RLS - restricted blood flow and stretched nerve cells.

[Pete-1]

RLS - Is it possible that restricted blood flow and / or bent or stretched nerve cells from being in a seated posture could exacerbate or even be the primary cause of an RLS twnge.

[Tiredparent Restless Leg Syndrome]

I don't think that applies to me as I can get it standing still! I think it has more to do with lack of movement (hence why most RLS sufferers get it in bed at night) but obviously it is more than just that. I find it so hard to see patterns in RLS. Some evenings out have been ruined by RLS when I've spent more time walking up and down the high street rather than in the restaurant! Another day I can have a meal out with not one twinge. very odd.

[jumpinjack in reply to Tiredparent]

I think there is something valid in both these observations. I frequently get the first signs of an attack in my groin and get automatic relief simply by standing up. Are the arteries and veins compressed limiting blood supply. As Tiredparent says though, the symptoms are very common when lying down in a relaxed position. There is no doubt in my mind that this is a cardio-vascular problem. I was on Tamsulosin for three years for an enlarged Prostate gland. Tamsulosin specifically enhances blood flow in the parts that other beers can't reach. Having had my Prostate Gland op. I came off Tamsulosin and within forty eight hours there I was wandering about the local golf course at three in the morning.

I genuinely believe we are being short changed by the medical profession, who having found treatments for RLS, can't be bothered to look for the cure.

[Hidden in reply to jumpinjack]

Its not a matter of not being bothered to find a cure, its funding. We are way down the list of getting funding to help us. As RLS isnt considered life threatening, even tho we feel like it is. There will be research going on, mostly that will be in the USA. Its just we dont hear about it until they have something to report.

[Hidden in reply to Tiredparent]

I can get it even after a good walk/plenty of movement during the day. At the moment it's as soon, literally, I sit down. Last night I was walking around for over two hours, with one leg at it, it stopped and transferred to the other one. Then up half the night with both of them going for it! Magnesium spray used to work, but not now. I also take 250gm magnesium in the morning. Next week or even tonight it could just stop for days... No blooming order to it coming or going!

I agree with Jumpingjack... Come on researchers... RLS is driving us mad! Please come up with something. What worries me.. What happens when I get really old etc and it starts (57 at mo). Heaven help us!

[Hidden in reply to Hidden]

I am 67 and rely on the meds that are available to treat RLS.

[Lindy14]

There's obviously some connection, Pete, but as yet I haven't seen any research illustrating any connection. I'm desperate to get some help, as most of the treatment I've found for myself work temporarily (i.e. for a few months or up to a year), then I've got to find something else. Like LadyBal, I'd love to see some ground made in understanding how to tackle RLS.

[lowtech]

I know that some postures dont help my RLS - especially sitting on sofas- but also after alcohol (even small amounts) which tends to open capillaries, which should improve 'outer' or surface circulation(?). But if RLS is a nerve problem why does alcohol affect it?

Strangely I have never suffered from RLS whilst driving, when it all disappears even though in a sitting low position for hours sometimes! I find a walk before sleeping helps a bit with nighttime RLS.

[Hidden]

RLS is nothing to do with circulation, when we are not moving then the RLS seems to start. Thats why we get called nightwalkers, pacing gives us relief all the time we are moving. Alcohol can be a trigger for some people, but not all. Some foods seem to trigger RLS for some people but not for all. When driving, you are concentrating, that seem to divert the brain from the legs. Distraction is known to help.

[Hidden in reply to Hidden]

Hi Elisse,

I think you are right about it not being circulatory.

RLS, I have read, is seen as a low dopamine condition, which occurs because the cells that manufacture it are no longer available. I have Parkinson's as well as RLS and at least 80% of those cells are dead and gone. The replacement as you and others know is Sinemet(Mirapex & Requip).

In PD, we develop motor problems(balance, gait, tremor)which are all things controlled by the nervous system. Without the dopamine to make that system work we are in big trouble. BTW, there is controversy about what part RLS plays in PD(a side effect or ?).

Like a previous poster, I try to look at other reasons why I have RLS because maybe there is an existing cure or better treatment. I have chronic venous insufficiency and immediately grabbed onto that as an answer, but it's not.

I'm posting a link re the use of a new vibrating device since another poster used one that did not help. In the US(me) we have many OTC devices sold that often don't work. The device here is FDA approved and the company is working hard to get it approved for sale outside the US.

The cost here is about $850, but my neurologist thinks there may or will be retailers who will rent the devices. I can't recall just now whether our Medicare and private insurances will cover this, but I would bet that will happen as the costs for insurances is huge if you consider meds used in a life long illness vs one device with few side effects for most.

myrelaxis.com/

[Hidden]

I agree with Pete that restricted blood flow and/or stretched nerve cells from sitting too long can agravate RLS, at least for some of us. For me it is impossible to sit for very long, no matter where I sit!, although soft seats are worse. Last summer, while on a car trip with friends, my RLS got so bad after 4 hours of sitting, that I almost screamed for them to stop the car at once because I was loosing my mind with all the painful twitching going on! It had to be now, not 10 min from now! So we stopped and I walked while the family went for coffee and yummies! Such is life with RLS.

Sometimes it helps to ly on ones back, knees bent, lifting and stretching with hands around knees, the lower back as much as possible. After that I take an elastic 'band', wynd it around my feet, and lift and stretch my legs as high as possible ( don't bend them ). Sometimes this hurts enough to bring tears to the eyes but I go on with it because it helps afterwards. I believe in stretching legs and back as much as possible. It does help. Of course I have to take medication for RLS ( ropinirole and tramadol ) but sometimes even that is not enough. After sitting for too long, lie on the bed or floor, and lift the knees as high as possible. Let me know if it works for you, anyone!

Rohanna

[Pete-1 in reply to Hidden]

Another factor relating to the idea of restricted blood flow etc.

During the daytime you may be wearing very tight fitting clothing and thereby restrict flow of bodily fluids.

Just something else to confuse things.

[Hidden]

Elisse, you always make the most sense! Thanks for sharing so much with us! I find your comments short and very informative. For me, I write too much to get myself explained!

By the way, I'm Danish but live in Canada, on Vancouver Island.

[Hidden]

Bambrick you write as much as you like to get your explaination across... You are a long way from your native home now.

[Pete-1 in reply to Hidden]

And in any case quite often an idea in your head seems quite simple with no need for a verbose answer but when you do try to explain your idea in words you end up writing no end of wibble in order to make your self understood.

[Hidden]

Elisse knows her stuff ! X

[Hidden]

Thanks p1pp1ns, but i am still learning, lots i dont know still. Meds i have to look up when someone posts and i have not heard of a certain med they state, or they are using a name thats different to one used here in the UK. But thats how i get to know stuff, by researching... You are also valuable to this forum. X

[Pete-1]

Has every one seen the post about vein disease and RLS. It's in HealthUnlocked somewhere. It tells of the national sleep foundation sending 113 RLS people for treatment of varicose veins. 98% of whom reported being clear of RLS once the diseased veins were removed / treated.

[sidvin in reply to Pete-1]

This makes sense; the problem is getting your doctor to refer you and also the waiting time . I am 83+.

One of the doctors at our surgery is going to see if acupuncture helps.

I will report back in a week, although I appreciate I may have to have a few sessions.

[Hidden]

How I wish I would have chimed in on this discussion!!! Rahim and I have been discussing this behind closed doors for the past year. In another HU group Pain = we have been talking about how tensed muscles, yes, you heard that right, tensed muscles can actually squeeze your bones so tight that blood flow gets lessened and the nutrients can't get through nor can the proper oxygen so then nerve death does happen sometimes resulting in neuropathies, or numbness as some prefer to call that. lol. So the big question is - could it also cause RLS? I really like your answer Pete above mine. It's the evidence that I would have produced if someone would have challenged me on it.

[Hidden in reply to Hidden]

Could sitting put an incredible burden on the lower spine (CNS) and cut off the dopamine from reaching the legs/peripheral nervous system? And you're right about the legs. It's one big feedback loop. A signal has to go back the other way. If the legs are short-circuiting then RLS is sure to follow. And that is why massage is go great. It allows the feedback loop to operate more freely.

[Pete-1 in reply to Hidden]

I don't understand this statement by "Hidden"regarding Dopamine supply being cut off etc. because Dopamine only travels the smallest of distances as a neurotransmiter from one nerve cell to another or from one synaptic button across the synoptic cleft to the next neuron. This kind of activity is to get around the inability of the nervous system to conduct electriciity across one neuron to the next, the neurotransmiter does this job instead. Ther's loads of different types, well about 12 I believe.

In the legs when a nerve cell terminates at a muscle there is another one (Acetylcholine). The muscle cells receiving this signal will then contract or relax the muscle. The transmitting neuron terminates a in a network of neuron synoptic buttons rather than just 1, to make sure that the signal is certain. Other muscle cells will contract or relax in a symphony, in a kind of a wave of relaxing or contracting action as signaled by that network of neuron terminating synapses.

Or something similar - its a long time since learning that stuff at school.

[flower-girl]

When I sit down in the late afternoon/evening, or immediately I go to lie down in bed, I have to get up because my thighs feel they are one solid lump of deep-seated aching...which if I had to describe with a colour it would be a dark muddy red/brown in the shape of a large hock of ham. This pain is only relieved by either moving my legs and stretching them or virtually burning or freezing them. I have tried lying on the floor with my legs up the wall...and this helped for a while...but sadly not for long. I have used very large frozen packs to wrap around my legs and that helped by replacing one pain with a different but preferable pain...the same goes for the heat packs. When I use the stairs I feel as if the muscles in my legs are weary beyond belief... I climb the stairs and drag my legs with me. It would be wonderful to just have them propel me up the stairs without the conscious effort to make them do just that. RLS is not for sissies that's for sure.