help and support to others

hi all, ive had RLS for 44 years now, and counting, when i was first diagnosed with it, i decided to have a look for support on the internet, and ive found it, On the first site i got in touch with, RLS FOUNDATION, and i met some lovely helpfull people there, Irene, and Donna,to name just two, then i became a member of the british group, RLS/UK, and then this forum, and i have to say, its been a pleasure to meet and try to help some fellow sufferers, and to recieve a lot of help and support back. Most of us come here and check the posts daily to see how you all are, and to ask for advice from one another, but WHY, do some people try to take us for idoits, trying to push products at us, and then get nasty with us if we dont agree with their sales pitch, it gets me so angry, ive been on lots of sites for RLS, and there is allways the same sales pitch, oils, socks, creams, health products," natural cures", fine if you want to try them good luck i hope it works for you, good luck, but why do we have to get insulted if we say they dont work for us, are we not entittled to speak!!, do we not have the right to comment on what works for us, lets just try to support one another, as we should, thats the purpose of this forum

jean

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  • Well put Jean, I was also under the impression that this site was for those who had RLS and wanted too help others. Sales pitches are not what I would concidder helping and I don't think this is the place for such statements. I'm lucky so far as I don't take any drugs for RLS but those that do want proper help and support, I assume.

  • Hi Jean firstly thank you for all your help over the years. I,ve tried all the natural products over time and nothing helps my RLS although good luck to those that do get some relief. I,ve been on Requip for many years and for me its a miracle although I do get augmentation with it. But I have learned to cut my tabs down when that occurs and can now manage them. Personally I dont know what I,d do without our support groups and people like you and Irene who will listen and always give good advice. Thanks girls xx

  • Hi Jean. I've had RLS for 50 years and have only just found a forum to speak to other people who have it. I wouldn't take any meds or use creams etc and agree that people trying to sell these things would be an annoyance. Perhaps if they were just totally ignored in a thread they'd get the message? I know from my own personal experience that nothing works, and you have to find your own individual coping mechanisms. I was once offered anti-depressants - which I'm sure would work - but I don't want the rest of what they do to you. This is something I was born with and is not caused by a lack of vitamins or being diabetic etc. I want to overcome this, when it's a problem, naturally, and this is why I want to speak to and learn from other people on here.

  • If someone has success w/ anything that might help me or any other RLSer, I would like to hear about it.

    I would also like to hear from others who have tried that remedy to see what they thought, good or bad. "Share, inform and support."

    What is important is that RLSers have a forum with which to discuss their personnal experiences w/RLS and remedies.. By conversing w/ the deseased, us, some form of treatment may be found to help.

    In the short time I have been on this forum, I have found fellow RLSers w/ the same severety as mine but treatment varies all over the board. I can't imagine where I would be if I had some of your doctors and the lack of knowledge they seem to have of RLS and treatments.

    What works depends on the severity of your RLS. If you have RLS in the early stage such as the "tingling sensation" maybe a bar of soap or a blend of herbs may do it for you. If it's the severe RLS such as electric shock feelings, something more powerful is needed. Harvard put out a level of pain index for RLS where doctors have different medications to prescribe based on that level.

    I would recommend this to your doctor if you feel he could use a little education.

    It was my Doctor who educated me on this.

  • hi rlser, well we both are, are'nt we, my doctor is really up on rls, and treatments, we both learn from each other, he says im the only one at my practice with rls, and that im his "guinea pig" i can discuss anything with him, and he lets me try whatever i want, so its not a problem with my doctor, that i was talking about, i dont like it when some people dont help and support , and i dont like sales pitchs on support groups, im not saying there are any on here, i am merely voiceing my feeling, One thing i have learnt, is that what works for one person, doesnt allways work for the next, so if anyone ask a question, i dont answer it, i tend to say what my experience of it is, that way, i think we cant find out how different we all are, with meds and other treatment, or coping ways that we develope, i wouldnt say anyone is "wrong" if they dont agree with me, and neither would i say they were right, i would say we are different, thats all, I have primary rls, that runs in families, and its the very painfull type, and ive had it for 44 years...and counting, but the best thing ive found out, is to listen to others and try to help each other, thats why we are here, i wish you well with you treatments

    jean

  • If "restless legs" were not for my first search on the internet on my first computer, I may not still be here, literally. I had no idea what it was, and my doctor had no clue, but I was going crazy. that was in 1997. Now I moderate support groups all over. If

    not for the support and the knowledge that we DO have company out there and are not alone is huge. I have made some lifelong friends, traveled to meet people, etc, and gone to a couple of RLS conferences, and am an awareness advocate. Any chance I get I will tell someone about RLS, or mention it to see a reaction. There is still so much more work to do, after reading some of the posts here and in my groups and other boards plus Facebook, I never cease to be amazed and annoyed at the same time when I hear the "bad" doctor stories. I am lucky. I have a strong support system at home. 6 members of my family have RLS that live close. But, I rely on the online support system that we are making stronger and stronger each day. We are all on the same side here. :o) Jean and Irene, you help me to stay sane, although that is a debatable issue. lol

  • with you all the way there nightdancer..except if your refering to your sanity :) as i suspect we are all a little crazy at times :)

    jean

  • I am also lucky to have a doctor who might not know everything about RLS, but, he knows i am always doing research and i belong to several support groups, so he "allows" me to medicate myself with whatever med i am using from him. He knows i have a very low tolerance to all the meds. So far, he hasnt refused me any of the medications when i have ask him if i can try them.

    As nightdancer has said, there is still lots of work to do getting our voice across to the doctors and the media. You would think ALL doctors would know and undertand what RLS is and how to treat it by now, but i think some are as baffled as what to do for this condition as what we are trying to find that ever elusive relief.

    Oh thanks nightdancer, Jean and myself are the "jokers" of the pack. Although, i must admit we can send some people nuts.....lol...

  • ooo the nerve of the woman !!! :) :) ;)

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