Nature of the urge to move and other ramblings

What the urge to move actually feels like is something members often describe in their posts. I don't know whether anyone has attempt to classify them according to the type of sensation - electric currenty, tooth-achey - and by location - buttocks, upper arms, feet - and if the sensations differ according to location. But it seems to me it would be useful. Perhaps it's already been done.

What did strike me after reading flailingman's post on sensory distractions the other day - watching a movie - is that while RLS is clearly somatic it is clearly psychological as well. There appears to be a growing belief nowadays - underpinned experimentally - in a strong link between behaviour and cognition and the physical brain and nervous system.

Then I thought that if this includes the spinal cord, then there may be a system of sympathetic reactions to a changing environment in and around the spinal cord, different pressures for example, tiredness. By sympathetic I mean a cause in one part of the nervous system creating a sensation elsewhere.

I know this from personal experience in a way. I went to a reflexologist last autumn, just to give it a try, and during the sessions pressures on different parts of the foot resulted in RLS urges (the electrical, tooth-achey kind) which stopped when she stopped working on that particular part of the foot. What if RLS is really a back problem? (That's a serious and dopey question at the same time.)

Anyway, just thought I'd throw the idea out.

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  • I agree fully.

    There are sites that do surveys for free. Perhaps , with this sites' permission, you could set up one. You could organise a link from here.

    It would need a lot of thought and construction - but you seem to have grounding there!

    Go for it!

  • d'you know the names of any of these survey sites, Madlegs1?

  • I just Googled that Q and there are loads of them.

    Survey monkey is one that I've seen used and taken part in. Maybe worth a try.

    You will have to consider how you are going to get it out. You may need access to a data base of email addresses. I don't know how easy that is to obtain- especially to focus on rls experiences.

    You could have a chat with Kaarina or Daragh about that.

    Also pm "nightdancer" who apparently has access to a large number of sufferers.

    Good luck.

  • OK, thanks. I'll think about it. Might be an idea to involve medical expertise apart from statisticians.

  • yessss can you put that in english please

  • It sounds like you are not someone who suffers from the disease as your description if toothachey & electrical don't sound accurate to me. Also, I find your opinion of a psychological component insulting.

    Finally, perhaps you should include in your "study",and I do hope you do one to educate yourself, people such as 2 that my neurologist treats who ate parapalegic and still suffer from rls and don't have the luxury of moving their limbs to relieve themselves of this exhausting debilitation.

  • Precisely my point. Adjectives like exhausting and debilitating express a level of suffering - like on a scale from hardly noticeable and tolerable to excruciating and intolerable. It's the sheer variety of what goes into the ragbag of RLS symptoms

    The problem is, of course, the subjective element. Measuring pain is analogous. If you ask people to pick a number from 1 to 10 as a measure of the intensity of the pain they're experiencing, the results may be useful as a guide, but they're not objective in the sense of measuring height or weight. And what counts as a 5 to some may be a 3 or a 7 to others.

    The same applies to words describing the sensation itself. It's like describing in writing the sound of a violin, piano, trumpet etc. Whatever words you use, they'll never really create in your head what the instrument would sound like if you heard it in reality.

    The point about the mind/body dichotomy - the belief that the mind and the body are two separate things and hardly communicate - is increasingly under fire as far as I can see, and has been for at least a hundred years. For instance, it would not have made sense to manufacture anti-depressants if the physical brain was entirely separate from the experiencing mind.

    In a discussion here a while back I mentioned how my symptoms of RLS (which may or may not be RLS from a medical point of view - I don't know because I'm not a doctor and I've never been examined to find out) made it nearly impossible to share my bed - even with the cat. The pain/sensation (tooth-achey or not) would be intolerable. I'd wait as long as possible, then jerk around to relieve the sensations, and then get a bad conscience for disturbing said cat and/or partner. Others mentioned sitting in cramped airline seats. The mere thought is enough to set off the symptoms. That's one reason why I hate travelling.

    And I completely agree with ironbrain's suggestions below. A survey would be enormously useful to map the range, nature, intensity etc. of people's experience of RLS.

  • Oh, if you have it, you'll know it without any reservations. It will make you a walking zombie without medication to relieve the symptoms. It is incapacitating and can drive a grown man to tears. It's not what i eat, it's not "in my head", it's pure insanity.

  • I agree wholeheartedly with you steverhnmn. It has nothing to do with any particular symptom of other conditions. It just starts at a certain time late in the day and is relentless. The only thing that relieves it when it starts is walking around but spending the night like that is so debilitating and you feel like a zombie when morning comes. I know - I had to walk around a lot for 6 months before taking ropinirole. The first doctor I consulted told me it was all in my mind and to take a sedative. Luckily the second doctor had more interest in finding out about it and fortunately prescribed rop. This has been such a boon. Hopefully it will last me for the rest of my life D.V.

    Molly.

  • I guess it helps to vent the frustration of it all. I hope it works for you. Occasionally i miss my med at 5pm and the RLS will come regardless of when i take it late. I have actually fell asleep while standing up once. Caught myself halfway to the floor. Startled the heck out of me. Being so tired, wanting to sleep, but can't, have to walk or stand up and move the legs. I have been on Pramipexole 0.5mg for 5 years, as long as i take it at 5pm I'm ok. Occasionally i have to take one early, i think it has to do with stress and brain chemistry. I started taking Simvastatin and found it amplified the RLS. Stopping the Simvastatin was like a light switch, the RLS was back to being managed. My dr thinks im nuts. At least i found a way to manage it. I now carry the meds on my keychain. Nothing gets in between taking my meds ontime anymore. I have little stashes at work, on my sailboat, etc. Regarding stress, i have been unemployed for 10 weeks, zero stress and i still have RLS. I certainly feel it can amplify the symptoms, but i do not believe it to be the root cause.

  • @annejende- that's not really fair. Stress is a well known trigger for rls- and that is certainly psychological.

    The one certain known about rls is that everyone experiences it differently.

    I would be very interested in a survey on the different experiences of rls.

    Cheers.

  • I hadn't thought of it that way. My short on sleep brain is hyper sensitive to others thinking it's all in my head.

    Agreed stress is a trigger.

    Apologies 🙄

  • The RLS sensations that I get in my legs are different to the RLS sensations I get in my arms. Both of course incorporatethe urge to move but a different feeling. X

  • Annejende I have heard many, many sufferers describe their symptoms as electronic shocks in fact if you find my post describing my RLS you will see that I use that expression amongst others. I can also relate to the toothache as the feelings in my arms are like a deep ,nagging ache

  • Again, my two hours of sleep have made me rather grumpy today. More apologies. 🙄

    Be glad you all didn't have to live with me today.....

  • I don't think you need to apologise - my sister used to say 'it's all in your mind' and it would infuriate me. As if we could easily control it and would choose not to. Take care.

  • I also wonder about a psychological component, that which relates to how the brian works when we think we are resting daydreaming or something of the sort (which in my case is something of a trigger for RLS).

    There was once people looking at "dopaminergic neurons of the A11 system" in that "the A11 dopaminergic system in the hypothalamus ... is the primary source of descending dopaminergic input into the spinal cord".

    I think RLS research would really benefit from a massive worldwide survey. It would need to look at diet, wealth and social status, personal character, latitude and race (people nearer the equator are less likely to get RLS, statistically), amount of exercise and BMI and so on and so on – I could imagine quite a long, far-reaching questionnaire. It might well be possible to link the data it produces back to workings in the brain, how it controls iron, and how iron controls processes, which, of course, is the physiological research that's still needed, and then we'd have an overall clearer picture of the situation.

  • Hi there. My personal experiences of the pain and spasms start in mid to lower back and actually lift my leg up off the bed during a spasm. It goes one side for several hours and then the other. It hurts and by the morning I've felt like I've been to the gym and over did it. Aches the rest of the day.

    My Dr is attributing mine to high calcium in my blood right now which I am addressing at a specialist next week.

    I take klonopin to sleep and it does not give me the horrid side effects as the DA's. But I don't want to take it for long periods due to it's side effects. I'll see what the other Dr wants me to do.

    I'm glad I have found all of you here because I was going crazy not sleeping for weeks at a time.

    I understand so much more about RLS.

  • Mine feels like worms are crawling inside my leg from my foot on up. When it gets to my calf, I have to kick my leg. I wouldn't say it's painful, just plain horrible. I also get in in my hands, up to my wrist. Not really the same feeling; can't describe it but I have to shake my hands.

  • My RLS feels like I have a million ants underneath my skin crawling around. It's a horrible feeling. But then sometimes it feels heavier and the sensations are stronger and last longer (maybe because it's withdrawal from the prami)?

  • I have been told that I should see a shrink to cure it. Perhaps it would help but it costs a lot of money. The FODMAP diet is cheaper and it worked pretty well for me. The Low Chem diet seemed to add a bit extra and worked even better. Many have tried the FODMAP diet - some with instant complete success and others with total disappointment.

    More research is good but it costs a fortune and if it comes up with ten different solutions then how does a drug company make money out of it? They want to invent drugs to control symptoms not cure them or change your diet. We are stuck with research by students and some not for profit organisations.

    I think some of the experienced people on this site are our best hope. My thanks to them.

    Graham

  • Mind and body are ONE There is no seperation. This is a disease that manifests phsical symptoms created in the nervous system. There is a deficiency in your neurology. They just haven't put there finger on it. Alzhiemers, dementia,rls are agreeably in similar catagories but brain function is a tricky science and much more needs to be researched and studied before hard conclusions come about. I just wished they'd hurry up! WAITING

  • Those with an interest in such things could do worse than look up some of the works of Antonio Damasio, a neuroscientist who studies the connection between the physical brain and what some call the "personalized embodiment of mind" (see Wikipedia's article on Damasio).

    I've also read recently that the notion of the division between mind (soul) and body which many attribute to Descartes in modern times seems to have been a misinterpretation of what he actually wrote. I'll have to rummage around and find that quote somewhere.

    Chris

  • Just a little update - I've been too busy to either think, much less do, much about the topic. I went to Johns Hopkins University's RLS department (or subsection under the sleep department), with a view to getting some email addresses so I could get into contact with one of the scientists there, but they don't publish email addresses as far as I could see. I wanted to ask them if any surveys had been done of the type aired above (no point in inventing the wheel twice), but I've had to put that on hold.

    Anyway, I was speaking to my daughter, who's a doctor, about a possible survey, and she said that symptom surveys are pretty hopeless unless a great many people are involved because everybody understands the questions differently. It's all too subjective - a bit like the pain tests that go from 1 to 10.

    What she did say though was that one could ask about the observable consequences, i.e., lack of sleep, onset times, duration, etc. etc.

    But I've got to work (I'm a freelancer and have to work when I've got work to do), so this'll have to wait a bit.

    Chris

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