horizant has more than one strength. The recommended amount is 300 to 600 and can go higher taken at 5 pm with food.

[TeddiJ in reply to SueJohnson]

Thanks for the info, Sue!

[TeddiJ in reply to SueJohnson]

FYI: The eye issues and weird pains weren't a coincidence as they happened every time I took Gaba. I am fairly sure it is a listed side effect, as I remember looking that up. But, I will keep your comments in mind!

[Joolsg]

The only constant in RLS is that WAAD. (We are all different). Start dropping one thing at a time or you won't know whether it's the artificial sweetener or the caffeine. A daily diary is your best option to identify triggers.

[TeddiJ in reply to Joolsg]

Hi and thank you!

[MumofSam]

Difficult one. I’d say that this sort of thing is very personal. I’ve had RLS since birth pretty much, and so was definitely not having sweeteners, caffeine, alcohol etc. I’ve only ever noticed my body’s natural circadian rhythms affected how much I suffered, until Tramadol totally messed my brain up. Now I suffer pretty much every night, though I think it still gets worse depending on my body’s natural rhythms. My RLS is definitely stress related and always has been.

[TeddiJ in reply to MumofSam]

Thank you!

[Rwall]

It certainly does for me!!!! Some nights are really bad, and when I track back to what I ingested that day, Diet Coke is usually the culprit. Then again, anything with sugar also sets me off, especially bar b q sauce. As Madlegs says, keeping a journal of what you've ingested and how you feel is really important. Some days, though, I just have to have that Diet Coke, knowing I will suffer the consequences later...but at least I know! Best of luck!!!!!

[TeddiJ in reply to Rwall]

Thank you!

[TeddiJ in reply to Rwall]

Also-see my reply to Madlegs. Thanks!

[Madlegs1 in reply to Rwall]

There are so many substances in those drinks and sauces. Msg, artificial everything etc.I get my tang from a tinch of natural Orange juice and natural sparkling water. Hits the back of the throat without all the nasty reactions.

[Rwall in reply to Madlegs1]

Great idea!!! I shall give it a try. Thanks for the suggestion!

🙂

[macramegirl]

I have one mug of caffeinated coffee every morning. I never drink colas nor do I use artificial sweeteners. Yet I get terrible RLS every night!

[TeddiJ in reply to macramegirl]

Yes, that is what I am afraid of for myself. But, it is definitely a good idea to cut out artificial sweeteners, no matter what. So, congrats on that!

[BBMBRB]

In the UK there is a no sugar no caffeine coke - not sure whats in it though

[TeddiJ in reply to BBMBRB]

I'm sure it is the same as the US-probably aspartame. I will try to give up the artificial sweeteners first and see what happens.

[murano]

i think anything stimulating like sugar coffee is making RLS worse depending on the person and what is causing your restless legs .my partner has it from Dialysis and low iron .He takes oxy and lorazapan to calm it down .in NZ there something in heath shop called INSTANT CALM makes quite a different Good luck

[TeddiJ in reply to murano]

Thank you! I will check that out. I had thought that when I got off the dopamine agonists for 2 months, along with the iron infusion I had in April that had upped my ferritin, that the RLS might be gone or at least manageable with natural solutions. But now I have the methadone withdrawal issue and really unsure what I should do long term. I often wonder if the DA withdrawal takes much longer than they think. One poster on here said he thought that was true. Thanks for writing!

[murano in reply to TeddiJ]

why where you on methadone ? Are you drinking enough water that might help but withdraw from things seems to increase my partners RLS .But Dialysis is tricky and low iron levels make RLS worse Magnesium helps .i brought a book about RLS Its very imformative its by Robert H Yoakum

[TeddiJ in reply to murano]

The latest research suggests using low-dose methadone, or other opioids, to get off the DA's (ROP or PRAM), which eventually cause augmentation in most people. They certainly caused it for me, although I didn't realize what the issue was for so many years. Thankfully I found this forum!

[Tanker1]

Everyone is different. I have RLS/PLM (mostly PLMS). I gave up caffeine for a month and it made absolutely no difference. I also gave up alcohol at the same time and it made no difference. So the bad news was I still had RLS/PLMS. The good news was I could return to my vices :-).

[TeddiJ in reply to Tanker1]

Lol-I hear you! Thank you!

[Jerry57]

If diet coke and/or caffeine doesn't worsen your symptoms, I would keep drinking. I know that caffeine helps my RLS symptoms, so I drink lots of black coffee. In fact, I take caffeine tablets sometimes when coffee is inconvenient. Having said that, my brother says caffeine makes his RLS much worse, and avoids it like the plague. Both of us have had RLS since our early 40's and are now in our 60's. Both of us are taking an opiate to treat our RLS.

[TeddiJ in reply to Jerry57]

Thank you so much for writing and for the info-so interesting, especially since you are brothers!

[TeddiJ in reply to Jerry57]

PS-do you sleep ok, with all of that caffeine? I know nothing is worse for sleep than RLS, but just curious!

[TeddiJ in reply to Jerry57]

PPS...lol. What exactly are you taking for the RLS...which opiate? I am on methadone and take about 7 mg. But, my new doc does not want me on it for long. Omgosh-what to do. I had one night without it, after only 2 month on it to get off the DA's, and I had the worse night of withdrawal in my life. Absolute pure hell on earth-RLS all over my body times 8000, plus intense sweating and rocking and jumping while the minutes ticked by slowly. I was able to get a new doc and another prescription-for now. (insert terrified grimace emoji here).

[Jerry57 in reply to TeddiJ]

Sorry about all your suffering. I can only imagine.

I only take caffeine in the afternoon, when my RLS symptoms begin. I usually don't use caffeine in the evening, because the opiate relieves my RLS from evening to the next morning. Then my RLS kicks in at mid afternoon, and the caffeine can buy me a couple hours before I take my next tramadol.

I take 250 mg tramadol, and I've been on it 20+ years. My brother takes Buprenorphine, which I hear is stronger than tramadol. My PA was old school, and had no problem prescribing tramadol a couple decades ago, but today everyone has to be so careful. Perhaps your Dr. will feel more comfortable prescribing a less potent opiate, and see if that will relieve your symptoms. According to this list, methadone is stronger than tramadol.

danapointrehabcampus.com/20...

[TeddiJ in reply to Jerry57]

Thanks so much!

[Hidden]

I drink coffee day or night has no worse affect on my RLS in fact a few members on here find caffeine actually helps their RLS. I can eat sugary food no problem i don’t drink fizzy drinks just don’t like them much. Only alcohol made mine worse one Christmas it was wine so never touched alcohol since 😊

[TeddiJ in reply to Hidden]

Thank you!

[DJDeniseDJDJoe22]

I have stopped drinking most all sodas for the past week now and it’s a miracle of how much of my RLS has been relieved. I did read online that the only soda without the aspartame is Diet Rite Zero so I bought some and it’s actually pretty good and has not affected my RLS as yet. I only drink one per day though.

[TeddiJ in reply to DJDeniseDJDJoe22]

Congrats on that! I'll ck the Diet Rite Zero out. I switched to a brand called "Zevia." Their intent is to imitate the various popular sodas without the unhealthy ingredients. The liquid is clear-no coloring- and they use stevia. If nothing else, the switch allows me to continue that ritual of opening a can without ingesting the aspartame, etc. Currentl I am drinking the black cherry with no caffeine and the cherry cola with caffeine. But, the jury is still out as to whether stevia is truly natural.

[DJDeniseDJDJoe22]

where do you find the Zevia? I’ve never seen it.