My Opinion and Experience: RLS is Not a Movement Disorder

By what I consider to be a generous definition, RLS now is generally accepted to be a "movement disorder." I say generous, because this definition includes both involuntary and voluntary movements. In the case of RLS, I do not believe that it is appropriate to include the latter.

In my opinion, RLS is the antithesis of a movement disorder. It is not an illness that causes involuntary movement of the limbs nor is it an illness that creates discomfort due to the movement of the limbs. In much the same way as a person's hand might flinch from a hot stove, I move my legs to gain relief from the discomfort/pain that I otherwise experience in the absence of movement. Yet who would suggest that the flinching of a hand following its contact with a hot stove is a movement disorder?

Indeed, I might suggest that the flinching of one's hand from a hot stove is more of a movement disorder than is RLS owing to the instinctive and hence involuntary nature of the former movement. In the case of RLS, however, compelling the need to move, ultimately, it is my decision whether or not to do so. My legs do not move on their own.

Be well.

[Madlegs1]

Involuntary Is the key word.

In the vast majority of sufferers the urge to move is overwhelmingly involuntary.

[Hidden in reply to Madlegs1]

Hi, Madlegs1, and thank you for your comment. There are a bunch of related syndromes, some of which are variations on a theme, including "periodic leg movement disorder." I had thought that PLD embraced the involuntary movements commonly associated with RLS.

As I do not suffer from PLD and my RLS movements were voluntary, my opinion was based on a narrower experience. Insofar as I am aware, my father also suffered from the "voluntary" movement species of RLS.

[Hidden]

I agree. And for those of us have it in their arms and those who have in their torso it is definitely not a movement disorder. To me it seems much like a perception disorder. Maybe something like phantom limb disorder.

[Hidden in reply to Hidden]

Hi, Fancyrat, and thank you for your reply. I was surprised that you mentioned "phantom limb disorder" as I had first heard that term about fifty years ago and hardly, if ever, heard that term since. Yet oddly, the term had been running around in my head just this past week.

Yes, it may be a "phantom limb disorder" or some other non-movement-related disorder entirely. But a "movement disorder"? Hardly in my opinion.

The current diagnostic algorithm suggests that RLS may be diagnosed based upon "an overwhelming urge to move." Why not "an overwhelming urge to take a hot bath"? Or perhaps "an overwhelming urge to massage one's legs"? Or maybe "an overwhelming urge to use a TENS"? To me this is silly and demonstrably so based simply on your own comment.

But to carry my original analogy of the hot pot on the stove farther, can you imagine the following diagnostic criteria in the case of other diseases or matter in need of medical attention: In the case of an emergency room visit due to a deep razor slash: "an overwhelming urge to obtain sutures"? Or in the case of tuberculosis whose victim is knowledgeable about modern medicine "an overwhelming craving for antibiotics"? And in the case of a person suffering from Poison Ivy "an overwhelming urge to rub Calamine Lotion on their exposed extremities."

If a movement disorder, why is RLS sometimes relieved by elevating the legs? Perhaps the disease is circulatory as first suggested to me by one internist decades ago? And if a movement disorder, why is RLS sometimes relieved following a hot bath? Suggestions of "counter-stimulation" notwithstanding, perhaps the disease is muscular-skeletal as first suggested to me by one orthopedic surgeon at about the same time? This would explain the temporary relief routinely attained by me by "stretching" my legs.

As time goes bye, I am more and more inclined to think that the non-neurological diagnoses were the correct ones. Be well.

[LoisTonya in reply to Hidden]

I though it was a neurological disorder

[Hidden in reply to LoisTonya]

Good morning, LoisTonya. Yes, I suspect that the consensus here and in the medical community is that RLS is a neurological "movement disorder." However, I disagree.

If pain is the standard by which a disorder is termed "neurological," then every broken bone, sore muscle, abscessed tooth, etc. also would be. So, in my opinion, the RLS "pain" that I experience does not automatically make it a neurological disorder.

From my experience--and based upon a physical examination performed about 30 years ago by a respected MD with specialization in internal medicine, the RLS then was diagnosed as a "circulatory" issue; i.e., insufficient blood flow. Though ultimately varicose veins then was ruled out in my case, it is now conceded to be a cause of RLS in many. Consistent with the circulatory hypothesis, my RLS is relieved by elevating my legs and thereby facilitating blood flow in my legs.

Again, from my experience--and this time based on a physical examination about 30 years ago performed by one or more MD's with specialization in orthopedic surgery, the RLS then alternatively was diagnosed as a "muscular-skeletal" issue. This diagnosis was corroborated by the observed limited range of movement in my ankle joints and tenseness of my calf muscles during episodes of RLS, and the fact that the range of movement was enlarged and the pain lessened following stretching of my legs. Massaging my legs and taking a hot bath offers similar relief.

For the foregoing and other reasons, including the fact that when I walk to relieve RLS my gait otherwise appears to be essentially "normal," I am hard pressed to categorize RLS as a neurological "movement disorder." To be sure, this is my opinion.

Be well.

[LoisTonya in reply to Hidden]

I have no pain at all, just a need to move my legs. Elevating my legs doesn’t help, nor massaging them. Clearly my symptoms are not quite like yours. Only getting up and walking helps.

[Hidden in reply to LoisTonya]

Hi, again, LoisTonya. Yes, there appear to be at least several variations on the RLS theme and related disorders/diseases. Some perceive the discomfort as "tingling," some perceive as "itching," some as "creepy, crawly, worms inside legs."

In my case, it is not mere discomfort as in creepy, crawly worms inside legs, but also includes actual burning pain. It is the burning pain that, in my case at least, supposedly tipped the scale in favor of "nerve pain," hence neurologic rather than circulatory or skeletal. But again, I do not believe that pain itself is the defining characteristic, only a symptom of a circulatory or muscular-skeletal disorder.

Be well.

[LoisTonya in reply to Hidden]

Hi RSLI. conoclast,

just goes to show how different it is for each of us. Lois

[Eryl]

I'm in total agreement with you on this in the vast majority of cases. It is not caused by some phantom signals otherwite some people wouldn't get relief from sight stockings, vibration pads and the like which create sensations which temprarily distract from the sensations causing the RLS.

I believe that RLS is caused by what's causing the sensation that is transmitted to the brain and in most cases that's inflammation of the nerves causing them to be hypersensitive and send out signals even ehen there is no stimulation like touch or heat. This inflammation most commonly comes from the food which people are eating, things like refined carbs and refined seed oils. Refined carbs include sugar, strachy foods like white flour and fruit juices. Refined seed oils include cooking oils and margarine. In fact I initially thought than the E202 preservative in margarine was the cause of my RLS until I found that the refined seed oil was the primary cause (I still have not felt the urge to test whether E202 could be a cause).

Again not a problem of false transmission of signals but correct transmission of spurios signals.

[Hidden in reply to Eryl]

Hi, Eryl, and thank you for your reply.

You may be on to something. As I am not a nutritionist, I have to defer to you on the food angle. In my case, unfortunately, I have many food allergies so that my diet is somewhat limited to a select few foods that likely would not pass muster on your list. Such is life.

Be well.

[Eryl in reply to Hidden]

May I suggest that you search the internet for 'foods that cause inflammation', also that gluten can be a cause of many intoletances as it causes the gut to become leaky so that you absorb things quickly, in one big hit that can sometimes overwhelm the body, the leaky gut caused by gluten (or more specifically one of its metabolites 'glaiadin') is one reason that white bread has a higher GI than pure sugar.

[Hidden in reply to Eryl]

Thanks, again, Eryl for your reply. Another coincidence: "leaky." At last's week with my new GP, I was informed that I may have something "leaky.." Unfortunately, it was not my gut but my heart valve. Oh, well. Yeah, my whole life I have had a very sensitive digestive system. In time, I've just given up. Time permitting, I will revisit in light of your suggestion. Be well..

[Tanker1]

If you have periodic limb movement disorder (both awake and sleep) which is highly correlated with RLS (and has the same underlying cause) you would find that your legs do move involuntarily. Twitch, jerk twitch which is just endless torture.

[ahome4u in reply to Tanker1]

I have periodic limb movement while awake. When the legs are going wild and I try to relax, my body will jerk. The only way I can describe it is that it is like a belly laugh without the laugh, a hickup without the hickup, or a cough without the cough. The upper body will just jerk violently in ways it's not suppose to move.

[Hidden in reply to Tanker1]

Hi, Tanker 1, and thanks for your reply. I have no experience with Periodic Limb Movement Disorder and will concede that it reasonably may be categorized as a movement disorder.

My experience only was with respect to my affliction: Restless Leg Syndrome which, however, excruciating it may be, eventuates in a conscious and wholly voluntary course of action to seek relief: movement; hot bath; massage; leg elevation; etc. It was with this experience that I commented on what I perceived to be erroneous inclusion of RLS movements due to what I believed to be my voluntary action.

If memory serves, I learned in high school biology that different nervous systems (autonomic v. central) controlled voluntary v. involuntary movements. Be well.

[ratfancy]

Along the lines of this thread, how about an uncontrollable urge to laugh? What makes this all so confounding is that the "worm" can move around, now legs, now arms but not legs, etc. Sorta like an urge to contort. I suppose some psychiatric manifestations, such as the urge to scream, bring about relief while or after the screaming. I'm going out on a limb here (pun intended), or shall I say better "grasping at straws." I usually say to people who don't understand it's like being Gulliver, tied down and unable to move. Damn those Lilliputians! Or having 50 mosquito bites and your hands are tied. Have you ever gone to a movie theater and had an episode? Trying to avoid writhing is a ridiculous endeavor. I wonder in the past how many people actually went mad with this disease and were locked away forever.

[Hidden in reply to ratfancy]

Hi, Ratfancy, and thanks for your reply. You've noted various issues so I'll share my thoughts on some: Oddly, I never seem to have had trouble watching "movies" in the theater for all the years that I used to go. Guess I was too enthralled. Last went about 25 years ago, though. But yes, while I was under the curse of pramipexole, the discomfort/pain got so great that I could not even sit comfortably at home watching evening TV nor would I be able to relieve my symptoms by "surfin'" the Internet.

Since having been off pramipexole, I still have discomfort/pain, but am able to watch TV and surf to my heart's content. This leads me to an entirely different topic that maybe we can explore elsewhere: Why isn't pramipexole and its fellow travellers treated as a "Schedule 1" controlled substance? It is as addictive as any (addictive? perhaps I should have said "leads to dependency") and the withdrawal is worse than Heroin.

Maybe we should be discrete in mentioning other disorders (uncontrollable urge to laugh; Turette Syndrome; etc.). Otherwise, a "sleep expert" neurologist might further enlarge the category of "movement disorders" to include spontaneous laughter or profanity.

Gulliver is a great example. I liked the movie (saw it circa 1960 if I recall). Be well.

[Grandmawithwonkylegs in reply to ratfancy]

Hi ratfancy

I'm so glad someone actually can understand my version of what has been labelled RLS but is more likely PLMD. It can be any time of the day although is more common in the evenings. My legs physically bounce off the ground. I have ants crawling inside them. My arms occasionally join the party and I look like a body popper from the eighties. Add to all this the urge (and completion) to scream into my pillow and then it eases with use of the extra dose of pramipexole I administer. Gp's do not understand and I recently got sent to a "sleep expert specialising in rls" who completed the sleep study and blood panels, the sleep study revealed apnoea (more likely to be when I bounce off the bed and have to itch a calf muscle or toe) and the blood panel showed my iron levels to be at 78 which he said was great (compared to the 42 last year) but when I mentioned the mayo clinic algorithm he said he had never seen it!! So I don't put much faith in anything HE told me. I cannot go to the cinema and sit through a film, I always book seats next to the aisle and usually end up fidgeting on the steps of said aisle so I just don't go anymore. This sucks big time and I just wish it would do one. The only thing that relieves it is the pramipexole which I know is a DA but I'm not feeling any other choices right now, I mean let's face it why mess with something if it works!

[SueJohnson in reply to Grandmawithwonkylegs]

But it doesn't seem to work if you can't go to the cinema and sit through a film. And since it is affecting your arms and in the daytime it sounds like you may be augmenting. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Does this sound like what you are experiencing?

[Hidden]

The term movement disorders refers to a group of nervous system (neurological) conditions that CAUSE either increased movements or reduced or slow movements. These movements may be voluntary or involuntary. (From the mayoclinic.org)

I can't see RLS as being excluded from this definition.

[Hidden in reply to Hidden]

Good morning, Amrbo. Thank you for your reply. Yes, I am aware that the definition includes both voluntary and involuntary movements; in the case of RLS, I disagree with its inclusion.

Be well.

[Greenleaf360]

My doc proposes RLS is all 3, movement, sleep and neurological. In a response to a question about kidney diasese and RLS my doc responded that sleep medicine doctors are best able to manage RLS. My doc is a psycologist (psychiatrist?) specoalizing in RLS. He is currently studying the severe insomnia assocoated with methadone therapy. May account for his opinion about RLS and sleep medicine.

[Hidden in reply to Greenleaf360]

Hi, again, Greeleaf360, and thank you for your reply. Respectfully, I've "been there, done that" with supposed "sleep experts." I've been treated/examined by some of the best of the lot and, in hindsight, am not impressed. Apologies as I mean no disrespect. But these experts now miraculously find "sleep apnea" and recommend treatment for same in much the same way as their predecessors recommended the pre-emptive removal of tonsils from all children and, when the supply of tonsils had been exhausted, recommended the pre-emptive removal of every available appendix, whether diseased or not. Only when they suggested that gall bladders also be removed pre-emptively, did the practice cease.

My current physician is a general practitioner. Though she is neither a "sleep expert" nor a "neurologist," she is knowledgeable of the current algorithm for diagnosing and treating RLS. I resisted her recommendation to see yet another "sleep expert" neurologist, but grudgingly agreed to do so. My appointment with the sleep expert will be about two months hence; meanwhile, I will continue to be treated for RLS on an interim basis by my GP.

Be well.

[spencertroy222]

Well. It is not involuntary but it is. I have move my arms and legs. There it is. My arms and legs are not moving when I am not being attacked by rls yes. It is obviously a nerve stimulus affecting my brain. 900mg of Gabapentin in one dose sorts my rls out 99% of the time and always 20-40 mins to do so. Thing is Gabapentin absolutely destroys my short term memory. I now take pramiprexole which seems to work to.

[SueJohnson in reply to spencertroy222]

So you have stopped the gabapentin?

[spencertroy222 in reply to SueJohnson]

Yes.

[Hidden in reply to spencertroy222]

Good evening spencertroy222 and thank you for your reply. I concur that the distinction between voluntary and involuntary sometimes may be blurred in the case of RLS and its related disorders. Yes, sometimes, the urge for me to move is almost mandatory ...but I am conscious of my decision to move if and almost invariably when I do so.

Just now, I found myself in excruciating discomfort (I continue to reduce tramadol intake and skipped this afternoon's 25 mg tablet). As weary as I was, I took a small walk in my building. Relief! At the risk of boasting, at the end of my walk, my gait was almost indistinguishable from that of a "normal" person without either RLS or PLMD.

So I ask, what kind of "movement disorder" eventuates in "normal movement" when a person moves? From my perspective, movement disorders ought to be characterized as such based on whether or not a person may move "normally" and not whether or not they suffer great discomfort and pain in the absence of movement. My opinion anyway.

Be well.

[spencertroy222 in reply to Hidden]

I live on tramadol. I crushed my spine in1989 and since then I have had multiple herniations from the Cs to Ts to Ls. I have DDD in the Ls. I found tramadol does NOT stop rls or prevent rls. The tramadol does the joint pain. sciencedirect.com/science/a...

[Hidden in reply to spencertroy222]

Hi, spencertry222 and thanks. I am sorry that you have suffered so much. Though I have other medical issues, they are minor in comparison to the RLS. I only take tramadol for RLS, and have done so, at virtually the same dose, since around 1998. Except during DAWS, it worked consistently and without apparent side-effects.

In the US, after using for 20+ years without negative incident, however, I no longer can get any more w/o signing a Pain Management Plan. Not sure if the same requirement exists where you are. On principle, I simply refused to sign same. Therefore, I'm screwed!

Today is first day in 20+ years that I've titrated down to 1 x 25 mg tramadol twice daily (v. 2 x 50 mg twice daily). Am now experiencing not only RLS discomfort but flu symptoms (runny nose; sneezing; aches) which are to be expected in tramadol titration. At least, I now know how to distinguish those side effects that may be due to tramadol detox rather than to addition of pregabalin.

Oh, thanks for link on gabapentin/pregabalin. I have taken both, but currently only on pregabalin (50 mg per day). I will read link shortly. Be well.

[Hidden]

I've had bad pain in my legs for many years and moving them seemed to be the only relief I got, I now use a tens unit and have it going for several hours before I go to bed and it has helped enormously, there is another thing for involuntary movement of legs and it is not restless leg syndrome,

[SueJohnson in reply to Hidden]

Have you tried any medicines for your RLS?

[SueJohnson in reply to Hidden]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you haven't, when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.

[Hidden in reply to SueJohnson]

thank you for your response, I will talk to my doctor on the next visit, any advice is good , take care

[Hidden in reply to Hidden]

Hi, Annie1995. Please excuse me if I respond with one comment to the two that you just posted. Thanks for your reply and suggestion re: TENS.

In my "Introduction and Preface" I mentioned (briefly) various of the medicines and non-medicine supposed remedies that I tried. I omitted many, including TENS. Admittedly, the TENS device was not per an Rx and was one of the less expensive versions (I tried to see if it would be worth a greater investment). It appeared to me to be perfect in theory, but ineffective in practice. To be sure, the failure may have been attributable in substantial part to the poor design and manufacture. I may revisit.

Incidentally, in addition to acupuncture which likewise was ineffective--even at the hands of a trained master who also was an MD Internal Medicine--I have from time to time thought about giving TENS another go. I was thinking of exploring biofeedback.

Meanwhile, I have found some temporary relief in some non-Rx approaches, including: rolling the soles of my feet across the round, steel crossbar of a set of dumbbells, contorting myself in various positions that charitably speaking may be regarded as "yoga-like," and even elevating my calves over the arm of a large love-seat (I find that the pressure of the firm arm under the calves draped over them does afford considerable relief). And so it goes.

Be well.

[Hidden in reply to Hidden]

thank you for replying it's never simple take care x

[Hidden]

please try a tens if you haven't , but use it for a long time on quite high but not so it's very painful , what have you got to loose apart from a few pounds I tried everything

[Hidden]

I do hope you can get some relief, I use to lay on settee with legs up and in bed I would use lots of pillows, if you try tens do keep it on for hours as I do, take care x

[Hidden in reply to Hidden]

Hi, again, Annie. Thanks for your reply. I've experimented with various positions and different pillows and "angles of elevation" (as I'm sure many of us have). Of the various that I've tried, the most beneficial appears to be lying on my back on love-seat with legs raised at ~45 degree angle atop arm of love-seat.

While in bed, I now employ a device favored by my ex-wife many decades ago--albeit in a context not related to RLS--which coincidentally enough, I have read mention of on some sites in the context of RLS relief: the use of a large pillow placed between both legs while lying on my sides so that the two legs are separated and parallel. Oddly, the "crotch pillow" does seem better than nothing.

Be well.

[Hidden]

interesting,I will try that, thank you , i also use elastic socks as the pressure kind of helps, take care x