Patients Ankylosing spondylitis
What is your ankylosing spondylitis story? Let's share!
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How are you today?
I thought I would open this discussion so that we can get to know one another better!
So, what is your ankylosing spondylitis story? When and how were you diagnosed? Did you receive your diagnosis right away or did it take multiple doctors to diagnose your AS? What treatments have you tried and how are you doing today? Do you have any advice to share with someone newly diagnoses with AS?
@CynthiaC @sASha! @1976apache @Coling @Missy2 @eileengreen @Joduell @saxon49 @SuziBloor @DebiJP @Catblonde @Jenpat @Shelldurrant @Kelgirl76 @Dollydymchurch @Becky5343 @Suzief @Abuosman @trefor @mads8384 @hung.7
Feel free to share your story with us here!
@Courtney_J Hello Courtney, I've recently diagnosed so I'm new to ankylosing spondylitis, but I'm a regular to chronic pain. I have had sacroilitis (inflamed sacroiliac joint + low back/leg pain) for years and I started noticing the pain and stiffness starting to creep up my back. I have an allergy or intolerance for NSAIDs and I can't take anti-TNFs because of a heart condition I also has, so right now my rheumatologist has now put me on Xeljanz. It seems to be helping for now.
@CynthiaC Ouch that sacroilitis sounds painful!
I was diagnosed probably 15 years ago now and it was probably one of the hardest things I've had to accept in my life. I was an avid cricketer and dabbled in tennis and golf with my wife, so to know that I'd have to give it all up was difficult. I'd been having paralysing pains in my spin and pelvis and after an MRI it was pretty clear. I take Enbrel among other things and I try to stay active as much as I can manage. It's been hard through lockdown and the virus madness, but trying to keep a smile.
I've had this many years as well. I've managed it well, but I think since lockdown it's gotten unbearable. I'm worried I'm going to have to give up my job. Even working from home is difficult. I've been on just naproxen for a while but I think I may need to change to something a bit stronger.
My late fiance who I was his main carer had As. He was diagnosed at 28 years of age and passed away on the 26th July 2019. It was a heart attack that took him. He was on morphine patches diclomax and also had tried 3 or four of the newer drugs. The ones that are put in through the drip. But to be honest I'm glad he didn't have to cope through this pandemic.
It's hard to watch someone you love coping with pain everyday. He also lost a lot of weight. There was times when he was very ill for weeks at a time.
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@Cmad66 Oh no I'm so sorry to hear about your fiance. AS is such a painful disease, how awful for him to be taken so young. I'm sure he was well more than well cared for by you. Take care of yourself as well!
Ankyloo Thankyou very much. I have to look after myself now as I have fibromyalgia
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How are you today? Have you seen this older discussion?
I'd like to invite some new members to share their ankylosing spondylitis story:
@Rebecca1985 @Chelsea1234 @Nettyfitz @TerriSH @Florin29 @JenniferKing83 @fiala56 @Glenn1275GT @Cokecan222 @Littlebo @krystalrosen @CaryHutton @madzik993 @Wafaa.elhoucini @Basher @WhiteWolf @BakuBunny @Jason1 @thedavid @liamjcross @CynthiaC @sASha! @1976apache @Coling @Missy2 @danjoshaw60 @eileengreen @Joduell @Moke772162
Don’t hesitate to share your questions/thoughts/advice with us here!
Somya from the Carenity team
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