Ankylosing Spondylitis

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AnkyieSpon
AnkyieSpon Online Community Member Posts: 138 Empowering
in Neurological impairments and pain
Hi I'm one of the Scope Community Champions, I started volunteering almost a month ago. I chose to volunteer because I want to help others like I've been helped. It's not easy getting the help we need from family and friends sometimes. 

I was diagnosed with AS (Ankylosing Spondylitis) in 2014, Fibromyalgia and early osteoarthritis in 2017.

If you need someone to chat to I'll help as best I can. I know how difficult it is especially when you've just been diagnosed.

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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Great to have you on board @AnkyieSpon :)
  • mandym34
    mandym34 Online Community Member Posts: 2 Listener
    Hi I’ve just been told I have Ankylosing Spondylitis and my sacroiliac joints are abnormal with asymmetric subchondral bone marrow oedema and erosion also there is shiny corners the dorsal and upper lumbar spine some degenerative some likely inflammatory ... was told she forgot the information leaflets but will send them in the post so have no idea what it means, just waiting on new appointment and Physiotherapy appointment, other than that not got a clue any info will be grateful. 
  • AnkyieSpon
    AnkyieSpon Online Community Member Posts: 138 Empowering
    Hi @mandym34d, welcome to the AS club. I hate it when we get told everything in medical talk and they expect us to understand. Degenerative I would take as being wear and tear.  I've just google the terms and sounds like Osteoarthritis maybe as well as AS. If you can't get your consultant to explain this please ask your GP or physio.
    What advice have you been given other than leaflets in the post? Exercise is the most important thing ever and keep as active as possible to help with stiffness and pain. 
    DON'T Google to find out info the only site to look at is National Ankylosing Spondylitis Society they are only UK charity for AS and best support ever https://nass.co.uk/  
    Let me know if you have any particular questions. 
  • mandym34
    mandym34 Online Community Member Posts: 2 Listener
    Hi thanks for the info i had a look on the Ankylosing Spondylitis society website and will have a proper look tomorrow, came across a good few pages so thanks for the info, the only thing I got told was I need Physiotherapy and would probably benefit with occupational therapist to and possibly biological therapy, I have been so tempted to google things but to scared to because most times you stumble upon the worst case scenario, I’ll take anything that’s offered just to help with the pain and would do anything to lie down flat for a full nights sleep lol... they just stumbled upon this after mri to check fir trigamenal neuralgia with major face and neck pain so came as a shock 
  • AnkyieSpon
    AnkyieSpon Online Community Member Posts: 138 Empowering
    With AS it's best not to lay on your back unless you have a pillow under your knees to avoid stiffness in lower back. 
    When you look at website again look at branches page, they have over 90 in the UK run by volunteers with AS. They run physio and if your lucky hydrotherapy sessions. It's also a massive support mentally talking to others is the best way to learn about any illness and nobody will role their eyes thinking what now when you say your in pain. You can also call NASS for advice. I've become a life member, they have helped me loads. 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Welcome to the community @mandym34! Glad to see you've had some support from @AnkyieSpon :)
  • mouse70
    mouse70 Online Community Member Posts: 4 Listener
    Hi I'm new here today I have been diagnosed this year with Ankylosing spondylitis look forward to getting to no people who also have this disease.

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