Nearly had enough of this RLS

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Hi all I have been suffering night and day with RLS and have tried allsorts so i can try and get a night sleep and now i have turned to drink just to give myself some sleep instead of staying a awake all night.

I recently seen my gp who is trying to help me but now i have 2 problems instead of one problem Drink and Rls.

I have tried to exsplain to the job center how it affects me but they either dont care or dont understand what i am going thru so i just wonder if its  worth it anymore, if it wasnt for my wife and son i would of sorted it out a long time ago but now i feel i have to suffer for the rest of my life with Depression lack of sleep and lack of concerntration and not knowing what the future is going to be.

 

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  • Posted

    ALMOST everything Odon shares is by far the most accurate I have ever read. I say ALMOST , the way Odon says, "nearly" had enough of this RLS. Odon has not had enough or Odon would finally just stop and save her/him/self time and effort.

    Odon, your observations merit great and prolong applause becaue it is obvious to me, almost 80 years old, you have done enormous research and weeded out the unlikely. From your quinine observation-suggested to me 65 years ago by doctors at the University of Chicago who, even then, called my condition RLS, to all you say about dopamine agonists, on and on, most of it is spot on. You have shared what is obviously truly deep, careful, and enormous research into the issue of RLS. You have a better grasp of all of the ramifications than any other person with whom I have had contact in all these years.

    More people suffer from this so-called syndrome than most people realize. It is also a matte of degree. These people who sit and constantly bounce one leg and deny that they have RLS are blind.

    They just have a mild case of it. Or anyone who cannot sit through a film, a play, or a concert without getting up and moving, has it. Children have it. A brilliant first grade teacher who had 4 ADHD kids in class finally constructed one legged stools for those 4. In order to keep their balance they kept swaying about, but they no longer needed to get up and run around the classroom. ADHA-Restlessness is everywhere and getting worse. Food, Cell Phones, disturbed brain chemistry?

    At any rate, Odon, whoever you are, you have reached a level of wisdom rarely seen in today's world no matter where one lives.

    (However, please forget the entire and ridiculously self contradictory Fopmop diet, or whatever the anagram is. You might as well stop eating entirely.)

    The long and short of it is this. Every human being has an entirely different DNA structure and an entirely different body/brain chemistry from every other single human creature on earth, or elsewhere. The two are interdependent. That being said, all these so-called solutions (there are no cures) for RLS are pointless in that each one of us must try various ways to find relief. Magnesium might help Mary, but it will have no effect on Paul. Diet, injections, drugs, meditation, religion, therapy, ropinerole, yoga, dopamine agonists, cannabis - though this is gaining support even "scientifrically"- doesn't matter, each of us must experiment until we find which one or combination helps us the most.

    The value of this forum is that we can take leads from other people, try them, discard them and keep trying. After 70 years of this particular issue of RLS ( which when young was called ADHD, which, incidentally is nothing more than a description of human behaviour and does not offer any solution to the cause of what can be, and often is, a problem not only for the person but also for her/his "entourage" ) and years of research at various medical centers in the USA and abroad, we can only conclude that the cause of RLS and ADHD is based in brain chemistry, and that each brain chemsitry is unique. So we each need to find our own solution, and from my own experience, no solution is permanent, they will all ultimately lead to augmentation at which point it is efficacious to switch therapies. The older one gets the more likely it is that the RLS will become RSS moving from restless leg to restless spine, and why in the hell is everything called a syndrome? Again, these forums give just about every alternative possible. "Ya pays yer penny and ya takes yer choice".

    It is obvious, however, that Odon is highly evolved, her/his observations about repeating life, or the spiritual aspect of being,

    or the fact that he/she recognizes other planes than the so-called "real" one, or that he/she has overcome anxiety attacks, point to the fact that Odon has a depth of understanding of human nature which would profit others to consider.

    In spite of my admiration for this person and his/her outlook, I dare to suggest that you, Odon, might try getting over the obsession with sleeplessness by a couple of considerations and answering the following questions to yourself:

    #1. Who decides how much sleep we each need?

    #2. Do you feel you need more than you get?

    #3. If so, why do you feel this?

    #4. If you lie there sleepless how do you spend the time?

    #5. Have you considered getting up, grabbing a paint brush and canvas and painting anything, realistic or not? Or writing, or composing, or just about anything active rather than lying there thinking about having to get up in a few hours without having slept.

    I'm not talking about watching TV, playing computer games (get away from screens for pete's sake), reading, or working a crossword puzzle. I'm suggesting you leave the bed and try to do something creative. Even making a birthday card, writing a poem, baking a cake without a recipe, doing something creative with your imagination and your hands, anything but lying there and concentrating on your sleeplessness, can and will improve your being. Your sleeplessness will become inconsequential. You might not need to sleep at all.

    You have handled many issues in your life in your own, spiritually, psychologically, and emotionally in an advanced way. You have all the makings of a creative person. In the event that you already do these things, then there is no reason to spend any more time feeling that you have "nearly" had enough of this RLS, unless, of course, this forum continues to validate your research, your experiences, your wisdom, your inherent need to share, and lets you feel a bit less lonely. In that case, or in any other for that matter, carry on.

    In spite of a different body chemistry, different cultures, age, DNA and all the rest of it, just know that you are admired and respected from afar by someone who recognizes and has lived a life (with perhaps the exception of depression since I am almost always eurphoric) not entirely unsimilar to yours. Perhaps others might say to me, "Why, then, haven't you written privately to Odon about all of this instead of taking up all this space on this forum?" To them I respond, "Well, ask yourself, 'Why have you read this far'?"

    As Gibran said, "The ear of life in me cannot hear the voice of life in you, but let us talk that we might not feel lonely."

    So Odon and others, Sweet dreams, if you dare to dream, but "if you don't have a dream, how you gonna have a dream come true?"

    And as T.S. Eliot added, "Til human voices wake us, and we drown."

    • Posted

      Rondre

      Congrats on reaching 80 years old.   I hope to do the same quite soon.   I have to take you to task for being narrow minded and critisising the FODMAP diet when you obviously dont know anything about it.  

      It is quite wrong to say you may as well give up eating.  Absolutely wrong.    I doubt if I would be alive today if not for my diet experiments that took me to the FODMAP diet.  have had so many sleepless nights in a row that I have been too tired to make aa phone call without dropping the phone.   I had to keep working to put food on the table.  

      On a FODMAP diet I can eat many things that are all listed on many web sites.    I keep telling people that its not that bad but you need to be careful.   Like crossing the road.   It can be unhealthy if you dont do it right.   Master the art and it becomes easy.

      Your advice is not based on anyone else's experience.   If you could stand still long enough to paint a picture at 3 am you only have a mild case of RLS.

      If FODMAP helps 30% of RLS victims then its probably done more good that your advice.   So far, in my experience,  it's had a 100% success rate but with a very small sample and unscientific experimental procedure..

      WE all fear growing old and the RLS getting worse.   I hope that something can be done for my children when it gets bad for them.

    • Posted

      Muchas gracias Rondre.  I am not the "nearly had enough" person that began the thread.  Sleep is a healing force to me and an escape.  Like you, since I was young, I had health issues, only mine revolved around the intestines and fatigue, even after sleeping well.  The RLS was mild and fleeting back then.  Sleep provided a reprieve from that discomfort and now, the sometimes loss of that comfort is something I must face, as I did the panic.  As you well know, when the joy of life takes over, or even when sorrow becomes near unbearable, then sleep becomes inconsequential and that's when you do sleep.  But as you also know Rondre, you and I did not come to this place we call earth for an easy ride.  That might be more harrowing to us than all of these other conditions we suffer with.  I know there are so many lessons out there that I planned for this go around but they elude me.  The panic and the sleeplessness are my wake up calls.  I'm trying Rondre, I am a young soul in terms of my visits to earth, I know that because I am displeased with how it is structured yet I am one of the architects.  The evil is so unfathomable and I am constantly telling a friend who is an older soul that there is no way I gave the ok to that.  She just laughs and says of course you did. 

      I will have to think about your quote from T.S. Eliot for a good long time.  We are here to dance the dream, in our sacred human form, no?  I understand that without this human form we would not be able to taste fruit, feel the touch of a loved one or smell a wet forest and that is why souls so willingly come to this plane of existence and accept and even demand pain and suffering.  Almost like bragging rights when we return to the source of creation.  I wish the "forgetting" aka the veil, wasn't so impenetrable.  But there I go again, redesigning.  Til human voices wake us and we drown?  And you, you are always euphoric?  You can only be perpetually euphoric if you know you're just here for the pleaure ride and war wounds. 

      Back to the RLS.  Of all the illnesses that I and others I know have suffered through, RLS has intrigued me the most.  You're right.  The hours I have spent researching it would earn me a PHD.  But I rarely research RLS, what I research is the mechanism behind standing and walking - what happens in the brain and central nervous system when we do this.  What purpose does iron serve in the brain and the body.  And of course countless hours researching the affect various substances have on dopamine.   I did not choose RLS as a cross that I must bear in this lifetime or a test that I must pass, because relief came much too quickly.  I guess it falls into the purpose and meaning category for this particular lifetime.  But I must explain that in terms of "physical" illnesses that I experienced it was one of the most devious.

      It would taunt me like no other.  It was at it's worst when I was taking an antacid, benedryl and melatonin about a decade ago.  Rondre, the RLS was in my neck and cheeks.  I would contort my body into a figure eight with no relief.  But the second I jumped out of bed, it vanished.  How ridiculous is that?  About three nights into the madness I read someone on the internet who said "just take iron at night, even if you're not anemic, there's just something about that free floating iron that works." I couldn't just buy regular iron because of my so-called IBS so I bought one from the health food store.  It worked that night and every night.  One day I ran out and was forced to buy the drug store kind.  It did not work.  I could not figure out why not.  Eventually I did.  But if I did not have IBS then I would have bought the drug store kind and it would have provided no relief and I would have given up on it.  So the IBS was good for something.  Eventually I became annoyed with having to take iron every night and that's when I read about all of the different substances that provoke RLS.  That was my wow moment.  That was when I was sucked into the rabbit hole on a never ending journey of the human body.

      Myra Dutton: "Life is a question, of connection or separation.  What we truly desire is already true, for we are reflections in the Mother's eyes.  She has given us her word."

       

  • Posted

    Here we go again life just gets worse as i have just been diagnosed with Fibromyalgia Syndrome as well now just another syndrome to put up with.
    • Posted

      I have Fibromyalgia also. But like I said, try the yogurt. Also one thing I have been noticing is that everytime I have a cat scan I feel such great peace all over my body. So I finally asked what was in the cat scan that did this to me and she said it was magnetic and I can remember this professional weight lifter telling me that magnets would help rls. He made me a mattress with magnets but I could not sleep on it cause the magnets he had cut out would hurt my skin so I never used it. I wish I could do a study on magnets cause I really think there is our solution to rls.
    • Posted

      Well I also trouble with rsl I use Sifrol but I read about Schweppes Indian tonic water. . I start taking it about 4 days ago I drank 3/4 glass of Tonic just before a sleep, without any pills , I was so happy I slept like a baby and during the day's my legs were so good . The only thing is I don't know if there is any side affects . But I am very happy now for 4 days. If anyone knows more about the tonic water I would be happy to hear ? In the tonic water is Quinine that helps with cramps and RSL hopefully I won't be disappointed about the Tonic water. Regards Salome
    • Posted

      Yes, I am not surprised at all.  Many people get relief.  I believe that quinine is a dopamine agonist and more like a drug than a natural substance.  And like any good dopamine agonist it seems that after a while it stops working and you have to up the dose.  I read about one man that would drink about a litre in the evening.  And you probably want to wait to see if you have RLS before drinking it.  Do you think there could be some other drug you are taking for another condition that could be triggering the RLS or making it worse.  So far I have read that the following drugs makes people's RLS worse:  hormone replacement therapy, statins, beta blockers, diabetes medication, anti-depressants, antihistamines, antacids like Tagamet and Zantac, melatonin AND anti-histamines like Benadry.  And the list gets ever longer every week it seems.  The vast majority of the world can take these drugs and NEVER feel so much as a twinge of RLS.  But those of us who are pre-disposed to RLS cannot touch these drugs.  Once I stopped taking melatonin and Benedryl and Tagamet my RLS basically disappeared.  But while I was taking those drugs and had restless BODY I would take one tablet of iron bis-glycinate on an empty stomach and like your tonic water it would magically disappear.  I tried the regular cheaper iron called ferrous sulfate but it never worked.  You might find that if you switch tonic waters it may not work either.  Anyways, it seems that as I get older the RLS is triggered more easily.  Just one antacid in the evening and I have it.  I could understand if I were taking it every night but one little pill.  And I've made a correlation between over-eating at night and an attack of RLS.  Also the artificial sweetner called Splenda will trigger it for me.

      Anyways, the tonic water is there for you always.  You don't need a prescription.  So now you get to experiment and see if you can get rid of the RLS without taking anything.  Some people find their RLS improvies when they're not constipated.  I've read that consistently undereating will improve people's dopamine receptors.  And we with RLS have really bad dopamine receptors.  That's basically the definition of RLS. 

      Good luck and keep us posted with your progress.  

       

    • Posted

      I know RSL is a bugger hope all things work out well ? In the meantime will keep you updated and I won't be using Sifrol while trying out the tonic water 🙏🏻
  • Posted

    My heart goes out to you. You are right nobody understands or cares. They think it's all in your head. My neurologist tells me it's nerve damage and there is no cure. I have have rls for almost 50 years. It's a long story but I have tried many things. It first started in my legs. I now have it all over my back. I have been on 2 hydrocodone and 2 orpine role every night. That is the only thing that gives me relief. I also take high blood pressure meds . The Ropinerole is the safest things out there that I have been able to take. Been taking both that and the hydrocodone for about ten years now and have had no side affects. I am very sensitive to medications to where I hallucinate even with antibiotics. Just recently I was hospitalized and I started eating yogurt cause I was hungry. I ate a lot of it and when I went home I quit eating it and I realized that or I thought that it helped the rls. I didn't eat it for a week and was back with rls so I started eating it again and my body is so relaxed I've even lost 6 lbs.and has helped constipations. I eat 3 small containers a day. I've never liked yogurt but I buy the Dannon with fruit. Especially the pinacolada flavor is great tasting. Drinking beer helped me also years ago but I did not want to become an alcoholic not to mention the weight gain. I do hope this will help you. Praying for you!
    • Posted

      Hi Cristella, what you have said is most interesting.  I have read that RLS is caused by bad dopamine receptors.  And that the dopamine agonists and opiates only down regulate the receptors even more.  Just the other day I read that "under-eating" or intermittent fasting will "up-regulate" people's dopamine receptors.  So maybe it was your week long fast that greatly improved your RLS?  I have also read people report that their RLS will improve (at least for the day) when their constipation goes away.  Lastly, the heart medications, including statins and digoxin, have been known to trigger or worsen RLS.

       

    • Posted

      I have RLS which is partly  caused by or triggered by my intolerance to lactose.   Of course yoghurt is full of lactose.    Yet for you eating lactose is a good thing.   That's an interesting contrast.   One thing is that it might be interpreted as further evidence that its related to diet.  Some researcher needs to investigate dopamine and diet.
    • Posted

      I have to apologize for my ignorance. I said yogurt helps RLS. I am back to square 1 cause yogurt did not help. It gave me more restless legs. So please except my apologies and I honestly don't have any answers

       

    • Posted

      I have to agree with you and I will look into this.

       

    • Posted

      Hi CVristella

      It might be good news that you have identified one of the products that excite your RLS.   Lactose.  So for a start identify any food that contains lactose and avoid it,   Cheese is allowable only if its aged like vintage chedder or like Brie and Camembert.  You can buy lactose free milk or use almond milk.  You get used to the slightly different tatse.    No butter and be careful of margarine because they put some dairy product in some of it for some reason.   I have seen it said that greek yoghurt is OK but I dont trust the manufacturers because individual processes  might differ and you might be messed up by a bit of lactose in it.  No chocolate at first - its fattening anyway,     If you aree really lucky this might be the only class of carbohydrates (sugars) that you are intolerant to.      Unfortunately there are probably others but see what eff3ect it has to utterly and stricly avoid lactose.   Worth trying for a few weeks.    Of course if you are going to suffer from avoiding lactose I would suggets you go the whole hog and ask your doctor to help you with the full FODMAP diet for 10 weeks or so and see if it helps you.

      Its cheap and helps quite a few people.

  • Posted

    Hi copystuff

    I am interested in magnets because I can't understand how they can possibly work.  I find it confusing that in many cases the same people who want us to use magnets for curing things also complain about the magnetism caused by high voltage power lines and machinery saying it is bad for our health.   We live all the time in the earth's magnetic field and it doesn't seem to help  - not that we have any alternative.

    I would suggest that you be very cautious about paying money for any magnetic devices.   If you want to try you can get lots of flexible magnets off your fridge with advertisements for real estate agents etc and sew them together to try it out.   It would be wonderful if it helped you.   Please let us know.

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