Hi, my name is kerry85! — Scope | Disability forum
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Hi, my name is kerry85!

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kerry85
kerry85 Community member Posts: 4 Listener
in Start here and say hello!
Hello
I’ve never joined a group online before. I’m very new to this but I’m desperate for someone to tell me that my life will not be ruined by this physically emotionally and mentality cruel condition forever, that it will stop. That I will be able to be the Mum I was before this took hold of me. We have 3 children and a husband who hasn’t been able to work since July because of my RLS. Our life’s in bits, recent sleep study found that my legs alone moved 89 times in one hour and I have a severe case of RLS even in my arms. He prescribed gabatine and said he would ring in two weeks to see if he needed to add to or change meds. He never called. I feel so alone. I’m 32 and I don’t want to go on like this for another second let alone years. I’m sorry to moan, I just hope there is somebody out there who understands. Thank you for listening. X
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  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
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    Hi Kerry and welcome

    RLS is a horrible thing, it may take sometime to get under control. You really need to get back to your GP so that your meds can be adjusted

    CR
    Be all you can be, make  every day count. Namaste
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  • kerry85
    kerry85 Community member Posts: 4 Listener
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    Hello 
    thank you for replying. Yes I do need to go back to my gp, I’m just feeling very low and not going out much. My husband has chasing up the sleep clinic consultant and hopefully he will be calling me Friday to change my meds as he diagnosed me and medicated me. 
    Thank you for your help and advice 
    Kerry 
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  • Geoark
    Geoark Community member Posts: 1,464 Disability Gamechanger
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    Hello @kerry85 and welcome to the community.

    You have two options, if you still have the number of the sleep clinic you can ring  them and explain what has happened and you are still struggling to get a good night sleep. If you are not feel confident to do this make an appointment with your GP. They should have had the report from the sleep clinic by now. Your own doctor may be able to up the amount of medication or refer you back to the sleep clinic.

    In general they will start you on a low dosage and build it up slowly so your body adjusts to the medication. The medication may not be effective for you and so they will consider another medication.

    Once the right medication and dosage is found you will find things will get better for both you and your husband. When I found out I joked that my legs couldn't carry me during the day - I have long term sciatica as well - but they try running a marathon at night.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

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  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
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    hi kerry

    we are always here to help and support when we can, even if you just need to rant a bit it can help

    CR
    Be all you can be, make  every day count. Namaste
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  • kerry85
    kerry85 Community member Posts: 4 Listener
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    Hello and Thank you Geoark, 
    my husband has arranged for the sleep clinic consultant to call mr Friday but he’s missed two previous calls so I’m really hoping he calls this time. Yes you are right my GP should have had a copy of the report from consultant as I received mine two weeks ago so I will chase that up. 
    I’m up all night and manage to sleep from7/8 am to 11/12 pm. I’m so drained from this constant pain.
    Oh You poor thing, how do you manage with sleep? Have you have these conditions a long time?
    I have sciatica in my right leg from pregnancy but it’s the restless arms and legs that make me want to take them off and leave them somewhere! 
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  • kerry85
    kerry85 Community member Posts: 4 Listener
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    Thank you CR. You have made me feel better already. 
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  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
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    My best mate has RLS but it is under control thanks to his GP
    dont lose hope it can be controled

    CR
    Be all you can be, make  every day count. Namaste
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  • Geoark
    Geoark Community member Posts: 1,464 Disability Gamechanger
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    Hi @kerry85

    The sciatica I have had from around 2004/5. It responds well to osteopathy when it flares up and exercise and pills usually manages to keep the pain to a managable level. The best advice I was given was to be told I will probably always be in pain, it is how much and how I cope with it mentally. 

    Fortunately I live near the University College of Osteopathy and sessions only cost £25. I have not been for a number of years and some concerns were raised so I had to get the doctors okay for treatment to go ahead and had to go to MCAT before they would give permission. But that has all gone through, so just waiting for the University to confirm they are happy to continue my treatment.

    The RLS I don't know. I have always had issues sleeping, and would wake up at night facing different directions. It got bad enough that I kept falling asleep at work. So went to the doctors and was then sent to the sleep clinic. Things are a lot easier now, though do wake up due to the pain sometimes. Plus I now work condensed hours, 9 1/2 hours Tuesday to Friday and usually ready for bed when I get home.

    I tend to have a very possitive attitude which helps a great deal. Yes I have my down times and have a good **** about life in general, but then just move on. I am lucky in having an understanding boss and a daughter who likes to have a good laugh at my expense when I'm feeling a litte sorry for myself. Usually along the lines:

    Daughter: would you like to go to the shop with me? The fresh air will do you some good.
    Me: Okay
    Daughter: Oh good, my pet snail can keep me company while we wait for you to catch up, and he needs a little exercise.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

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