What is your ankylosing spondylitis story? Let's share!

@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. 

@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 

Hello everyone, 

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 @zippot @saxon49 @SuziBloor @Jenpat @Catblonde @Suzief @tracy1966 @Kaypop828 @Shelldurrant @Kelgirl76 @Dollydymchurch @Becky5343 @Abuosman @67Nikkijane67 @trefor @Mgsandrewgoodwin @mads8384 @hung.7 @JasonWhyte @Ryanaddis83 @Windows1987 @Avourneen @Jennymh @ahighplace @Walgreens @Mazza191 @Mandy43 @Thistlelass

 Don’t hesitate to share your questions/thoughts/advice with us here! 

Take care, 

Somya from the Carenity team 🌼

My AS started when I was about 4yrs but I am now 73yrs but when I was 4 everything was put down as growing pains no MRI or CAT scans in those days I had it quite bad until I was about 25 then it started to get worse but I wasn’t disabled with it but when I got to 50s it started getting worse and never stopped I had a MRI scan and it showed severe AS in L1 to L6 plus two fractures in the spine and was told in was inoperable so now im 73 both feet are completely numb going up towards my knees now. I can stand for about five minutes without any aid, but after that my legs go like jelly and my spasms in my back are horrendous and I have to sit down or I would just collapse on the floor in heap.

i’m on horrendous amount of tablets, morphine, pre-gabbling backlofen so many tablets it’s ridiculous and the pain is there all the time and to be honest with you it’s so bad at times that I feel like if I had any more I would take the whole lot , I would be interested to know if anybody else has it as bad as this and how they cope with it and any suggestions they can come up with. Thanks ingy50