Hi, my name is Restlessbob! I have restless leg syndrome — Scope | Disability forum
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Hi, my name is Restlessbob! I have restless leg syndrome

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Restlessbob
Restlessbob Community member Posts: 3 Listener
edited November 2021 in Start here and say hello!
Hello everyone I hope to be an active member
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  • Restlessbob
    Restlessbob Community member Posts: 3 Listener
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    My restless leg syndrome started before I was 50, over 25 years ago. I have been on many different medications and have become quite knowledgeable on the topic, right this minute I am jiggling about as on a scale of 1 to 10 they are about 7, I would not be able to sit still or write anything by hand. I have frequent bouts of level 10 this year and when that is going on I get no sleep, and I mean no sleep at all, after 3 nights of that I am exhausted and sleep comes. 
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  • Barukh
    Barukh Community member Posts: 59 Courageous
    edited November 2021
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    Hi and welcome to the Forum. Nice to meet you.
    I am also on the Autism Spectrum and sorry you have restless legs.
    Hope you find new friends and support on here. It is a good and lively Forum.
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    hello @Restlessbob

    Welcome to the community, it's nice to see you join us and I'm sure you'll find the community to be a positive outlet. 

    Thank you for telling us a bit about how your condition impacts you. 

    Feel free to have a look around the community and get involved wherever you'd like. If you have any questions then don't hesitate to ask.
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hello @Restlessbob - welcome to the community, & thank you for joining. Your restless leg syndrome does sound exhausting, & I'm sure you will have become very knowledgeable about it after having it so long, but it's good that you are. I look forward to you becoming active in the community. For a chat, you might just like our virtual 'Coffee lounge' too. :)
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community from me too 

    I had a very mild bout of this so understand your lack of sleep 

    I did have a drastic remedy I wouldn't recommend but it totally went away after having a below knee amputation e
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  • Restlessbob
    Restlessbob Community member Posts: 3 Listener
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    Hello and was interesting that you chose amputation below the knee, I am booked in for amputation above the knees, my legs are donated to science.
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    It wasn't a choice and not a result of restless legs I had infection which caused sepsis 4 times and the bones got infected so had to have the limb amputated 

    But the restless leg disappeared in the remaining leg 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    I'm sorry to hear you are going through this happy to discuss anything around amputation 
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  • grassbasher
    grassbasher Community member Posts: 9 Listener
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    Hi. Just a thought. Have you been tested for Sleep Apnoea?? Restless leg syndrome is often seen in untreated OSA.
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