Suggestions for what to do when your best friend of 40 yrs tells you that your RLS is "all in your head" besides killing him!! :)

I am seriously TICKED off. Let's call my friend Gus. Went to college with him 40 ys ago and we are best friends, and I fly to California every year to see him and his family. He knows that my basic "job" is moderating support groups for RLS, and have been doing it on yahoo and elsewhere for 14 yrs. This moring, after I had had a crappy night, he had the absolute nerve to say "it's all in your head!" That is the LAST phrase I EVER wnat to here come out od anyone's mouth, least of all his!!!!! Like I say, he is really lucky to still breathing and able to take his son out trick or treating tonight. :) Not really smiling!

So, how does that make you feel when someone really close to you al of a suden comes up with that kind of crap? Not too good. I did not expect that at all. :(

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  • I agree this is the worst thing that can be said to you, because you feel a hint of an accusation there. That is why it is so important to have someone to talk to,you do not have to explain. I would let him keep breathing, but I have done this, ask him if he has been without sleep for so and so long. Tell him how this affects you. The thing is he wants to show sympathy but does not know how.

    This thing it is all in the mind refers to how you treat your RLS be kind to it and think how lucky you are to keep your legs. Though often I wish I could screw them off.

    I find looking for something I can be thankful for gives me a more positive attitude if not humorous outlook helps a lot not least to deal with the people that think really you are making it all up to draw attention to yourself.

    I hope you understand my meaning, I know that my English is not too good .

    Kollagunn

  • I do understand. Just very stressful when your best friend is being such a jerk, and no he does not wnat to show sympathy, but that is a long story. :) Thak you for your kind words. My feelings were really hurt, and he caught me by surprise, after 40 yrs of friendship. He also thinks the support groups I run are ridiculous (4,000 people). I told him my shrink says it is good for my self esteem to help other people. I am dealing with very narrow minded people here. Going home Sat, and it cannot be soon enough. :)

  • Good one!!!! :) I will use that one! I had raging RLS, did not fall asleep until 6:30 this morning, and a lot of that was stress, of course. Waaaay out of ,my comfort zone here, and it was never that way before. AND, his wife had mild RLS when she was pregnant, and she says "all I had to do was walk for 5 mins and it was over". Well, that is nice for her, but they are also very anti meds and do not get anything about panic attacks and agoraphobia either. It is amazing I can even make these trips at all. That is a victory in and of itself. :) Extra xanax helps.

  • yes, it hurts bad. I do not have too many close friends. I know a lot of peopel, but only a few "soulmates". make that one less. He is trying to be really nice today. His wife told him he screwed up badly. too LATE.

  • Shame he had to have his wife tell him he spoke out of order, which i am amazed she did...

    Hope you have a safe and RLS journey home today... sending hugs...x :)

  • Oooops, that should be a safe and RLS free journey home.....LOL..

  • when this happens to me I direct them to a RLS web site or print something out about RLS for them to read and try to understand. Most people do not know anyone else wth our condition so they are sceptical about it. I try to explain to them but we must look a bit funny squirming about when we have an attack !

  • Usually that is what I do, These people who are supposed to be my friends are very self involved and they would not believe anything I showed them. That would lead to a really bad fight. If I hear one more time "You create your own reality, so you must WANT to have RLS, someone is going to get hurt, and it wn;t be my hurt feelings, trust me.

  • If someone like your feind wants an idea of what we are going through I suggest they run the point of a knitting needle or fork or something like that along the bottom of their foot. (Just like the doctor does when testing your reflexes).. Then explain RLS is like that sensation but re-occuring every twenty or thirty seconds. Hopefully that might give them some insight as to what we are coping with.

  • Another excellent idea. :)

  • Hello nightdancer,

    I would guess Gus is frustrated at not being able to fully appreciate your suffering, is only able to see from the outside looking in when the only way to understand it is from the inside looking out so to speak. So his frustration results in a kind of knee jerk type of ill considered comment that is just crap.

    By the way have you tried Pramipexole (Mirapex, Mirapexin), works for me although my primary condition is Parkinsons disease and this drug is prescribed for that. When taken for RLS only, its is prescribed at a lower dose.

  • I have tried EVERY med on the list. Mirapex almost killed me from side effects, and nothing works for me except opiates, another point of contention. My friend and his wife do "not take meds". He will be having knee surgery in a few days. We will see what heppens with that, but I will back home on the east coast by then, so he will not tell me if he is taking pain meds post op or not anyway.

  • Try asking his wife under guise of sympathising after his sugery lol. If she thinks he screwed up and told him so she might just mention that he is having to take someithing. I don't care how 'hardy' he is he will not be able to go through that without meds of some kind. Then you have him by the short and curlys. Frustrated or not he should not in any way be taking it out on you. There is no excuse for a friend of that length of time doing so. Thats what punchbags were invented for and your not one.

  • Hi, nightdancer, i am really surprised by what Gus said to you. If i was you i would feel like killing him too.. He has known you too many years to know its "not in your head" what a dumb think for him to say.

    I have never ever up til now had anyone tell me its all in my head. My family have never nor any of my friends. I hope that continues otherwise i would be in the killing mood too.

  • :) Will email you later today. I put my foot down, and Trish will have to work in the hosue with me in it today, because I am not going ANYWHERE after not falling asleep until 6:30 am, and got us at 8:30. I was shocked, to say the least and you know the situation. :)

  • Hi nightdancer, I get this from some of my family as well as friends it's very annoying and frustrating as they think its all in my mind!!

    Even showing them the web page on RLS it's like showing them air!! The only people that understand it in my life was my mum and and now my husband the rest even my sisters think it for attention !! I gave up with everyone a few years ago !

    I don't think people will Eva understand RLS until they actually get it !! X

  • Thanks everyone. I have NEVER wished RLS on anyone, but I am wishing it on Gus and his wife (20 yrs younger, and a 3 yr old kid to boot) The kid runs the house, which is ridiculous a big source of stress. Gus is the same age as me, 56, and he will be 71 when the kid graduates high school. I sense lots of frustration here, and it was going on way before I ot here, and I think he is taking it out on me. Mr Athlete has to have knee surgery, too, and he has gained 30 lbs from lack of exercise (doctor's orders) so, he is mad, and he cannot take it out his wfe, so good old me is getting it for this week. may I just say that some peple should not have kids? :) He is 3 yrs and 4 months, and runs this house. biting my tongue hard, since I am leaving on SAT. Phew! Got the flight schedules mostly straightned out after the hurricane and blizzards on the east cast. You can fly to naywher now, except new York City and new jersey, which is a total disaster. Gas explosions when the flood waters came in burned 100 houses down in one town, Breezy Point, NY. It is awful, and again I am being told I am watching too much news!!! Good Grief! Thanks for letting me vent! You all are great!! :)

  • Sometimes hun, as the years go by, situations in life changes. People, who you think you know so well, are not as you thought they were. Sorry you are having a hard time with them this time. The 3 year old running the house, must be maddening. One little boy who will grow up not knowning when some one says no, they mean no.

    Good to get it all out. Not long now, and you will be back home.... :)

  • YUP, and thanks! :) Just got checked in on line to gte my seating assignment for tomorrow. You check in early online flying on Southwest Airlines. Then you get on the plane first ( I got into the FIRST group!!!) so, I can pick any seat I want, will get an aisle seat, hand the flight attendant my RLS brochure and card, like I always do, and I tell them if I am up, it is for a GOOD reason. :) So, get out of my way. LOL

  • I hate to say this, but in a way, your pal is right! Don't scream!! If it's a neurological condition, it IS in your head, so to speak!! I'd still poke him in the eye if I was you, no-one who hasn't experienced this awful thing can begin to understand how debilitating and horrendous it is.

  • ihave RLSlegs andits not all in your head there is no cure for it my docs gave metablets to try to

    seltle them and i been told it run sin the family i drink tonic water

    small bottle a day

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