Newly Diagnosed with AS, questions on activities?

Posted , 8 users are following.

First, I would like to say this is a fantastic community. I have read through many posts and comments and have seen nothing but compassionate and helpful people. Keep it up everyone!

I just wanted to share that I have recently been diagnosed with AS, it took many months of scans, tests and blood draws to understand what I had going on. My doctor thinks with 90% certainty that its AS which is afflicting me. My AS is different than many of the people on here as mine isn't nearly as debilitating as some of the stories I have read. Perhaps that is just because my AS hasn't progressed to that point and it will eventually get that bad? I am a 29/M and last year around September time I had been experiencing a dull, ache in my thoracic spine region. I chalked it up to being a part-time bartender, but I noticed it wasn't going away with rest. So after many rounds of PT and Chiro, my doctor decided to run some blood tests. First off, I was HLA B27 positive, had slightly elevated CRP levels (6.7) but normal ESR (7.7) I did also have an increased WBC with slightly elevated Lymphocyte counts. Which from my understanding indicates inflammation in the body. Has anyone had similar experiences? Given those blood tests, the doctor wanted to run an MRI on my Thoracic Spine and Sacral Joints, both of which came back from the Radiologist as 'unremarkable'. So it doesn't sound like there has been any fusing, yet.

For now, I have been able to get by just taking Aleve or Tylenol. As I said before, this has not been nearly as debilitating as others on here have experienced. This may be a stupid question, but are there AS sufferers that don't experience the severe parts of AS?

With all of that being said, the main question that brings me here is regarding golf. Golf is without a doubt my most favorite activity to do. If I am not working, I'm golfing. My biggest fear is that AS might put an end to that for me. Just thinking about not being able to play golf makes me incredibly sad. Are there any other AS sufferers out there that continue to golf? I would very much like to hear your stories and how you cope! Thank you again for all of your help everyone!

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  • Posted

    I do not play golf, but see no reason for it not to continue. With AS exercise is encouraged, and you will be keeping your spine mobile with the swings involved. AS improves with activity and worsens with rest.

    Although my experience is move too much, and you will pay the price with increased pain and stiffness or even a flare. I work long 22.5hr shifts as a nurse, on busy days, as the shift advances into the afternoon I start to experience moderate - severe pain in the thoracic region. Takes hours sometimes days for it to subside to an acceptable level. So listen to your body, but enjoy your golfing. With modern meds now, there is hope your AS won't progress to the horrendous pictures online, especially as it seems to have been picked up early. Most people wait 8-10 years for diagnosis. So from Sept 2016 to now is pretty impressive. Good luck, don't let this stop you striving for your dreams 😁

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  • Posted

    Hi pcschult

    Not everyone with the HLA-B27 gene gets AS...also a high ESR indicates inflammation in the body....yours was low..you have to show high levels of ESR, CRP and ANA to be diagnosed with inflammation....as AS progresses it can get extremeley debilitating when the spinal joints start fusing.....but this may not happen to everyone...AS will either be very debilitating or manageable......in its early stages it's hard to tell...so just continue golfing and just take one day at a time...you may not present with debilitating AS....best wishes....

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    • Posted

      Your facts regarding inflammatory markers are incorrect. Only 30-40% of AS patients have it regarding ANA research approx 19% of AS patients show ANA in their blood. Do not let normal bloods put you off seeking an AS diagnosis
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    • Posted

      Hi maureen61742

      I was referring to inflammatory twsts in general not for AS.....I was diagnosed with inflammation by the high levels of ESR, CRP and ANA and was diagnosed with polymyalgua rheumatica....obviously different in relation to AS ....thetefore my flammatory markers tegarding my personal diagnosis was correct.....

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    • Posted

      Sorry in a rush..spellcheck!!..inflammatory tests in general and therefore my inflammatory markers regarding my personal diagnosis was correct
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    • Posted

      This is ridiculous. Why would you tell some poor soul that because his inflammatory markers were near normal, that he probably didn't have AS. This is an AS forum and not a forum generalising about all your other personal medical conditions. Speak facts not ninsrnce

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    • Posted

      maureen61742

      I didn't say pcschult did NOT have AS..I said his inflammatory markers were low and they have to be high to be diagnosed with 'inflammation'....i suggest you read my post again and get your facts right!.....this is a forum for anyone who has joined it to give an opinion... .have a good day...

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  • Posted

    I used to love playing Golf, sadly no more.

    Even if I could make it round 9 or 18 holes the repercussions the following days would make it painfully pointless.

    You may get several replies like mine but be aware that this is a self-selecting cross section of the people with AS. ie unless it was causing problems you would most likely not be here.

    Play whilst you can!

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  • Posted

    Hello, and welcome! I wish you the best with your AS journey! can't say how AS will impact your life, but I'll share my experience...

    First, I want to let you know about my father. He was diagnosed in his 70's after fusing started. He was an extremely rugged hard worker, both at work and outside of work. He ran bars and was a bartender. He worked on his feet for 50 years. He never had much pain, but looking back, he developed the disease in his 20's. He was always active and moving - I'm sure his activity levels kept the AS symptoms down.

    My AS symptoms started at age 7, I used Ibuprofen from ages 19-32 without significant impairment. My disease progressed after 32. (I have additional auto-immune problems which contribute to me being more affected by AS than others.)

    Personally, regular activity and low impact exercise keep my pain down. Also, diet and serious stress reduction help. High impact exercise is the enemy. I've had great benefits with swimming, walking, gentle yoga and a lot of stretching. (I've learned AS specific stretches with PT, also some on NASS Back to Action app.). When standing is painful, a brief walk loosens up the pressure. Good acupuncture has been helpful for pain and fatigue. When I play with my pup outside, it makes everything better!

    I've tried various meds over the years. I've taken NSAIDS daily. Low dose muscle relaxers helped for years (they calmed the many tiny spasms in my back at night and helped me sleep, reducing morning pain and stiffness.). Cymbalta or Effexor XR have successfully blocked pain receptors in the brain. Pain meds can provide a brief reprieve. And I'm now using lidocaine patches on my lower back daily, They're great.

    I've learned so much from others in this forum regarding what works for others. Some can go into full remission with biologics. Methotrexate with NSAIDs can halt progression. Etc, etc

    There are many things to try. And what works for one person doesnt necessarily work for the next. You do not have to master things in one day. My suggestion is taking care to stay active, happy and healthy.

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  • Posted

    Hi pcschult

    My reply was moderated because i gave the name of the supplement provider...i was suggesting that you may want to try magnesium, calcium and boron supplements that will help manage the pain of AS......you take them altogether in one tablet and can get them from a well known online site...best wishes....

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  • Posted

    Hi pcschult

    My reply was moderated because i gave the name of the supplement provider...i was suggesting that you may want to try magnesium, calcium and boron supplements that will help manage the pain of AS......you take them altogether in one tablet and can get them from a well known online site...best wishes....

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  • Posted

    As other posters commented, stay active but stay away from high impact activities.  I am learning from others that your diet can affect the amount of inflammation you have  from an autoimmune disease.  Going on a gluten/lectin free diet has decreased my inflammation.
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