Why does RLS disappear upon standing.... - Restless Legs Syn...

Restless Legs Syndrome

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Why does RLS disappear upon standing.? I don't have clue. Believe it or not ;)

25 Replies

I read some older articles about how epinephrine and norepinephrine levels rise (somewhat dramatically) but NOT dopamine when we go from a supine position to a standing one. I have no idea if this is why our RLS is relieved upon standing.

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RLS symptoms do not disappear when standing, thats why people have to pace up and down. Even then people will report that they still have the symptoms, pacing can give some relief. I have never found standing gives any relief.

Ok, you tell me, why does pacing give you relief?

You tell me...! Should be interesting....

I look to you for guidance in this area. Plus the standing, pacing part intimidates me. It's like looking into the abyss and having the abyss look back at you. I think it's something we have to accept WITHOUT question and be happy about it. Like the fact that god created the universe. We can never question then "who created god." I think the world will implode if we discover the answer.

Strange reply.....

Nothing and I mean nothing is stranger than a disease that disappears upon pacing. Could you imagine a world in which we could cure cancer by pacing.

nightdancer profile image
nightdancer in reply to

the word cure should not be used with the word pacing. Pacing is a distraction, but certainly not a cure.

Are you sure you know anything about RLS...?

in reply to

I know nothing, that is why I am here. Please guide me.

nightdancer profile image
nightdancer

My RLS makes me pace, but it is only because I cannot stay in bed or seated. But, it can be just as irritating in any position when RLS REALLY kicks in.We just had this discussion in one of my groups, and many, many people report the pacing is only a slight distraction, as for me, and it has never relieved my RLS, ever. When I jump out of bed, it is about 1 second relief til I have taken my 3rd or 4th step, and the pressure on my feet seems to actually aggravate it. That RLS "feeling" has never disappeared for me doing that. We just keep moving at those times, because it is still preferable to thrashing in bed. Lots of stretching, and pressing my legs up against the wall, while on my back works MUCH better for me. We have to remember that with RLS, as in many conditions, what works for ONE does not always work for everyone, so generalizing things is not always the best thing. That is about the only RLS "rule' there is. My mother says she can testify to that. We live together and she sees me 24/7. ;)

in reply to nightdancer

I will pray for you and your mother. I think you suffer the most of all.

lanie136 profile image
lanie136 in reply to nightdancer

The only relief I get is to pace but I can't do it all night. And in the past if I can make myself stay in prone position, eventually I could go to sleep but if I got up for some relief, it just extended the time I could get to sleep. None of that works now, i.e. now I'm up all night and fall asleep about 6-9 in the morning after pure exhaustion.

DesertOasis profile image
DesertOasis in reply to lanie136

I’m the one who posited that question as it was driving me crazy. Subsequent articles revealed that dopamine is released when we stand and walk.

The other thing I know is that ALOT of drugs make the symptoms of RLS (not the disease itself) worse than they have to be. The worst offenders are SSRIs, Amitryptaline, HRT, melatonin and calcium channel blockers.

I take around 50mg of ferrous bisglycinate on an empty stomach an hour or two before bed and it completely stops the RLS - for one night. There’s a long and complex reason for this. I have to take it every night.

lanie136 profile image
lanie136 in reply to DesertOasis

I've had RLS for over 70 years and the older I get, the worse it gets but it's always been bad and disrupts my life a lot. I've tried 4 different drugs and within 2 weeks they stop working and I have withdrawal symptoms even though it was such a short time so for my lifetime I walk the floors in the night, I take 1 or 2 or 3 very hot showers during the night, I have a heat/vibrating machine,my husband when he awakens in the night, rubs my back, and my iron level is at 105. I wonder if other tests for iron should be done. My mother and my father, I was told, took iron shots

DesertOasis profile image
DesertOasis in reply to lanie136

Do you have a co-morbid condition since a young age ie Celiac Sprue, hypothyroidism? I, and probably I alone, on here thinks that everyone, no matter how high or low their ferritin is, must try the ferrous bisglycinate at night trick. ESPECIALLY someone like you who never down-regulated their receptors via the dopamine agonists. The brand name is Gentle Iron by Solgar and costs $10 on Amazon. I know there’s other brands but I like that one.

This is the thing, whether your ferritin is 5 or 500, your serum iron plummets at night. Iron is the grease and glue that keeps the world’s dopamine receptors chugging along. Since we with RLS have so little BRAIN ferritin we rely very heavily on that free floating serum iron. The non-RLS world is not bothered by that drop in serum iron because they have much more brain ferritin and much more and better D2/D3 receptors. By taking some highly bioavailable iron on an empty stomach before bed we are literally sneaking our brains some much needed iron.

I did not make this discovery myself. About 14 years I decided it would be a good idea to start taking melatonin. Before that I didn’t even know that occasional restless feeling had a name. I learned it’s name quick. After two nights of little sleep (and of course not making the connection) I went on the internet and found a site similar to this one. Someone said (just take some iron at night, there’s just something about that free floating iron that seems to help.” Because I have a sensitive stomach I bought “Gentle Iron.” I took one 28mg capsule and slept RLS free. Three months later I ran out and the health food store was closed. I went to the drug store and bought ferrous sulfate figuring I would rather be constipated than sleepless. I took one pill and an hour later went smugly off to bed. The RLS was still there. I waited about a half hour and took another and eventually fell asleep, but I have never run out of the ferrous bisglycinate since. When I doubled the melatonin the iron no longer worked, so I doubled that dose. At some point I thought this is crazy and went back on the internet where I learned from this site that melatonin makes RLS worse. The day I stopped the melatonin my RLS went silent and I stopped the iron.

lanie136 profile image
lanie136 in reply to DesertOasis

No did not have co morbid condition when younger other than poor circulation as a child. Figured from what I have read I needed more iron in my brain but tried iron supplements and constipation was more than I could stand. I can't take melatonin, it makes me worse. I will try the Gentle Iron. Thank you. I hope it works

DesertOasis profile image
DesertOasis in reply to lanie136

I guess the iron at night trick did nothing for you?

DesertOasis profile image
DesertOasis in reply to lanie136

For more happy customers of the iron at night trick, please see the third reply to this post:

healthunlocked.com/rlsuk/po...

I would suggest you look through people's posts on this forum....plenty of information for you to read....

in reply to

I have read every single post on this entire website, not just RLS, for the past two year period of time. Ask me a question.

nightdancer profile image
nightdancer

It is a treasure of information if one reads the posts here. Much knowledge to be learned from other RLSer's and other avenues to explore.

Yep, everything I posted today is because of things your members posted. Do you think the results of my research based on everyone's experience with RLS has any merit? I'm still working on the member's question with testosterone injections. Testosterone injections lower hepcidin. So he should not be suffering with RLS if my research is relevant to RLS. However, RLS is very common among older men with erectile dysfunction (ED) according to articles I read. The articles imply that low testosterone = low dopamine.

nightdancer profile image
nightdancer in reply to

imply would be the operative word in that sentence.

in reply to nightdancer

Sorry, shouldn't have used the word imply. Blood tests show positively that men with below normal testosterone levels also have below normal levels of dopamine. The real question is whether the low levels of dopamine in men with ED is the direct cause of their RLS. XO

DesertOasis profile image
DesertOasis in reply to

I’m one of the Hiddens in this post, arguing with Nightdancer. What a wealth of disinformation there. Wonder how many people were harmed by that disinformation. Anyways, time to possibly set my own record straight on hormones. They’re great, when they come from Mother Nature and possibly even when they don’t come from her, as long as you don’t have RLS. link.springer.com/article/1....

sciencedirect.com/science/a...

As you can see from the articles, estrogen is what keeps our dopamine receptors big and shiny. Big, shiny receptors pump out more dopamine. I’m not sure how hormones do this exactly, but at some point I’m guessing there’s a blockade or antagonism of those receptors. You antagonize a receptor and it will grow bigger and stronger. So HRT is probably a great way to up-regulate our receptors, as might be melatonin. It’s just too darn painful in the process. If there’s a short acting, natural substance that can be taken during the day that might be one solution for us all.

ALSO, this is likely the reason that RLS worsens around menopause, and even in men as they age, because they have less testosterone. In both cases, there’s much less of those great D2 receptor building hormones 😕

ncbi.nlm.nih.gov/pmc/articl...

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