Water and sugar

[Theonlypetied]

I’ve recently been told that RLS is made worse by consumption of sugary foods and drinks. I’ve also been told that RLS can be improved by drinking plenty of water throughout the day - upwards of 2 litres. I do know that drinking alcohol makes my symptoms worse, so I steer well away from it. What do others think?

[Hidden]

Hi Only, did you start a new medication 6 years ago? Melatonin, SSRIs, testosterone, PPIs, statins, Benedryl, will all make the symptoms of RLS much worse. Sounds like you went from 0 to 100 overnight which is unusual for RLS. That’s why I ask.

[Theonlypetied in reply to Hidden]

Hiya. Started Pramipexol 4 1/2 or 5 yrs ago. Started on one a day until augmentation. Increased quite quick up to 5 per day. Have been on 6 per day for quite a while now. It’s been aMiracle drug for me…until now.

[Hidden in reply to Theonlypetied]

What other non-RLS drugs are you on.

[Hidden in reply to Hidden]

If you don’t mind me asking.

[Theonlypetied in reply to Hidden]

- Oxactin 20mg - Antidepressant.- Mometasone allergy spray.

- Latanoprost for Glaucoma.

- Paracetamol - for Global pain.

- Ibuprofen - Global pain.

- Citirizine - for Itchy skin .

- Tamsulosin for enlarged prostate.

- Bisoprolol Beta blocker for heart palpitations.

- Neproxin for joint pain.

- Omeprazole for Neproxin.

- Codine for global pain.

- Fultium D3. Vit D capsule

[Hidden in reply to Theonlypetied]

Some one will be along shortly to tell you how to very slowly wean off the DA. I want to primal scream right now. You are pre-disposed to RLS and would probably not even know you have it but for the SSRI you’re on and the Omeprazole. Then instead of realizing this your doctor threw DAs at you which has put you in your current predicament.

RLS is just a term for a lousy dopamine transport system probably caused by brain iron deficiency with a genetic component. Well that’s us, small and few D3 dopamine receptors and low brain iron. Iron is like the glue and grease that keeps the receptors humming along. Since we can’t seem to store iron we rely very heavily on that free floating iron in our blood. That iron in the blood plummets at night and we get RLS. The non-RLS world isn’t affected by this drop because they have plenty of stored brain iron to turn to at night.

Sounds like for most of your life RLS was not an issue for you. You need to get back to that point. You have to wean off the SSRI and Omeprazole before you wean off the Prami. On the bright side, these two drugs only make the symptoms of RLS worse, because they are dopamine antagonists (versus the dopamine agonist you are also taking), they do NOT down-regulate our already lousy receptors. The DAs, which make you feel good, are the drugs that cause the down-regulation of our receptors thus requiring ever larger doses.

Like you, I took a drug (melatonin) that turned my mild RLS into the devil incarnate and I never made the connection. Anyways, I went on-line looking for treatments. I read about taking iron at night and it worked, that very first night and every night until I raised the melatonin from .5 to 1.0. Then the iron wasn’t enough. Eventually I read on-line about how melatonin is bad for RLS. The day I stopped the melatonin is the day my RLS went quiet. Really quiet. I believe that the melatonin up-regulated my receptors and as painful as it was, it gave me about a year reprieve from any symptoms of RLS.

Think about taking 25 to 50mg of ferrous bisglycinate on an EMPTY stomach about an hour before bed provided you know for sure you don’t have iron overload disease. Also, think about fasting from dinner time till breakfast every night. The iron and fasting may even be enough as you’re drawing down on the Prami (and off the SSRI andPPI), but as you get to the end you will need heavier hitting drugs.

The idea is to get off the DA and give your dopamine receptors a chance to crawl back to baseline with the least amount of suffering possible. And I have a feeling your baseline is pretty darn good. So you can’t get complicit. There’s no reason to stay on the opiates or Pregabalin forever. Plus, I believe (though not many others will agree) that the SSRI and Omeprazole have been protective of your receptors and you might have a slight advantage there as you wean off the DA.

Good luck

[Theonlypetied in reply to Hidden]

Thank you for that most interesting and helpful reply. I have been on antidepressants for 20+ years. The Omeprazole for about a year to look after my stomach from taking Naproxen. The anti-inflamitaries and painkillers help me keep working and walking as I get random global pain. The Pramipexol has probably kept me alive as I’m not sure I could live with RLS like I get it. Hope that clarifies a few things.

[Hidden in reply to Theonlypetied]

Well you know what you must do to feel better 🤕I think you will be pleasantly surprised at how much better you will eventually feel. I wouldn’t have suspected that you started the Prozac 20 years ago and the Omeprazole one year ago. I would have suspected you started to take them when your RLS got worse… 6 years ago. No matter what, you must switch them out for RLS friendly drugs as soon as your doctor allows it.

It sounds like you have a condition that causes all over pain. Do you have a name for it? Did that condition start about 6 years ago? A lot of times inflammatory conditions will elevate a hormone in your body called hepcidin because the body thinks it’s under attack by an invader. This hormone makes sure iron doesn’t get into the bloodstream from the GI tract or from your stores. This means less iron to your brain. Less iron to brain means worse RLS. It’s a neat little tool Mother Nature gave us because every organism on earth, including microbes, loves and needs iron. By restricting iron, our bodies, via hepcidin, are trying to starve out the invader. It’s harder to do something about that though because it’s out of our control whereas switching out the meds is in your control. Most people with RLS will switch to Wellbutrin it’s the only RLS friendly SSRI.

Instead of Omeprazole take zinc carnosine to prevent ulcers or gastritis. You don’t have reflux and I for one find antacids are poor preventatives from NSAID induced gastritis. Zinc carnosine is by prescription in Japan. They may be the ones who discovered how phenomenal it is for ulcers and gastritis. It is over the counter everywhere else. Never take any zinc product on an empty stomach. It will make you nauseous until you eat something. Even zinc cold lozenges have a warning not to take on an empty stomach. My favorite brand (and sadly most expensive) is called Natures Lining. My favorite brand for the ferrous bisglycinate is called Gentle Iron. It provides me with complete relief from RLS within one hour but only for the night. Must be repeated every night. There are several of us who get immediate relief from the iron and others not. There are others who get relief by raising their ferritin levels-very very high. At least over 200 and closer to 600. First see if you get any immediate relief then we can talk about raising it sky high

Hopefully Eryl will be along shortly to tell you about the best anti inflammatory diet. No matter what your diet by day is you should really stop eating several hours before bed. Do as the caveman did. He worked and ate with the daylight and slept in the darkness. We do best when we follow that circadian rhythm and don’t buck up against millions of years of evolution.

When it comes to tapering off the DA and finding a substitute for the 3 to 6 months it takes your receptors to return to baseline (from having been down-regulated by the DA) I would use and abuse Jools or Sue or Lotte or Madlegs and actually several others. They have all been where you are and have all come through it with flying colors. I have never been on a DA and have not read as much about it as I have read about how to up-regulate our receptors somewhat naturally.

[SueJohnson in reply to Hidden]

Trazodone is also friendly to RLS.

[Hidden in reply to SueJohnson]

True. Is it me or does it seem like an awful lot of people with RLS (even before symptoms develop) have depression? I wonder if that’s part and parcel of having a lousy dopamine transport system rather than a lack of serotonin. I read that we haven’t even scratched the surface as far as depression goes and that SSRIs only work because they make people happier and would do that to anyone. It’s not that people with depression necessarily have less serotonin it’s just that more of the happy neurotransmitter the better.

[Zyxx in reply to Hidden]

Gotto say - I don’t think so. There are many types of depression, depending on the neurotransmitter which is in low supply, or too rapidly transported in the brain. (The SSRIs target the transporter molecule, hence the delay in uptake.)

Julia Ross (see The Mood Solution and her website) has a questionnaire that helps one figuring out which neurotransmitters are low. Of the ones we know about for now, anyway.

In my case everything seems low. I definitely think that iron deficiency is a cause of low dopamine depression. I take s-adenosyl-methionine for that, and so long as I’m on it, dopamine is ok (when I don’t take it I spend the winter in bed, when I do take it I’m out of bed in a week, the action is very clear and reliable. Have taken it off and on for 15 years, the results are always completely predictable.)

As you know, it’s not at all clear that people who benefit from SSRIs really have low serotonin (although there is a gene for serotonin with 2 variants, one of which produces more than the other.) The real mechanism is not definitively known, but it may be that more serotonin, through slower reuptake, over time helps in building new cells in the hippocampus, which alleviates depression and anxiety. Alternatively it could be the SSRI’s anti-inflammatory action that aids in relieving depression, since depression is increasingly seen as an inflammatory state.

What is really not the case is that SSRIs would make everyone happier. I have known scores of people who took them. As you may remember, it was posited for a while that SSRIs have no more than placebo efficacy. Which i knew to be untrue, from my own experience - I’m not very susceptible to the placebo effect, anyway. But after some years, this was updated to: SSRIs have placebo effect for those with mild depression, and genuine efficacy for those with severe depression/anxiety.

And that’s what I’ve seen around me. The people I knew whose issues were obviously not all that crippling often complained that all the Ssri did was make them feel numb. The serious sufferers, on the other hand, had a lot of relief but only after months, and after initial worsening of symptoms. It seems that the worse you feel in your first months of being on SSRIs, the more they will help you when they truly kick in. And none of the people whose anxiety and depression were very serious before they started the SSRI ever complained of being “emotionally numbed” by the medication.

But, by god, if I didn’t have to be on them I wouldn’t be. Worsening of RLS is just one of the reasons.

[Hidden in reply to Zyxx]

I can’t argue. I am not well versed in treatments for depression. I’m Jewish. Anxiety and depression are my genetic default mode. “Happiness” comes in moments here and there. I know no other way. I know mine is not “clinical” so I don’t even want to compare me to you. I recently started Delta 8 CBD as an alternative to iron. Doesn’t seem to stop the RLS but I like the way it modulates my sense of well-being and I feel it enables me to be present in the moment and not over think things. I will have to figure out a way to do this on my own. It’s nice. It’s nice to just live life and not think so much about it. To just sit back, relax and enjoy the ride. Ha! Never gonna happen. That’s so not in my DNA. Maybe next life.

[Zyxx in reply to Hidden]

Yeah…I hear you. A scrap of good feeling here and there can be stolen from life, but it never lasts, and you can never count on it. I’m not terribly taken with the idea of existence;Hadn’t heard of Delta 8 CBD before - I tried CBD several times but never felt the least bit effect. Slept well, last winter, on THC oil, but had to titrate up pretty soon, and when I read that THC disturbs REM sleep I quit.

I would dearly love to stop the SSRI, but I get too ill. I’m glad you don’t have to take them, though. Much better that way.

[Hidden in reply to Zyxx]

Who does like this existence? Don’t even get me started, you’ll be up way past your bedtime. Almost seems silly at times and pointless.

With that said, our allegedly infinite physical universe is so mind blowing that it’s ALMOST worth the price of admission. The price being extraordinary pain and suffering. Then there’s the woo woo spiritual realm that is equally as mind blowing. At least per the stories told by people who have had near death experiences. Their stories resonate more with me than any biblical passage.

If you need an SSRI then so be it. I consider all medicine sacred and I always thank the forces that be for these medicines. I gotta find this one NDER’s story. I think you will enjoy it.

[Hidden in reply to Zyxx]

Can you try Wellbutrin instead? Here’s the nde story I was thinking of. Will make you smile. m.youtube.com/watch?v=R8o2r...(Not working as expected?) .

[Zyxx in reply to Hidden]

That is a great reply, and I’m saving it.I do have to mention that taking iron every day can be dangerous. You did say to make sure one doesn’t have iron overload, but even beyond that, too much iron can get you in real trouble, as it’s highly reactive and creates free radicals.

That’s why I, personally, take as little iron as will do the job, always very very careful. And I take floradix, which I think is better absorbed and on the whole possibly better as a supplement than straight ferrous bisglycinate.

Everyone do with that what they will, just felt I had to mention it because it’s pretty important.

[SueJohnson in reply to Zyxx]

The problem is floradix has only 10 mg of elemental iron as opposed to 65 mg in ferrous sulfate but in your case I guess that is what you want. You are certainly not taking too much iron with it. Have you had your ferritin checked? Improving it to over 100 helps 60% of people with RLS.

[Zyxx in reply to SueJohnson]

I take a lot of floradix, when needed. It’s better absorbed than the pills, anyway. It always seems to do the job, whereas last time I tried iron pills they didn’t seem to help.

[SueJohnson in reply to Zyxx]

Yes they are better absorbed and I am glad they are are doing the job for you.

[SueJohnson in reply to Zyxx]

By the way, you say you don't want to take too much iron, have you had your ferritin checked?

[Zyxx in reply to SueJohnson]

Many times, in the past, but I don’t do it anymore. I usually know when my iron status is getting low again, although last year it took a veterinary friend to diagnose me, true story…

[Hidden in reply to Zyxx]

You have to pick your poison. I’m always trying other somewhat “natural” substances, but nothing quite works like the iron. Complete relief in one hour. Does the iron have an immediate effect for you as well?

[Zyxx in reply to Hidden]

Not at all, San. Iron supplements, even comparatively good ones, don’t seem to do much for me. Floradix does work, but it will take a while. At least several days, and that’s when I drink large amounts of it. Otherwise, 2 weeks, I guess. Amazed that it works in 1 hour for you!

[Hidden in reply to Zyxx]

You don’t raise ferritin in a couple of days, so there’s another reason the iron is helping you. I believe it’s because you’ve raised your serum iron with the supplement. As I’ve said before, since our brains are bad at storing iron for a rainy day, we rely VERY heavily on that free-floating iron in our blood.

I can practically set my clock by my RLS. Kicks in at midnight. Midnight is the “nadir” of that free floating iron in the blood. So yes, taking 25mg of ferrous bisglycinate on an empty stomach at midnight means my RLS will be gone in an hour. Or if I take it earlier then I won’t feel the RLS at all that night.

[Joolsg in reply to Theonlypetied]

Oh my word. Omeprazole, beta blocker, and anti depressants all worsen RLS.

Pramipexole causes augmentation.

I suggest you slowly start reducing the Pramipexole by half a 0.088 pill every 2 weeks.

Discuss alternative anti depressants with your doctor. Trazodone and wellbutrin are safe.

Discuss alternatives to Omperazole. Consider changing diet and taking Symprove or VSL probiotics to deal with gastric issues. Or try magnesium based antacids.

Beta blockers may be more difficult. Do you have atrial fibrillation? Discuss with your doctors and tell them beta blockers worsen RLS.

Get full panel bloods and ensure serum iron above 60, serum ferritin above 100, preferably 200.

However, your main issue is Pramipexole. Get off that and the severe RLS will reduce.

You should ask doctor for alternative meds to start when you reach 0.088 of Pramipexole.

Pregabalin and gabapentin are commonly prescribed after Pramipexole but if you are overweight or have heart issues, discuss fully as low dose opioids may be a better option.

Read everything you can about RLS, starting with Augmentation and the Mayo algorithm.

mayoclinicproceedings.org/a...

rls-uk.org/augmentation-reb...

Once you've dealt with your augmentation and are off Pramipexole, you'll find that food and drink triggers are totally unique to each person.

I have no food or drink triggers.

[dklohrey in reply to Theonlypetied]

Just as a side note here. I am 75 years old and was on a beta blocker for about 30 years for heart palpitations and high blood pressure. I started having problems with my heart about 2 years ago, with my heartbeat going to about 50 beats a minute. My heart specialist changed my medications from the beta blocker (metoprolol succinate) to amlodipine besylate 5mg. Within two months I lost 30 pounds without even trying, my heartbeat returned to normal and I have very few if any palpitations during the day. The change, especially with my weight, was amazing. As is always mentioned in this column, everyone is different but if you could rid yourself of the beta blocker, it could help your rls, as beta blockers have been known to trigger rls.

[SueJohnson]

Joolsg has excellent advice for you and definitely check out the link she provided you for the Mayo Clinic and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist. Let me just add a little to what she says. ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. As Joolsg mentioned, you want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. On reducing the pramipexole, you will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. Ask your doctor for a prescription for gabapentin. Beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[Emiloupi]

I definitely agree with the sugary foods, also simple carbs and fatty foods with high fructose corn syrup. Best to stick with natural, Whole Foods and mostly my symptoms aren’t there… aside from the occasional binge 😬

[Lyndabutt]

Hi yes my RLS is worse when I have sugar.I only discovered that recently.I will try drinking more water .

[RCHD]

For sure stay away from processed foods and sugars…

[CookiePooki]

Whatever works different for everyone

[C42105]

Hi Theonlypetied! I don't have RLS symptoms everyday (fingers crossed...). But, in my own experience with RLS, if I dehydrate during the day, I'm 100% sure to get symptoms that night. I need to be monitoring my hydration and liquid intake constantly. If in doubt, I drink water. Problem is that from too much drinking (and peeing), you have to keep an eye on your electrolytes and take salty or mineral-rich foods. This is even more important if you exercise and sweat. But this discovery has been a game changer for me!

For this reason, I hardly drink any alcohol, coffee or tee (as they are strong diuretics). If I need a boost, I eat dark chocolate, which 'wakes me up' a little and has minerals in it. But, I do have plenty of sugar and haven't found any adverse reaction to it...

Good luck!