I have intermittent restless leg problems. Late at night I get a 'pressure' in my legs and it's hard to sit still (bizarrely, getting my partner to rub my back helps to soothe it!), but it can get very bad in bed. Sometimes I get acute insomnia and part of it is incredibly restless legs. I actually literally HAVE to move them or I feel as if I am going to explode. I tend to lie there rubbing one leg against the other to try and 'sedate' it, but that generates lots of friction heat which makes the insomnia worse! It is singularly joyless and highly frustrating.
However, after more than a week of it recently I wondered if it might be the Sucralose I am eating in stewed apples. We go and pick windfall apples every autumn, in a bit of urban foraging, and because they are small and full of bruises and worm holes we stew them up in big batches. I sweeten them with a generic Sucralose (Sucralose & Maltodextrin) sweetener. I only really eat sweetener on cooked fruit, so I don't eat it all the time.
I know there's a lot of nonsense spouted about artificial sweeteners, they are one of the most tested foods we eat, but to test my suspicion I didn't have apples for a day and lo and behold no RLS. I just wondered if anyone had read anything reliable (i.e. not health fad sites) about Sucralose or had experienced this personally. I'll just point out Sucralose is not Aspartame, in case anyone is confused, it's quite different - I find it far better in cooking.
Thanks!
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Chancery
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Hi Asp, you get everywhere! Either that or you and I have remarkably similar health histories! I couldn't say what my Ferritin is like currently, but it was measured a bit less than a year ago and it was fine. I've never had any problems with iron, thank the baby Jesus.
But how about you? Do you suffer with restless legs too? I've never joined this forum before because I only get this problem seriously when I have insomnia and looking at some of the poor souls on here some people really suffer with this all the time. However, I was (or maybe not) surprised to see this is a neurological problem - that can't be a coincidence along with my Trigeminal neuralgia.
I never want to see the doctor about problems with insomnia (or anything; I've come to hate them), although they are quite severe and getting worse with every year that passes. I suffer dreadfully in winter and it's come on awful quickly this year. Normally I don't really start to suffer with it till about November/December. I'm telling you, I need to emigrate to somewhere sunnier for my health!
My son has RLS. A bit different, it's painful, and almost all the time. If you google Johns Hopkins RLS you'll find a vg site on it, if u haven't already. Low ferritin levels are strongly linked to rls, possibly at the beginning, and some people find that if they raise them high enough it reduces or goes away. In the UK I think they suggest levels of over 60, in the US higher. Low iron is found in the brain in rls, though sometimes serum levels will be fine. My son I think had anaemia before his rls started.
It's the first thing to check, anyway.
Good luck, Chancery..
• in reply to
vit D seems to be linked with iron absorption, so there is a possible link there to it getting worse in winter.
I'm sorry to hear that about your son, poor thing. But I think I've found my culprit on the UK RLS site. I'd had the insomnia first (I have a really touchy internal clock and it takes only a little thing to disrupt it) and my usual Valerian tablets weren't cutting it, so I took some OTC sleeping tablets which I use occasionally. I did this two or three nights running because it was just getting worse and worse, with worse restless legs. However, I read on the RLS site that antihistamines can cause/aggravate RLS and that's exactly what the sleeping tablets are. Oh, the irony. They really should have warnings on the packets of these things.
I had stopped taking the sleeping tablets because I caught a bad cold and was so zonked out I didn't need them. That coincided with me giving up the Sucralose, hence it getting the blame.
This is a wonderful example of correlation is not causation! All I have to do now is try the apples again and make sure it's definitely not linked, but I think it's far more likely the sleeping tablets. The only downside to all of this is I have now lost sleeping tablets as a back up for the insomnia. Damn!
What I do wonder though is why I have a dopamine problem in the first place and if there is anything I can do to help it.
P.S. Thanks for the John Hopkins tip - I'm going to go check it out.
You can get some sleeping pills from your doctor..
Its seems that we have enough dopamine in our brains but for some reason it gets blocked and cant reach where its supposed to, and bingo! we have RLS. !!
Hi Elisse. Yeah, I think I need to read up on problems with Dopamine and see if I can find out where things are going wrong. After using Asp's link to John Hopkins I've discovered Iron can be a problem even if your figures are good. I'm going to go to the doc and ask for a course of ferrous sulphate. Hopefully that will help.
Iron changed the course of my RLS. It's quite strange actually. I took it every morning on an empty stomach for a week and it did nothing for my RLS( which is limited to nighttime). Then I re-read the posts on here and started to take it at night before bed and as long as I do it that way I have no RLS for the night. Some people on here prefer ferrous bisglycinate and that is the type I take. I take just one 25mg capsule. Good luck I think you might be on the right track. By the way my doctor tells me I'm healthy as a horse. No anemia and in the 80s for ferritin. I would put "iron bisglycinate" and "RLS" in the above search box and read up about it.
Many thanks, Whitebuffalo, I went to Sainsbury's today and asked for ferrous sulphate (?) and discovered it was almost £6 a packet so have decided to go to the docs and have my blood tested first and find out about side effects before I take the plunge, plus, of course, get it on prescription! What worries me is I took iron when I was a teenager (no idea why!) and remember it was very constipating. I have IBS with constipation so I am concerned about making that worse (I'm currently on a FODMAP diet trying to improve my IBS so I'm not keen to make things worse). I'm really keen to try the iron though as I've had RLS for a long time but hadn't realised it was a real thing that I could maybe fix - I just thought it was me! Anything that could lighten the insomnia burden (I also have problems sleeping and with overheating) would be great. I'm just worried that if my iron levels are fine the doc won't believe me that John Hopkins says it doesn't mean anything and iron is worth trying anyway.
Very interesting. The iron bisglycinate is non-constipating and I can attest to that. It's actually called "Gentle" iron and I believe even states on the front of the bottle that it's non-constipating. It all depends on how much you are suffering. Since it works from the first pill for some people it might be worth trying for a couple of nights before your doctor's appointment. Are you able to use Amazon. I just paid $18 for 180 count. The other thing is I noticed an improvement in RLS when I stopped taking melatonin about a week ago. I've also been taking apple cider vinegar (ACV) for several weeks now and feel like that is helping but do NOT do this because I really can't be positive it's helping and I'm taking it for a completely unrelated condition. I am positive the iron helps. Some nights I have no RLS so I don't even take the iron. And I pretty much had it every night before the ACV and stopping the melatonin. Like you I tend towards constipation. My whole life my doctor told me to eat more soluble fiber and it never really helped. Then I read that it is actually insoluble fiber that is the best . So every morning I have wheat bran cereal which has about 6grams of fiber. It took about a week but I haven't been constipated since doing this. Read LABELS! Get that insoluble fiber into your diet! Good luck
Thanks for the tip about Gentle Iron - I'll look it up on Amazon. Unfortunately I can't use wheat bran, or lots of other fibres, because I'm on a FODMAP diet for IBS and wheat is verboten, but fibre and me have never really got on anyway. I eat a high fibre diet and have done for years but I find it makes no difference. The only things I know for sure about my gut is it doesn't like white bread (instant constipation) and any disruption to eating, or use of medications, no matter how slight, tends to bring constipation immediately.
Personally, I suspect I actually have some kind of gut motility issue caused by a neurological problem, but try convincing a doctor of that!
Couldn't agree more. Based on tests I've been told I have slow motility in esophagus. And I feel the same is true for my stomach where protein and fat never want to leave. Going to the bathroom everyday while a good thing does not get rid of other motility issues such as fullness, bloating, cramping. Good luck with FODMAPs.
Thanks! They've been very effective so far. I thought they'd cured my constipation for a while but it turned out it was Omeprazole. As soon as I stopped taking it the constipation was back - I suppose it's the good side effect! But otherwise restricting FODMAPS has been one of the bst things I've ever done for my gut. I'm actually in the reintroduction phase, but just starting out. I'm testing Polyols and so far they've been fine. I have a horrible feeling it's going to be Fructans that are my problem (that and beans & legumes), so that's goodbye bread. If I'm very lucky I'll be able to eat a little of them. It's not that I miss bread a lot, it's that I HATE gluten free bread. It tastes like cake!
Really? That's very interesting. Damn, I wish I'd been aware of that while I was taking them. I know I was having a lot of bother with RLS sitting late at night during the time I took them, but whether it actually coincided or not I can't be sure now. Still my GERD is ongoing so if I have to go back on them I can watch out for that. Thanks for the heads up.
Avoid all processed foods period. You will go into a detox mode that gets worse before you heal, just like recovering from a cold has that yuk phase prior to full recovery. Took me a year to see huge results. It was hell but I feel so much better now, I am starting 2018 as year 4 of my healing journey. It's paying off in spades 🤗
Thanks, Neoleopard, your reminder was very timely. I've been eating white flour, and far too much sugar, over Xmas/New Year and now it's time to go back to 'old clothes and porridge' as my MIL used to say. My gut loathes 'treat' food, all that constipating white flour, and my trigeminal neuralgia hates sugar with a passion. I wish I listened more to my 'dis-eases' than my greedy belly!
I began adding Hawaiian Punch flavor drops to my bottled water a few summers ago and gradually developed an odd and unpleasant sensation in my hand. A tingling feeling and a need to stretch it out that never seemed to reduce the symptom. It progressed to my legs and at night I had to continually move them to avoid the very unpleasant inability to relax them. The possible causality of the flavor drops never entered my mind.
Summer ended, I discontinued the flavor drops because it wasn't hot and my symptoms completely disappeared. Obviously the likely cause was the Sucralose (Splenda) in the flavor drops.
I tested the drops a few weeks later and those same unpleasant symptoms reappeared confirming my suspicion.
I've been completely symptom free for two years. Have your symptoms disappeared as well?
That's very interesting, Jerry - you were really lucky to be able to pinpoint it with such precision; usually untangling food intolerances is a nightmare. Yeah, I stopped using artificial sweeteners a couple of months ago now, but the RLS is still with me. God alone knows what causes it - like every other ailment I have! If only we were like cars and were only fed one thing we might stand a chance of sorting it out!
My restless leg syndrome definitely flared up after eating sucralose! I have sleep meds from my doctor, but rarely take them because one of the side effects is a stuffy nose. It's a giant catch 22, I have to take diphenhydramine (stuff in benadryl and Tylenol pm) in order to breathe. Anyway I have found that a hot bath and or aspercreme with lidocaine help tremendously. I found the aspercreme at Wal-Mart for around $6, their brand is cheaper if you can find it in stock. Hope this helps someone 😁
I'm in the UK so don't know aspercreme. I'm going to look it up to see if there is an equivalent in the UK. I assume it's a cream/ointment? What do you do with it, exactly, to help your RLS?
Hi Chancery - I found your post very helpful during an rls flare up I experienced about 10 days ago. It helped me to pinpoint that sucralose is a trigger for me. I also have to steer clear of caffeine - even some decaf coffees have too much caffeine for me. There seems to be a cumulative effect - it can build up over several days of intake and several days for my system to right itself.
Oh yes, I'm super-sensitive to caffeine. I had to give up on decaff coffee entirely and decaff tea always comes at a cost - and that's just one cup in the morning. Even the caffeine in chocolate is a big problem for me. If I combine a decaff tea with any chocolate at all, even just the coating on two choc biscs, for example, I'll be in trouble that night. I only recently discovered that excess sugar was a problem for me too, but very interestingly I find that if I have sugar without chocolate I am very restless and rubbing my legs together, but it takes the chocolate to turn that into actual twitching and jumping. I have sleep problems in general, and neurological problems AND gut problems, so I suppose if you put that lot together RLS is almost inevitable!
P.S. On my facial pain forum my name is The Woman With The Electric Teeth, so we have that sensitivity in common!
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