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Hi, my name is Oakley76!

Oakley76Oakley76 Member Posts: 2 Listener
Hello everyone, I've suffered with fibromiagia for 3 years now, my spine has fused itself which creates pain just to stand up, and walking is beyond painful, I've also been diagnosed with very rare glaucoma called angle closure glaucoma, after surgery I'm still seeing spotted shading in my vision, I'm waiting for a emergency mri scan of the brain to find out if I now have Ms, I keep going numb on the left side of my body, sleeping is an absolute nightmare, waking up every morning with a hangover headache without the drinking, no pain medications work, looking for advice and support 

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited March 2020
    Hello @Oakley76   Pleased to meet you .

    Thank you for joining and sharing.

    Sorry to hear this you come to the right place for support, advice and information.

    Please have a look at the following links may be useful for you.
    Fibromyalgia

    https://www.fmauk.org

    Also for your condition mentioned glaucoma.

    https://www.glaucoma-association.com

    Has support groups all over the country and relevant information, guidance advice.

    Please have a look.  I know with this virus might some difficulties have just been on checking lots of information.

    Please if I can help with anything please ask, happy to be helping.

    Please take care and safe.

    @thespiceman


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  • chiariedschiarieds Community Co-Production Group Posts: 8,124 Disability Gamechanger
    Hi @Oakley76 - Welcome to this supportive community. Thank you for joining, & sharing about yourself. There are others here with fibromyalgia; it's a difficult thing to find effective medication. Sometimes we just have to find whatever ways help us cope with chronic pain.
    I have the hypermobile type of Ehlers-Danlos Syndrome, & the pain associated with that is said to be most similar to fibromyalgia. The things I use are gentle exercise, diaphragmatic breathing & relaxation; mindfulness, visualisations & distraction. Here's some similar information & links on the NHS website. See: https://www.nhs.uk/live-well/healthy-body/ways-to-manage-chronic-pain/
    As a physio I used to teach diaphragmatic breathing, which I still use to help me relax, or get to sleep. See: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf
    I hope some of this may be useful, but please say if we can help support you further. :)


  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,955

    Scope community team

    Welcome @Oakley76. :smile:
    Have they given you a timeframe for the MRI?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • Oakley76Oakley76 Member Posts: 2 Listener
    Hi Adrian, when I last spoke with my neurologist she was ordering a emergency brain scan and for me to go back and see her within a 8 week time line, that was 4 weeks ago, but because of this out break all appointments and future appointments have been cancelled, my symptoms are getting worse but I appreciate the situation the NHS are in, I hope i find you well and thank you for asking x
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