Guest guest Posted January 18, 1999 Report Share Posted January 18, 1999 Ninette, I know exactly what you mean. We spent New Year's Eve with some good friends. I had to take my Permax while there and that prompted questions as to why I was taking it. When I said that I had RLS, they had never heard of it and even while explaining it to them, I could tell by the looks on their faces, they really didn't get it. I wondered if they thought I was a neurotic. I know I'm not, but the explanations I gave sounded bizarre to me. Bye for now, Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 1999 Report Share Posted January 18, 1999 Ninette Tell them that you have intermittent loss of function of one or more inhibitory pathways in your spinal cord and/or your brain. This allows excitatory stimuli to take over and give you the strange feelings that only movement relieves. Dr. Levin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 1999 Report Share Posted January 18, 1999 and if this explanation doesn't work and the people you're explaining rls to persist in having no sympathy or making fun of you or not taking you seriously then tell them that anyone who stays near you for more than 5 minutes might catch rls from you. JACK this warm weather is making my brain hurt At 09:28 PM 1/18/99 -0500, you wrote: > > >Ninette > >Tell them that you have intermittent loss of function of one or more >inhibitory pathways in your spinal cord and/or your brain. This allows >excitatory stimuli to take over and give you the strange feelings that >only movement relieves. > >Dr. Levin > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 1999 Report Share Posted January 19, 1999 Ninette: I too have had a very difficult time explaning RLS to my family and friends. My husband and I were renamed " June and Ward Cleaver " because of our seperate beds. My husband still takes it " personally " when I have to sleep in another bed or on the recliner. I try to explain that I have been doing this since I was three, which was way before I met him but I think that unless you have this it is very difficult to understand. I compare to trying to describe an itch. How do you describe, its just there and if you dont itch it the thought will drive you crazy until you do. If we dont move we will go crazy. I have not slept all night in my bed for a long time, for some reason the recliner is better. I dont know if its because I am not disturbing my husband or its the " action " of moving or my legs like to be elevated, who knows. I went to NIH in Bethesda Md for their rls study, I am sure many people on this support group have gone also, but they did the spinal cord stimulation and for people with RLS their spinal reaction at night is five times greater than their spinal reaction during the day. I think I have my numbers right. I am not sure where that theory will lead to but it does validate the spinal cord excitablitiy theory . hope this helps mary > > > e hill, > (or anyone else) have > any answers for me I would greatly appreciate it. > Thanks, > > Nine-------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 1999 Report Share Posted January 19, 1999 , I have had rls my whole life, but my 89 year old mother had hers set off by a recent trama. They are progressing pretty fast from the crawlie to the pain stage and she was saying " now I know what you were talking about all those years, but how do you describe it??? " Even she couldn't really tell me what it felt like.....such a strange thing this rls. Lee Quote Link to comment Share on other sites More sharing options...
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