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Hi, my name is saggybagpuss6019!

hello i have Aspergers and fibromyalgia i am finding things tough getting so tired of being in pain and not being believed and so tired of not being accepted anyone feeling the same 

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited December 2019
    Hello   @saggybagpuss6019 Pleased to meet you.


    Thank you for joining and sharing.

    Sorry to hear this, I know have lots of members the same.

    I am one of the team of community champions .  We support members.

    Please can I advise the following Organisations offer additional information, advice.

    National Autistic  Society.  For Asperger's.

    Helpline 020 7833 2299

    Fibromyalgia

    https://www.fmauk.org.

    Helpline 0300 999 3333

    For pain, information, advice.

    https://www.awaywithpain.co.uk.

    Please if I can help further.  Please get in touch.

    We offer, compassion empathy sensitivity.

    You not alone.

    Please take care.

    @thespiceman




    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
    Hello @saggybagpuss6019 - Welcome to the community from me too. As my friend thespiceman says, unfortunately there are others here with Aspergers or fibromyalgia, & some with other 'invisible' disorders. That's the problem, people can't 'see' your difficulties, so often don't have much understanding.
    Pain is indeed exhausting, & I wonder if you might see your GP to see if he can better help you to try & get this under control. I also hope the links above will help you. Please talk here any time.
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
    I'm so sorry to hear about how much pain you're in @saggybagpuss6019. Please let us know if there's anything we can do. You're very welcome here. :smile:
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • saggybagpuss6019saggybagpuss6019 Member Posts: 10 Listener
    iv been in pain for 20 yrs and its getting harder as each yr goes by , i have two conditions that cant be seen , Aspergers and fibromyalgia  , stress makes both conditions worse.  Am getting stressed about having to face yet another face to face , meeting new people is so stressful for me , but when u have to face someone who is out to trick u into saying the wrong things it makes it doubly stressful . i only wish there were advocates in my area for support . 
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @saggybagpuss6019

    Welcome to our online community/family 😃

    I’m also one of the Community Champion’s here at Scope😃

    Yes we have got many members including myself who are dealing with Chronic Pain 24/7 on a daily basis😃

    Please please let me know if there’s anything that I can help/support you with???

    @steve51


  • saggybagpuss6019saggybagpuss6019 Member Posts: 10 Listener
    i need a magic wand , i cant cope with pain killers they always cause me other problems and i have so many symptoms i jsut cant cope with anymore , at the moment am trying to find a cbd oil that will work on me not having much luck but i keep trying 

  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
    Hi @saggybagpuss6019 - I have a genetic disorder (Ehlers-Danlos Syndrome) & the pain I get from that has been found to be very similar to fibromyalgia.
    I've been taking CBD for 16 months & have found this one helpful. See: https://www.simply-cbd.co.uk/product/simplycbd-green-10ml-30ml/ It contains CBDa which is particularly good for pain. The company is ethical & provides lab reports. It's also reasonably priced & you often can get it as quickly as the next day. There are 2 sizes of bottles both containing the same strength of CBD.
    Many medications (& even over the counter ones you might buy) must be taken into consideration as to the timing of doses. This is because CBD is broken down by a complex of enzymes in the liver where over 90% of medications are also broken down. Therefore time gaps are needed (4 hours is recommended) between taking CBD & most medications, etc. to ensure you get the benefit of prescribed medications (& not an accidental overdose). Anyone considering taking CBD should discuss this with their prescribing Dr., or a pharmacist.
    You start with 1 drop under your tongue 3 times a day for a week ('tho some can only manage 1 drop twice a day because of when they need to take their meds). The 2nd week you take 2 drops 3 times a day; the third week, 3 drops 3 times a day, & build up adding another drop for following weeks. You need to drink extra water as CBD can dehydrate you initially. As you build your drops up, if you start feeling worse, you drop back to the previous week's dose, & that's probably the correct amount for you.....as everyone's different, some need to take more drops than others.
    You might also try products from: https://littlehempshop.co.uk/ who do hempy drinks (no time gap needed), & CBD E-liquids to vape, again no time gaps needed. They also sell Simply CBD oils, which can save on P&P if you want to try a few things.
    If you have any questions about the above, please do ask me. Hope this helps.




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