Ankolosing spyndolitis

fullspring72
fullspring72 Posts: 21 Member
edited November 21 in Health and Weight Loss
I am diagnosed with this disease and I am in the early stages, and the doctor had mentioned how working out can help this not hurt as much when it progresses. Does anyone else with this condition have any tips or ideas, including dietary needs?

Replies

  • kshama2001
    kshama2001 Posts: 28,052 Member
    Here's a recent thread on it: http://community.myfitnesspal.com/en/discussion/647185/anyone-suffer-from-ankylosing-spondylitis#latest

    @FatherOfAlex said he started a group for this but didn't give a link. If you have a hard time finding the group you could email him and ask for the link.
  • Sued0nim
    Sued0nim Posts: 17,456 Member
    I have family experience ..it's an autoimmune condition with flares so no two journeys are the same

    keeping fit will definitely help...progressive weight training would be great

    Get on NSAIDs and decent pain relief when required ...biologicals if prescribed

    There are special sites like kickas.org but be aware it attracts many of those who are most badly affected but still great information and advice
  • Junybgz
    Junybgz Posts: 1 Member
    My dad has this form of arthritis. Was discharged from the navy because of it. He just turned 78. It's a painful, but manageable disease. When it comes to diet... I would just encourage you to have the blood test for celiac. Apparently, the two are often connected and it can lay dormant until a stressful event brings it to the surface, for my dad, it was my brother's death in 2005. Best wishes! AS sucks! But...they've come a long way since 1955!
  • fullspring72
    fullspring72 Posts: 21 Member
    Thank you guys. Yes my uncles have this condition both found it in their Mid 20's and one is affected mainly by the hip and spine, and my other uncle affects his lungs which ultimately screws with his heart as well. I've been going to the doctors since December but we found it in late April in me, and I have the begging of bone deteerating in my hands and feet, and possibly upper back, my lungs have decreased a significant amount, and my heart regularly has pains. I haven't ever been able to breathe, I have the same symptoms as both my uncles and there's way more than what I mentioned here.
  • Sued0nim
    Sued0nim Posts: 17,456 Member
    AS generally starts in the spine and works out ...other arthritic conditions tend to start in extremities ...my family member was diagnosed with AS and pSA

    Have you a definitive final diagnosis? Or is it just cos they found the HLA-B27 antigen marker which i assume you understand is not causative? Have they ruled out other conditions too?
  • Angiefit4life
    Angiefit4life Posts: 210 Member
    edited July 2015
    I was diagnosed with AS last April 2014 after joint swelling and lower back pain. I am HLA-B27 positive, rheumatoid factor negative but also had a CRP level of 126 and a sed rate of 40. MRI doesn't always show changes in the beginning. After being on 80mg of prednisone for 8 months, stuffing my face, lack of working out, I gained 40 pounds.

    I was finally put on a biologic after having fluid removed from my lungs. I couldn't breath and the pain was unbearable. I am also on several NSAID but I can honestly say walking and eating better has helped immensely! I've lost 40 pounds and feel amazing.

    I try to walk everyday, typically 60 mins (3.75) miles. Some days less, if I am hurting more. My doctor also prescribed pain meds but I try to only take them when it's unbearable. (Typically before the next injection is due)


    As someone mention no two journeys are the same. I am sorry to rant but this disease impacted my life, but I am finally at place where I am not going to let it dictate my life anymore!

    I wish you the best!

  • PeachyCarol
    PeachyCarol Posts: 8,029 Member
    I don't have AS, but I do have PsA, am HLA-B27 negative. I'm on a biologic and prescription NSAID, but agree whole-heartedly with amwcnw that moving more has helped the most.

    I also agree that no two journeys are the same! I'm flaring right now and the fatigue and pain are kicking my butt, but I've recently taken up water jogging and it's a great workout with no impact on my joints plus it offers a nice bit of resistance. I also walk and strength train.

    I feel so much better since I started moving more. Your doctor is on the nose. I started with walking just 10 minutes a day at first and worked up bit by bit. You don't have to jump into anything you can't handle all at once. I do urge you to continue to challenge yourself. The feeling of well-being and accomplishment and the benefits to managing your condition continue to accumulate as you progressively add to your routine.

    Good luck!
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