A lifetime of RLS and a lifetime of shame

That might sound like a really weird title for a post, but I hope when you've read my story you'll understand totally.

I have had RLS since the day I was born, as far as I can tell. There are photos of me, as a baby, with my legs crossed over each other, doing what I found out in later years is referred to as "straining".

Throughout my early childhood years I would be "straining" very frequently. As I grew a little older, my mother would tell me to stop. My father, if he saw me, would smack me and tell me to stop. I didn't understand what was wrong, I was just trying to relieve the sensations going on in the upper part of my legs. I couldn't help myself, my legs were driving me crazy.

As I got a little older I realised I had to hide my behaviour in front of other people, and so I went "underground" and hid my coping mechanism for RLS as I got into trouble every time I used it.

Eventually I found out that, apparently, "straining" is a form of masturbation, which is why my parents had reacted the way they had. Instead of wondering why I was doing what I was doing, and my saying that it was because of my legs driving me mad, the emphasis was on "the wrong thing" and I was punished so much that, even today, I have a real hang-up about talking about it.

I want to know if anyone else out there has ever used straining as a coping mechanism, or knows someone who does this. Probably most people don't even know what the hell it is. All I can say is it does give temporary relief from RLS, and given that I was a baby when I first started to do this, it's obviously natural and innate and nothing to be ashamed of.

Would be really interested to hear from anyone else, or if this sparks curiosity in anyone else. I just cannot be the only person on the planet who has used straining as a natural coping mechanism for RLS, surely.

11 Replies

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  • How very interesting. I don't know what this "straining" actually is but if you look up old RLS comments on t'net you will see reference to masturbation (started, I believe in the New Scientist of all places). Apparently orgasm causes the rapid release of dopamine (or some chemical) that relieves RLS symptoms.

  • Hi Tpebop, thanks for your reply. Yes, I've heard all about the dopamine effect. However, this is not a chemical thing, it's a very, very physical thing. It's like going on a gruelling run, or hitting the tops of your legs to take away the sensation. it's about taking away the feeling at the top of your legs that is driving you crazy, immediately. The times I've wanted to cut my legs off, as many people have said already on this forum, is part of this feeling too.

    The only way I can describe it is that the feelings in my leg are like the need to stretch a muscle, magnified millions of times. And crossing your legs and squeezing them together as hard as you can, so much so that you have to hold our breath to do it (hence I guess the name "straining") so it's bloody hard work which you have to concentrate all your strength on, to the expense of even breathing. And horrible when you're really tired and want to sleep, or in an enclosed environment where you can't do it.

    Not really the normal idea of masturbation (ie relaxing relief for oneself) , but I do know from my own experience there is an element of sexual titillation/excitement or whatever the word is for it all, involved in the build-up of the physical sensations going on in my legs, which fluctuate throughout my menstrual cycle..

    My own hypothesis is that stress, be it from any form in RLS sufferers (type 1), kind of triggers the same basic areas in the brain - perhaps only in the people afflicted with RLS? Could it be that mundane stresses are somehow triggered in our brains along the same pathway as sexual et al stresses, which leads us to have restless legs, which would be naturally relieved by either sex or masturbation, but we can't control because we are not mentally in control of what's going on?

    Must admit my above hypothesis fits my own 50 years of experience, and would be interested to hear from others with RLS who can identify with me.

  • If my RLS comes on and I'm somewhere I can't move around much like a car or a cinema seat then I think I probably do the same as you. For me, the discomfort in the joints or muscles increases over time and goes in waves - very much like the pain building in a contraction during child birth. It increases and then subsides and then attacks again. It is very embarassing when this happens - as people can see me squirming around and fidgeting. Eventually the pain increases until it becomes unbearable and I have to give in and admit defeat. Like others, I've rubbed the muscles until they hurt, hit my legs, enldessley stretched and waved my arms and legs around all in the hope that the pain would go away.

    I've had to leave meetings at unsuitable times and walked around, hoping that a quick trip to the loo will do the trick to get my circulation going and reduce the RLS. Likewise, I've had to ask my husband to stop the car at the next services (which doesn't go down well when we're only 20 mins into a very long car journey!).

    In terms of what makes the RLS worse, yes, sitting for a long time will almost certainly bring it on, especially if the room is warm and the chair is uncomforable but other times, I can sit still for ages with no problem!

    I'm sorry to hear that you were punished for just trying to cope with your symtoms. Very sad, especially as you had it as an innocent baby when you would have been way to young to have sexual feelings. Just shows how dreadful this illness is.

  • Well Well, I am sure I have had RLS from a very early stage and I think if I understand you 'strain' never thought much about it as a singular act!!

    An orgasm is well know for alleviating RLS :)

    Folks as long as its not obscene I feel we should do whatever we need to do?

    Kindest

    Bob

  • Tiredparent and everyone else - you do not need to suffer like this all the time - find a med that works for you and take it regularly - my Neupro patches cover me 24/7 and have changed my life. I supplement them with Ropinorole at night time and now I hardly get any attacks. There is a med for everyone. Good luck to you all, go see your GP and discuss. He will look in his medical book if he doesnt know what you are talking about - hopefully.

  • I do clench my legs hard when the RLS comes on, most times to the degree that I make my legs ache but not sure if this is straining! Can be very exhausting!!

    Interesting post and I feel for you and hope you can escape the feelings of shame that this has brought on x

  • I have suffered from RLS for 27 years. Quite by trial and error I found meds that TOTALLY stopped my RLS. Have been sleeping like a log for the last 11 weeks. I take 2-3 700mg L-argenine first thing in the morning (no prescription needed) and 5mg (1/2 of a 10mg) PAX directly before going to bed. I KNOW Pax is a generic form of Valium. That's why you will need a prescription. According to my GP it is quite safe at the dosage I take and it's been working for 11 weeks without me needing to up the dosage. I AM A TOTALLY DIFFERENT PERSON. PLEASE try it. You can start of with a higher dosage (even up to 5 or 6) of the l-argenine to get a quicker result. It is quite safe. Then try to work down to the lowest dosage that works for you. BUT - do it in co-operation with your GP. Good luck.

  • Thanks everyone. You've all made me feel a lot better. I would still have a problem talking to my mother about the fact I've had RLS all my life as I think she'd switch off as she wouldn't want to know. But, hey ho. It's great to be able to talk to people who understand.

  • It was thought of a "bad thing" to feel any kind of sexual pleasure for

    any woman at one time. They were told that it was their duty to their

    husband..it's been taught that it will bring a man to his knees and

    has been used as a weapon to "punish by withholding" from a man

    trapped in a marriage...sex is/ was a money maker, Now it's toyed

    with and women are told to satisfy themselves, be responsible for

    their own orgasm...NO WONDER why it was thought of with shame

    at one time. I remember people told young men that they would go

    blind from masturbation. Girls were told to never touch "down there"

    so your parents were not quite out of line...

    but times change..you will never shame your kids, I didn't shame mine.

    You can self liberate yourself, a new beginning..and more power to

    it if it helps with RLS. = )

  • mum of sam, I really think I know what you mean! after so many years ..why is it so difficult for me to put my sensations into words..but your description rings true for me. I get this feeling that sort of starts in my feet, then becomes a wave all through my pelvis area front and back . its like a contraction that i cant control. i can fight against it which is painful and difficult and exhausting but usually i have to follow it through and contract everything in that area,,then it passes to start again a few mins later, sounds like what you desrribe as straining. Does that make any sense to anyone?

    It can be slight or really powerful but its always very uncomfortable.Its not a dopamine/orgasm thing (sorry to sound yukky but its the same sensation as trying to stop yourself going to the loo when you are desperate but much stronger)

  • Well, also trying to avoid sounding "yukky", straining is basically crossing one leg over the other and squeezing them together really tight. I found this took away, albeit only while you were doing it, the sensations going on in my legs. That's why it's something that's not obviously masturbation in the sense most people would understand it, and I'm sure there are people out there who do it and are totally unaware that it is. As thedragon says, it's not a dopamine/orgasm thing but just a relief from the unbearable sensations in the legs, no more sexual really than thumping your legs, which can achieve the same thing.

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