Nerves connected to intestines - Restless Legs Syn...

Restless Legs Syndrome
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Nerves connected to intestines

Coeso
Coeso
41 Replies

I feel that my rls is somehow connected to the nerves in my intestine or bowel, if there are any. Bowel movements seem to relieve the rls immediately and when my bowel is empty I have no rls at all. . I think this is why my rls is non existent in the morning as I dont eat a lot for breakfast but after lunch ,which is my main meal of the day the rls starts at around 5 to 6 hours after this which is the time the food has gone into the intestines. Maybe Im talking through my hat but you never know. Many people mention that when they are not well their rls is better, maybe its because you dont eat if you feel unwell. Has anyone else any ideas on this. I know it sounds silly but its an observation.

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raffs

I believe that my RLS is somehow involved with urination - if I have to go the RLS is worse. I think it is something to do with the Vagus nerve, but that is purely speculative - I've seen no research on it.

I've also found that on a restricted diet as when I am sick the RLS is often better I put that down to not eating some food stuff that was exacerbating things but it could be down to pressure on the vagus nerve too.

Definitely an area worthy of investigation.

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Coeso
Coeso
in reply to raffs

Is there anywhere or anyone where we could give our ideas. You never know, the vagus nerve may be the answer

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macewan13
macewan13
in reply to raffs

Hello Raffs,

Concerning the vagus nerve, the doctors at the hospital sleep unit who are treating me for my RLS are working on the vagus nerve. They say it has been quite successful in some cases. They offered it to me ( a course of 12 sessions of electrical stimulation). Unfortunately, I broke a rib halfway through the course (getting out of the way of an ambulance in the hospital grounds - you have to laugh) and had to stop. However, I did feel that my RLS is starting to improve. The objective is, if they feel that it has helped a significant number of patients, to produce a ‘kit’ which patients could use by themselves. It would be interesting to hear if anyone else has come across this.

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LanaCSR
LanaCSR
in reply to macewan13

OMG that is sooooo interesting!! I would love to hear how it all comes out.

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raffs
raffs
in reply to macewan13

Keep us posted, I'd love to hear how they get on.

Will they try with you again once the rib is healed?

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Alyson66
Alyson66
in reply to raffs

Yeah I get that quite badly too, ordeal just trying to wee xx

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Birmanblue

It is possible for IBS to co exist with restless legs. Sometimes food intolerances can cause the IBS. Magnesium deficiency may cause muscle problems. Supplementing with magnesium may help. As you feel better when you have rid yourself from toxins may be this is some type of digestive problem. Enzyme deficiencies such as amylase may affect the digestive tract causing muscular problems. Lipase deficiency is mentioned with digestion of fats where you may have high cholesterol muscle spasms as part of enzyme deficiency which can be corrected with enzymes prescribed by your doctor or gastro specialist.

healthhearty.com/digestive-...

Advice on eating habits and removing foods which create amylase deficiency might help too.

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Transimpact

this amylase depletion could explain why so many people get short term relief from eating high carbs and sugars ... and have a low metabolic rate ... Thanks Birmanblue I have begun to research.

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Manerva

Hi Coeso. RLS is a circadian disorder i.e. symptoms are related to the time of day. This because it is associated with levels of the neurotransmitter dopamine which are lowest in the evening and night.

When dopamine levels are at their lowest, i.e. in the evening, that's when RLS symptoms are worst.

This is one of the diagnostic criteria for RLS. If anyone experiences "RLS like" symptoms consistently throughout the day, then either they're suffering augmentation or they don't have RLS.

Only having RLS in the evening, not in the morning and not in the afternoon is typical for RLS and is entirely unrelated to eating.

This doesn't mean that what you eat or any intestinal. problem you might have aren't factors in your RLS. It could be, but they won't particularly affect WHEN you have RLS symptoms.

You can't conclude that just because you don't have RLS until 5 - 6 hours after lunch, it's eating that causing your RLS. 5 - 6 hours after lunch just happens to be evening.

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Hidden
Hidden
in reply to Manerva

Are you by any chance a neurologist? Just curious because I have never read anything as conclusive as you stated. I am not being snide, just asking.

What my understanding regarding the times RLS can cause issues fits more into the following:

" Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is resting, such as sitting or lying in bed. They also may occur when someone is inactive and sitting for extended periods (for example, when taking a trip by plane or watching a movie). " ~ National Institute of Neurological Disorders and Strokes ~

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Manerva
Manerva
in reply to Hidden

No I'm not a neurologist, but what I wrote is more or less the same as you've quoted. "Symptoms commonly occur in the late afternoon etc" is because RLS is a circadian disorder and depends on dopamine levels.

That doesn't make me a neurologist, just knowkedgeable. There is lots of literature stating what I've stated and I don't think a neurologist would disagree.

If you disagree with what I wrote, you're not disagreeing with me, you're disagreeing with what the literature says including what you yourself have quoted.

As for being conclusive, I wouldn't want to exclude diet and eating as a factor in RLS . Coeso however seemed to think that the timing of eating affects the timing off RLS., which I think unlikely, as the pattern Coeso is describes is a circadian pattern.

Can I suggest that saying "I'm not being snide", doesn't create a good impression. If you disagree with what someone writes or you take offence in some way, then the assertive thing to do is to specifically say that and why. That could be helpful.

As it is, what you write is ambiguous to me and you'll have to forgive me for taking offence.

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Hidden
Hidden
in reply to Manerva

I was just trying to clarify that my intention was not meant to be snide, I was seriously asking if perhaps you were a neurologist. So sorry you misread my intention even after I clearly stated that I was NOT trying to be snide.

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Hidden
Hidden
in reply to Manerva

Honestly... it was a sincere question.

I am clearly incapable of properly communicating with people so I am closing my account.

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LanaCSR
LanaCSR
in reply to Hidden

Don't feel bad. Manerva rubs a lot of people the wrong way, but so do all of us to an extent. Having said that, Manerva does have some good info to share with us in here. I am glad we have Manerva in this forum. ♥️

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Alison7
Alison7
in reply to Hidden

I think we can all get irritable as we are all so sleep deprived. It is also hard to always get communication right in writing ( and speaking ) & things don’t always come over the way we intend to everyone. Don’t close your account, honestly. I find this site invaluable & very interesting & with any luck between everyone we will find solutions to this dreadful, life altering condition. There is so much knowledge and so many observations in here which people kindly take the time to share. It is really worth reading. Then we can take from it what we wish. Manerva is great at sharing her knowledge & sources & I thank you for your own observations & ideas too. Progress is only made when ideas are shared. I am a retired Dr. There have been so many changes to knowledge in so many fields in my lifetime, sometimes led by very ‘ordinary’ people. I remain hopeful ( & also very tired & weary! )

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marsha2306
marsha2306
in reply to Manerva

Sometimes it’s the way things are said, not what is said. Sorry, I’ve often thought there is

a “pompousness” in the way you reply to people. I’m not trying to be “snide” either but you appear to be lecturing when you reply to people.

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Manerva
Manerva
in reply to marsha2306

Thanks Marsha, I'll take that feedback on board.

I was a lecturer, old habits die hard.

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Alison7
Alison7
in reply to Manerva

I’m not sure if that reply about lecturing was referring to me or Manerva. If me and it offends am sorry.

I like Manerva’s replies - they are factual & helpful to me. So I guess it’s hard to get it right for every reader.

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Manerva
Manerva
in reply to Alison7

It was definitely referring to me, I do lecture, it's my way of being informative but probably over the top. I've been called pompous before, the cap fits.

It's not you

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Alison7
Alison7
in reply to Manerva

Thanks Manerva, as I said I like the way you write.

I’m the retired Dr & always worry I’ll come over as a knowall clever clogs bossy boots whereas when I mention it I do so from the point of view of how the inside of the NHS works, how little knowledge we have compared to the ‘expert patient’ and please not to blame the drs. I spoke to a really lovely GP yesterday & she did not have a clue apart from being helpful about my suggestions for treatment. I saw a new consultant for my neuropathy recently who happens to be a haematologist as that’s the specialty involved in my neuropathy. I was going to ask if they’d consider giving me IV Iron - but after she said ‘have you tried all the usual things such as quinine?’ I ducked out! I did try to inform her about the Iron story & dropped Mayo clinic & John Hopkins into the conversation so she knew it wasn’t bunkum & she did say interesting’

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Elisse2
Elisse2
in reply to Alison7

Oh my Alison even after ALL these years you still have someone ask if you have tried quinine. !

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Alison7
Alison7
in reply to Elisse2

She was a haematologist so maybe I should let her off with it! Definitely the blank stare & it can’t be that bad type though.

And despite being a haematologist definitely knew nothing about the Iron story!

Yesterday’s GP did seem to know about the iron deficiency side but not the brain iron deficiency & need for high ferritin so still some way to go but she definitely wasn’t dismissive

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Transimpact
Transimpact
in reply to Manerva

... here we are discussing “other” considerations to the dopamine theory.

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Jphickory

My RLS is also associated with my digestive system. Eating too much late, drinking wine, sweets etc.. worsens my RLS. My father also had RLS and would get up and pace the floor at night belching when his RLS was at its worst. His doctor told him he believed the vagus nerve was involved.

I have noticed if I bear down, like pretending to have a BM, that my RLS immediately resides but then immediately returns once I stop the bowel pressure. This isn’t a practical remedy for RLS but interesting and perhaps an indicator of the vagus nerve’s involvement.

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Manerva
Manerva
in reply to Jphickory

Yes there us some evidence that RLS symptoms may be connected with the the vagus nerve. I think it's probably an exacerbating factor (trigger).

Alcohol (wine) and refined sugar (sweets) however are definitely known to exacerbate RLS.

Damn!

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dklohrey
dklohrey
in reply to Manerva

And, of course, caffeine. Sugar is a tough one for me as I love cookies, cakes and the like. I sometimes have to ask myself if it is worth it, knowing the results could be a difficult night. I have also read where being overweight can be an issue with RLS. Perhaps tied into the sugar thing.

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Pippins2
Pippins2
in reply to Jphickory

Ooo i will try the bearing down next time i get RLS and report back

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Goodfairy

Apparently 80%of our immune system is in our guts so more closely connected in so many ways that we realise.

Our guts are almost our 2nd brains

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Manerva
Manerva
in reply to Goodfairy

It's not the actual guts that are a brain, but there is a neural network, a visceral brain, that's associated with it.

If you think about it, in evolutionary terms most organisms started out as eating machines that just ingest and digest nutrients and eliminate wastes. All the other evolutionary characteristics are just about developing better ways of finding food, eating it and getting rid of wastes.

We're not so good at the latter!

You could say the brain in our head, is only an addition to the brain in our abdomen.

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Sampsie

I have noticed a definite link with my bladder. If I've had a trigger food or drink which has exasperated my RLS, my bladder also becomes really irritated.

I recently saw a urologist and had tests and I was told I have certain bladder issues which are caused by Postural Orthostatic Tachycardia Syndrome (POTS) which, as I believe RLS to be, is also neurological. They believe it to be brain messaging issues. So, the theory on the vagus nerve is interesting.

Whatever is causing my bladder problems, it is definitely worse when my RLS is. I think, from what I've read here about possible links with iron and the brain, and nerve messaging issues or nerve inflammation, maybe it's all to do with my brain and nerves.

Interesting.

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Graham3196

I have always associated my RLS to food in that it started with indigestion or acid reflux. From about 10 years old I solved my RLS by taking an antacid (trade name Quick-Eze) when I had the acid reflux. This worked well for 40 years but then the RLS became stronger and the antacid could no longer prevent the misery.

Now I have the RLS under control without any drugs by following a restricted diet. There are a few hiccups (pardon the pun) when the RLS returns but usually I can trace that back to some departure from the diet.

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Transimpact

Graham I too have found some relief using bicarb to alkalise and now it is not enough... what type of diet are you on may I ask?

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Eryl

My theory of why people tend to suffer more later in the day is that the triggers build up in the blood during the day, but since you don't eat while you're sleeping. the body catches up with removing them from the blood overnight. If you're close to the tipping point, the symptoms will usually appear around twenty minutes to half an hour after eating the trigger food.

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dorissweda

I think your on to somehting. I've noticed the same thing myself. It isn't the total answer but it does seem to be part of it.

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Quiltingmum

Hi Coeso

You may be right. When my legs start going crazy this often coincides with needing a bowel movement. After that the legs improve. Conversely in the middle of the night waking to pass water seems to prompt the rls. There does not seem to be a rational explanation, but then rls is an irrational condition! We have to live with it as best we can and try to not let it affect our lives too much.

This site helps a great deal, talking to people who understand and can give advice is invaluable. Grateful thanks to all who have helped me, especially with their knowledge of augmentation and giving up DAs.

Good wishes.

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Lfoba

I too have found a bowel movement to relieve RLS at night. Has anyone tried or seen anything about pressure point yoga? They use tennis balls on the small of the back (just below the top of the pelvis) in three areas that correspond to nerves going into your leg. Three on each side. They have you move the ball just below the pelvic bone and you can definitely tell when you put pressure on the ball if it is one of the three involved in RLS messaging to leg. When you apply pressure by pushing against the wall with the tennis ball in place it really provides relief that lasts a while.

So it is not hard for me to imagine that pressure from full bowels may also affect these nerves.

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RLSBOGEY

Hello Coeso,

I found many of the posts here related to my experiences. Eating sweets or drinking alcohol seems to exacerbate or bring on RLS while salt seems to quiet symptoms. I have lower back pain which always is relieved by a bowel movement. This also seems to quiet the RLS. Pressue on my lower back helps relieve the pain and the RLS. My RLS occurs during the day if I am sleepy and nod off while sitting or lying down. In a few minutes I will awake with RLS symptoms. In the evening I often have numbness in my ankles and feet but also shooting pain that comes and goes. Some evenings I have no RLS at all. I definitely have lower back pain and sciatica pain in my right leg at various times. I cannot sleep on my left side because it brings on both. All my blood tests show results in the normal range. I take 0.75 mg of ropinirole and one 5/325 tablet ( which is 5 mg of hydrocodone and 325 mg of tylenol) around 9 -10 pm. After taking these I sometimes experience RLS symptoms and sometimes no symptoms. Without taking these I would be unable to sleep because of the RLS. I posted here because I find every observation posted is similar to what I experienced and I think the gut, nerves, the brain, diet and nutrition all have effects on RLS. Pinpointing a specific remedy seems to be an endless quest at this time. I empathize with everyone and wish you all some relief from this dastardly disease.

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Alison7

I’m definitely worse if I eat late & have full stomach especially if I get reflux as well

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wilabozo

I have not seen this in the literature anywhere, but I think it's worth considering the connection between oxalate poisoning and RLS. Oxalates are high in many common health foods, including spinach and almonds. Oxalates are a known toxic, but generally our bodies are able to deal with them. But if the gut is compromised, a lot more oxalates can enter the bloodstream and form crystals with other minerals such as calcium. These crystals could be doing the damage that may be causing the symptoms of RLS. There are cases where a low oxalate diet could eliminate RLS symptoms.

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Transimpact

Coeso your comment blew me away .... yes I am sure you are on to something there. yes rls is less when i am sick, yes it is worse when I eat foods that i know my body reacts to, yes rls is worse when ibs or urinary urge is aggravated, yes rls is better when I eat vegan. However in 2015 i did a juice and herb tea fast for 40 days and rls was just as annoying as usual ... so i have to get really specific maybe .... definitely looking into this connection more ... thanks!

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