Is this RLS?

[Frankie321]

Does this sound like it could be early RLS?

I am 56 years old, male, and weigh about 60kg. I do not take any medicines. I was in good health until about seven months ago. Frozen right shoulder (adhesive capsulitis), onset 7 months ago, but getting better now. No more pain, just restricted range of movement.

Three months ago, another symptom started. I know these symptoms will sound very mild to those with serious RLS, but could it be early symptoms, or mild symptoms, or mild secondary RLS? A) When I wake up in the morning immediately it feels like a yawn coming in both my legs and they mildly shake, both legs, but only one time, and only briefly, say 3 to 5 second. But this occurs every morning. It may occur twice in the morning, if I wake at say 2am and again at 4am. B) Often both my arms will also feel the need to both shake at this same time, just after waking. C) In addition, six weeks ago I began to get what feels like “bubbles” in my calf muscles, only while sitting or lying. It is mild, no pain, say 4 or 5 bubbles in sequence then a break that varies between several seconds and several minutes (but not lots of bubbles simultaneously as in champagne). If I move the legs the bubbles stop. D) When going to bed my calf muscles feel “antsy” or slightly hyper, and this sensation can make it hard to fall asleep. Occasionally the antsy will get stronger and cause a brief leg shake.

Here’s an example of last night. I usually fall asleep easily but I wake up several times during the night. Bed at 9:30pm. Hard time falling asleep due to antsy calf muscles, but fell asleep within an hour on my back. Woke and turned onto left side, woke again and it was 12:10am. Fell very quickly asleep til 3am. Woke, felt like a yawn in legs and arm that led to brief shake, then got onto couch to try to sleep some more, “bubbles” started in calf muscles for say 15 minutes, fell asleep until 5:00am, woke and immediately stood up, no shake while moving but still got leg shake a few seconds later while standing still of say 3 to 5 seconds. Then the brief shaking stops and does not occur again. During the day my mind is focused on the daily activities and I have essentially no problems that I notice.

DIAGNOSTIC CRITERIA
Here’s how I would answer the standard diagnostic criteria questions for Restless Legs Syndrome:

“Criterion 1) A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" or "burning" to "Elvis legs". Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.”
Answer 1. Painful or burning, no. Need to move legs, was a yes, with the morning 5 second leg shaking. A sensation of “bubbles” or bubbling in each of my calf muscles, usually during day when sitting. I have read about really serious RLS sensations in the calf muscles and I don’t have those at this time.

“Criterion 2) The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting.”
Answer 2. Yes. Morning one-time leg shake triggered after waking from sleep and feel a need to move. The bubbles occurred only during sitting or lying.

“Criterion 3) The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.”
Answer 3. Yes, moving the legs eliminates the bubbles.

“Criterion 4) The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.”
Answer 4. Yes in that the shake is upon awaking and the calf muscles feel a bit antsy at bedtime.

BTW, I had a serum iron test done. Here are the results. (No iron deficiency.)
Iron 12, normal is 5-30(down from 20, two years ago)
TIBC 67, normal is 45-72 (down from 57)
Trans Sat 10, normal is 20-55 (down from 35)
Ferritin 323, normal is 30-300 (up from 300).

Any advice on whether all this presents a picture of RLS (or something else) is welcomed.

Thanks!

Frankie

[rthom]

Frankie
Glad to see you on, I'm a 45 year old guy. Keep in mind i can only speak of what I've read or experienced, as i'm only another rls/wed sufferer.

OK, I have a question about the calf shakes, is this a physical manifestation or a feeling you are speaking of? I've noticed that there are a very wide variety of differences in what people's symptoms are. Is it possible that you have rls/wed and something else going on?
I find that in my case there are secondary things brought on by the rls/wed. For example i get a lot of muscle cramping--over and over, at night. This is not a normal symptom of the rls/wed. Many have questioned the validity of it but it only happens at night and only when the rls/wed is bad. So from my standing even if it's not rls it's brought on from it.
About the iron, around here according to the dr. the normal iron is up to 500 instead of 300 and mine was 478 or something, this does not mean you don't have rls just that it's not that kind. So you would be right smack in the middle of normal. Also my dr said that it's not affected by what you eat as much as the normal iron.
Wow it's great talking to another guy,
Anything else let us know.
Randy

[rthom]

One other thing my wife also had a frozen shoulder, i thought she was going to loose it! Wow that was harsh. anyway did they give you meds or do surgery on yours?
How is it now?
This may bring on or increase the feelings associated with the rls/wed.
Also as i'm sure you've already read, at times of stress the rls/wed gets worse.

[Frankie321]

>Thanks for your comments Randy.

OK, I have a question about the calf shakes, is this a physical manifestation or a feeling you are speaking of? I've noticed that there are a very wide variety of differences in what people's symptoms are.

>For example, re leg shakes, this morning, at 2:37am I awoke and felt this yawn in my legs and arms that immediately led to brief shakes. Both legs and arms shake all at once, for maybe 3 to 5 seconds. Not painful. After the one shake, it stops However, I went back to sleep and awoke again at 4:30am. The same feeling, like a yawn in the arms and legs occurred, but milder, with milder shakes. So this day it happened twice overall today. Re calf "antsy" or "hyper" at bedtime, that's just a feeling, which does not require movement, though would stop if I get up and move.

Is it possible that you have rls/wed and something else going on?
I find that in my case there are secondary things brought on by the rls/wed. For example i get a lot of muscle cramping--over and over, at night. This is not a normal symptom of the rls/wed. Many have questioned the validity of it but it only happens at night and only when the rls/wed is bad. So from my standing even if it's not rls it's brought on from it.

>Great question as to whether it could be multiple things from some underlying medical condition, or interactions among conditions. I wonder about this.

About the iron, around here according to the dr. the normal iron is up to 500 instead of 300 and mine was 478 or something, this does not mean you don't have rls just that it's not that kind. So you would be right smack in the middle of normal.

>Interesting that there's a dispute about what are normal ferritin levels, with your doctor saying normal is up to 500. So mine at 323 is not necessarily abnormal (especially as compared to yours at 478).

[Frankie321]

One other thing my wife also had a frozen shoulder, i thought she was going to loose it! Wow that was harsh. anyway did they give you meds or do surgery on yours?

>I suppose FS could be said to be much less serious than RLS because FS is self-limiting. That is, FS always goes away on its own, typically at around a year, and never comes back in the same shoulder. There is much controversy over whether any treatment is effective for FS, or it just must be left to run its course. Indeed, physical therapy in the early stages of FS only aggravates it and makes it worse. I took no meds and had no surgery. I viewed it as a matter of mentally coping with the pain, sleep loss, and reduced range of motion. FS is in three stages, Freezing (painful), Frozen, and Thawing. Fortunately once past the freezing stage, the pain reduces dramatically though the loss of range of motion remains until the disease has run its course.

How is it now?

>I am in the Thawing stage, and I have grown used to it and live within the range of motion limitations, so I'd say it's not too bad especially as compared with the serious WED/RLS stories one can see in these forums. That said, FS is a spectrum disease, like RLS, so some people have it much more serious and painful than I did.

This may bring on or increase the feelings associated with the rls/wed.
Also as i'm sure you've already read, at times of stress the rls/wed gets worse.

>I wonder if there is any connection, or common underlying medical condition that may bring about both.

[badnights]

frankie321
I read your description with interest. I hope some other people weigh in here, because it's not obvious to me what's going on. What do your doctor(s) say, or have you seen anyone? The urge to move is a key diagnostic for RLS/WED, and those symptoms not associated with an urge to move cannot, as far as I understand, be ascribed to RLS/WED. It can still be RLS if you get the urge without sensations but not if you get sensations without the urge.

So your morning shakes don't seem to fit the bill. The antsy feeling, the bubbles, AND the yawn feeling all sound like typical RLS descriptors, yet you don't associate them especially with an urge to move. The urge is present in a minor way? for the bubbles in the evenings and sometimes for the yawn in the morning? Not sure if I'm getting that right?

What's going thru my head is that either - as Randy mentioned - you have more than one thing going on (and with RLS/WED, that's very common- many or even most of us have multiple disorders, not just RLS by itslef), OR the standard definitions of RLS are missing something important. When I took gabapentin (an anti-convulsant often prescribed to treat RLS), I had the interesting experience of having the nasty sensations mostly relieved while the urge to move was unaffected; as a consequence, I would kick-kick-kick all night. Now that I am on opioids, when I have not had enough, I have the also-interesting experience of having the urge to move alleviated but the sensations not. So I think - based only on my personal experience - that the two are caused by different mechanisms. And perhaps you're experiencing the sensation-mechanism gone awry but not the sensation mechanism.

Technically, you don't have RLS if you don't have the urge to move. I wonder if we can always identify that urge in ourselves? You say the bubble sensations go away with voluntary movement, and the yawn feeling is terminated by what sounds like an involuntary movement. There's such a tight connection there between movement and sensation, just like in RLS. I think a careful differential diagnosis by a qualified physician is needed. I am not familiar with all the things that can masquerade as RLS (and I'm not a physician). The lack of a strong preference of the symptoms for the evening also counts against it being RLS/WED.

It is possible that you have RLS/WED manifesting as the bubbles and the antsy feelings, neuropathy as the pins and needles, and something else causing the yawns and shakes. But it is wierd ... the yawns sound so RLSy to me, as does the way they wake you up at 4AM; and the way you avoid a shake attack by translating it into the movement of getting out of bed.

I hope you plan on taking this to a physician for diagnosis?

[Frankie321]

I read your description with interest. I hope some other people weigh in here, because it's not obvious to me what's going on. What do your doctor(s) say, or have you seen anyone?

>General practitioner doctor says "possible RLS", ordered a serum iron test, and said come back in a month ("wait and watch").

The urge to move is a key diagnostic for RLS/WED, and those symptoms not associated with an urge to move cannot, as far as I understand, be ascribed to RLS/WED. It can still be RLS if you get the urge without sensations but not if you get sensations without the urge.

>Beth this is a great point and corrects an error in my thinking. I now think that a sensation in the calf muscle that does not include an urge to move, such as the "bubbles" I feel, is inconsistent with RLS, though its elimination with movement is consistent with RLS.

So your morning shakes don't seem to fit the bill. The antsy feeling, the bubbles, AND the yawn feeling all sound like typical RLS descriptors, yet you don't associate them especially with an urge to move. The urge is present in a minor way? for the bubbles in the evenings and sometimes for the yawn in the morning? Not sure if I'm getting that right?

>The morning shake is a need to move but comes on immediately upon waking and the move will happen immediately, within a few seconds of waking (unless I immediately begin to move out of bed, and then it starts immediately after I stand still). Like a yawn, it is very quick happening. The lack of build up of feeling of urge to move may be inconsistent with RLS, as well as it only happens once or twice a day, and happens only on the tail end of a night's sleep, 2 to 5am, which may be contrary to circadian rhythms of RLS that I read about including mornings (e.g., 8-10am) seem to be RLS free. (What is this morning shake then??)

What's going thru my head is that either - as Randy mentioned - you have more than one thing going on (and with RLS/WED, that's very common- many or even most of us have multiple disorders, not just RLS by itslef), OR the standard definitions of RLS are missing something important. When I took gabapentin (an anti-convulsant often prescribed to treat RLS), I had the interesting experience of having the nasty sensations mostly relieved while the urge to move was unaffected; as a consequence, I would kick-kick-kick all night. Now that I am on opioids, when I have not had enough, I have the also-interesting experience of having the urge to move alleviated but the sensations not. So I think - based only on my personal experience - that the two are caused by different mechanisms. And perhaps you're experiencing the sensation-mechanism gone awry but not the sensation mechanism.

>As you note, it's complex! Thanks to you and Randy for the "more than one thing going on" insight! Yes, standard definitions may also be terse, and therefore not cover all permutations, such as urge to move sensation mechanism perhaps being hard to detect in some cases. By the way, my sympathy for your RLS suffering. The more I learn about RLS, the more sympathy I feel for its sufferers.

>Maybe I can give something back to this community with this suggestions. A great book for people with RLS looking for a psychological perspective for dealing with life's hardships is: "The Reality Slap: How to Find Fulfilment When Life Hurts" by Dr Russ Harris. This book is a clear and strong and sophisticated exposition of "acceptance and commitment therapy" that seems to be generating interest among many of the psychologists now. It is sold out of its first print run, and only available via Amazon Kindle Edition at this time.

Technically, you don't have RLS if you don't have the urge to move. I wonder if we can always identify that urge in ourselves? You say the bubble sensations go away with voluntary movement, and the yawn feeling is terminated by what sounds like an involuntary movement. There's such a tight connection there between movement and sensation, just like in RLS. I think a careful differential diagnosis by a qualified physician is needed. I am not familiar with all the things that can masquerade as RLS (and I'm not a physician). The lack of a strong preference of the symptoms for the evening also counts against it being RLS/WED.

>All that you say here is correct, including the possibility that urge to move may sometimes be hard identify (such as in mild cases).

It is possible that you have RLS/WED manifesting as the bubbles and the antsy feelings, neuropathy as the pins and needles, and something else causing the yawns and shakes. But it is wierd ... the yawns sound so RLSy to me, as does the way they wake you up at 4AM; and the way you avoid a shake attack by translating it into the movement of getting out of bed.

I hope you plan on taking this to a physician for diagnosis?

>So it’s still a bit confusing. One symptom perhaps is consistent with RLS, an “antsy” feeling in calf muscles immediately upon getting into bed and prone, with a mild urge to move, that I can fight mentally and deny it movement mostly, though sometimes I cannot stop a brief tremor in my left calf. This one is more sensation and urge to move, but less actual movement. The “bubbles” in calf muscle often when sitting or lying throughout the day, including morning when RLS would be expected to be quiet, does not give an urge to move feeling which would seem inconsistent with RLS, though it does stop with movement. The morning shakes perhaps because of its rarity, only happens once or twice in a day, and perhaps because it is so fast in happening, is less consistent with RLS, though as with a yawn it does feel an urge to move that is relieved by the (one) movement. I am still puzzled as to what this is and if there is an underlying medical condition, but at least I understand better now!

>So it’s still a bit confusing. One symptom perhaps is consistent with RLS, an “antsy” feeling in calf muscles immediately upon getting into bed and prone, with a mild urge to move, that I can fight mentally and deny it movement mostly, though sometimes I cannot stop a brief tremor in my left calf. This one is more sensation and urge to move, but less actual movement. The “bubbles” in calf muscle often when sitting or lying throughout the day, including morning when RLS would be expected to be quiet, does not give an urge to move feeling which would seem inconsistent with RLS, though it does stop with movement. The morning shakes perhaps because of its rarity, only happens once or twice in a day, and perhaps because it is so fast in happening, is less consistent with RLS, though as with a yawn it does feel an urge to move that is relieved by the (one) movement. I am still puzzled as to what this is and if there is an underlying medical condition, but at least I understand better now! I will ask my GP for a referral to a neurologist (though the wait time to see a specialist can be long).

>Beth, thank you for your comment!

[ViewsAskew]

Forgive me, but I can't help but wonder if there's a bit of over-thinking going on... (you spot it, you got it kind of thing, lol and I'm great at over-thinking things...). Not saying it's not complex or that more than one thing might be going on.

This may or may not help. If I think about it, the urge to move is sort of, to me, inherent in the sensation. I have this icky feeling and I can't stand it and I want to move to get rid of it. But, I never think of the urge to move as an independent component. It's just all part of the same. When I had this very mildly, the sensations weren't terribly strong, they never lasted particularly long, and I don't think I would have said that there was an urge to move. I just moved because I wanted the sensation to stop - like pulling away from someone tickling you or scratching an itch. I honestly do not think I would have said that I had an urge to move. In fact, the urge and the sensation were more like one in the same. But, moving always resolved the symptoms.

Now that its a bit worse, before the symptoms start with a vengeance in the evening and are lighter (during the day at my desk, let's say), I often find myself winding/rotating my feet, ankle and calves, stretching my legs, flexing and releasing, etc. It's mostly unconscious - not an urge to move per se - at least not a conscious one. But, when I think about it, it's always because the sensations are either floating in the background or verging on breaking through.

Let me ask this. What happens if you do not move? Does the feeling build or go away on it's own? Can you relax it away? Can you ignore it? And a secondary question - can you relax when these symptoms happen, or does it awaken you, even provoke a bit of anxiety?

Most of us would say that there is no escape without movement. The sensation doesn't stop without movement. And, if we don't move, the afflicted body part will appear to move on its own (unlikely, more likely that our brains just take over and move anyway, but it feels as if you're not in control of it).

Another question, has it ever gotten worse or better after doing something - drinking alcohol or caffeine, exercising, taking cold medicine or an antihistamine, taking an opioid for tooth pain or after surgery, etc.? Those could help us narrow it down.

Oh, and low iron issues are not a requirement. While many of us do have iron issues, there are definitely cases of WED/RLS in those with hemochromatosis. The issue is the iron not getting into the brain, not that it's not available in the body.

I hope you get some answers soon. It's very frustrating to have stuff going on and not know what it is, if it's important, or how to make it stop.

[Frankie321]

Forgive me, but I can't help but wonder if there's a bit of over-thinking going on... (you spot it, you got it kind of thing, lol and I'm great at over-thinking things...). Not saying it's not complex or that more than one thing might be going on.

>Thank you, Ann. Yep, “you spot it, you [maybe] got it”. Some of us have a “high need for cognition”, as the psychologists would say, meaning a need to know and understand (such as what's this symptom that's come on me, possibly RLS, yipes).

This may or may not help. If I think about it, the urge to move is sort of, to me, inherent in the sensation. I have this icky feeling and I can't stand it and I want to move to get rid of it. But, I never think of the urge to move as an independent component. It's just all part of the same. When I had this very mildly, the sensations weren't terribly strong, they never lasted particularly long, and I don't think I would have said that there was an urge to move. I just moved because I wanted the sensation to stop - like pulling away from someone tickling you or scratching an itch. I honestly do not think I would have said that I had an urge to move. In fact, the urge and the sensation were more like one in the same. But, moving always resolved the symptoms.

> I take from this that in early or mild cases, the full symptom set may not have clearly manifested yet.

Now that its a bit worse, before the symptoms start with a vengeance in the evening and are lighter (during the day at my desk, let's say), I often find myself winding/rotating my feet, ankle and calves, stretching my legs, flexing and releasing, etc. It's mostly unconscious - not an urge to move per se - at least not a conscious one. But, when I think about it, it's always because the sensations are either floating in the background or verging on breaking through.

Let me ask this. What happens if you do not move? Does the feeling build or go away on it's own? Can you relax it away? Can you ignore it? And a secondary question - can you relax when these symptoms happen, or does it awaken you, even provoke a bit of anxiety?

> Good questions. At bedtime I can mentally fight the “antsy feeling” with its urge to move and deny it and it just stays there until I drift off to sleep, but I don’t move, but I can’t relax it away. I try not to move because my GP offered the advice: mentally fight it, whose in control of movement, it should be your conscious mind. Fight it because if you do move, you may get temporary relief, but it just comes back, and maybe comes back worse.” Upon awakening it has been unstoppable, except for a brief delay when I immediately roll out of bed but then a brief tremor/shake comes on when stop moving and stand.

Most of us would say that there is no escape without movement. The sensation doesn't stop without movement. And, if we don't move, the afflicted body part will appear to move on its own (unlikely, more likely that our brains just take over and move anyway, but it feels as if you're not in control of it).

Another question, has it ever gotten worse or better after doing something - drinking alcohol or caffeine, exercising, taking cold medicine or an antihistamine, taking an opioid for tooth pain or after surgery, etc.? Those could help us narrow it down.

> Don’t know on this yet. I find it hard to make causal connections when the connection isn’t absolutely immediate (where immediate is touch hot pan, burn finger).

Oh, and low iron issues are not a requirement. While many of us do have iron issues, there are definitely cases of WED/RLS in those with hemochromatosis. The issue is the iron not getting into the brain, not that it's not available in the body.

> Darn complicated thing!

I hope you get some answers soon. It's very frustrating to have stuff going on and not know what it is, if it's important, or how to make it stop.

> Ann, thank you for sharing your comments and experience. I take away that it is complicated, but my current symptoms are not full expression of RLS at this time, but could be if they get more serious and clear, as in must develop an urge to move that leads to movement, and must have it often. So maybe my GP was correct with "come back in a month" ( also known as “wait and watch”), especially for RLS, as there is no early treatment to slow RLS down anyway, though if mine is other conditions then those might be treatable, thus it is worth trying to figure out what’s happening or not happening, while understanding that it may take awhile to get a clear answer. So I'm also reading the comments here with an idea of what to watch out for that might clarify my situation.

>BTW, I read that high ferritin, as in my case, can be a result of inflammation, and RLS and a number of other conditions are linked to inflammation/immune system problems. (See next.) Whoops, am I over-thinking again.

>From dwimble, posted at http://www.rls.org.au/forum/viewtopic.php?t=852

A new scientific study by Leonard B. Weinstock et al. has been published in the January 14, 2012 issue of the Sleep Medicine Reviews Journal titled: "Restless Legs Syndrome - Theoretical roles of inflammatory and immune mechanisms."

Here is an excerpt from the study:

"The fact that 95% of the 38 highly-associated RLS conditions are also associated with inflammatory/ immune changes suggests the possibility that RLS may be mediated or affected through these mechanisms. Inflammation can be responsible for iron deficiency and hypothetically could cause central nervous system iron deficiency-induced RLS. Alternatively, an immune reaction to gastrointestinal bacteria or other antigens may hypothetically cause RLS by a direct immunological attack on the central or peripheral nervous system."

Visit this web page to view the entire study: http://www.rlcure.com/rls_study.pdf

[ViewsAskew]

I don't think we can draw anything from that study....yet. It may come to pass that it's related, but right now there is no causal link.

Seems to me that it sounds like RLS/WED. Even if it's early on, it's still there. I think my point was that, while the medical literature says you have to have an urge to move, the urge may not be as separate as it sounds.

For what it's worth, I don't agree with your doctor. Walking and moving almost always take away the symptoms and often for the rest of the night.

I'd write to Dr Buchfuhrer, an RLS specialist who happens to nicely answer emails, and see if you get a different perspective from him. somno@verizon.net.

[Polar Bear]

I have never ever heard of anyone with RLS/WED who could successfully mentally fight the urge to move.
Many times I have tried and failed to do this, now my failure at something of course does not mean that it isn't possible, but to call it an 'urge to move' is almost to make little of the feeling and compulsion to move.

The compulsion to move is beyond description, beyond dealing with it, beyond being in control of it. There is no control of it, it is like the eruption of a volcano - without containment. It is like pressure building up to the point of exploding, and indeed often I would call it an explosion when I can sit/lie no longer and leap up like a jack-in-the-box, regardless of where I may be. I am talking of in a theatre/restaurant/meetings.

[rthom]

compulsion is a much better word for it.

[Frankie321]

I don't think we can draw anything from that study....yet. It may come to pass that it's related, but right now there is no causal link.

Seems to me that it sounds like RLS/WED. Even if it's early on, it's still there. I think my point was that, while the medical literature says you have to have an urge to move, the urge may not be as separate as it sounds.

For what it's worth, I don't agree with your doctor. Walking and moving almost always take away the symptoms and often for the rest of the night.

I'd write to Dr Buchfuhrer, an RLS specialist who happens to nicely answer emails, and see if you get a different perspective from him. somno@verizon.net.[/quote]

>Ann, yesterday I thought RLS unlikely, and was in a great frame of mind. I felt good during the day. However, as soon as I got sleepy (and feel "heavy body") and laid down to sleep at night, a feeling of intensity or or hyper or "antsy" occurred in both calf muscles without letup for 30 to 60 minutes before I finally fell asleep. This felt like a urge to move, but I didn't absolutely have to move, I resisted moving, and mostly didn't move. Except two times, I think, while laying on my left side, the feeling built up in intensity and culminated in my right leg jerked despite my voluntarily not wanting it to do so. This seems consistent with early RLS. So today I'm back to "probably RLS" (as you say "sounds like RLS") and will write to Dr Buchferer (thanks for that suggestion). Interestingly though, I wake up during the middle of the night and try to go back to sleep again, I don't feel that antsy feeling in my legs and fall back asleep much quicker.

[Frankie321]

I have never ever heard of anyone with RLS/WED who could successfully mentally fight the urge to move.
Many times I have tried and failed to do this, now my failure at something of course does not mean that it isn't possible, but to call it an 'urge to move' is almost to make little of the feeling and compulsion to move.

The compulsion to move is beyond description, beyond dealing with it, beyond being in control of it. There is no control of it, it is like the eruption of a volcano - without containment. It is like pressure building up to the point of exploding, and indeed often I would call it an explosion when I can sit/lie no longer and leap up like a jack-in-the-box, regardless of where I may be. I am talking of in a theatre/restaurant/meetings.

>Yes, last night I felt what you meant, though on a very small scale compared to people with advanced cases. My GP is not knowledgeable enough about RLS, so I need to see a specialist, but I'm sure it will take many weeks to get in to see a good neurologist. I live in Brisbane, Australia, if anyone should happen to know of a doctor knowledgeable about RLS there, please let me know (I realise that's a long shot).

[Polar Bear]

Frankie, you say your GP is not knowledgeable about RLS/WED. Neither is mine.
As it happens, neither was the neurologist that I went to privately and paid £200 for the privilige.

However my GP is willing to learn. We use the RLS Medical Bulletin which is linked in my signature and work out what medications to use. I also have some of Dr B's books, and we refer to portions that I have highlighted for discussion. It is not perfect but together we manage - more or less. There are always ongoing issues, be it poor sleep or symptoms, miracles don't really happen.