Diagnosed with Ankylosing Spondylitis (AS)
Hi everyone!
I just wanted to come on and ask everyone for some advice as to how get on with life after being diagnosed with AS. I’ve been diagnosed with AS last august however the doctors did not inform me nor did they help when I had appointments with my GP. I’ve been suffering with pain and low mobility and uveitis for the past year and always wondered why. The AS was left untreated and I’m currently unable to walk and move. I’m asking for advice as to how to keep myself motivated. Thank you!
Update* I have no started my biological treatment and things have been well controlled for somewhat of 3 months now. Until last week I was diagnosed with FND (functional neurological disorder) doctors have said that the AS was masking the FND. So hopefully I receive come treatment soon. I hope that everyone is doing well and managing alright.
Hi,
Glad to hear things are getting better. I have been diagnosed with AS for about 18 years now and think I’ve had uveitis about 15 times. Roughly once a year with a few years off!
What helped me was finding an ophthalmologist who specialises in Inflammatory eye disease. I now have an amazing ophthalmologist- as soon as my eye gets slightly red or scratchy- I call him up get on the drops and barely have any pain or vision impairment. He has been amazing.
,
Having uveitis occur that often is so frustrating.
I'm glad to hear you are in good hands with your current ophthalmologist!
~Doreen (Team Member)
I know your pain I've had it for about 15 years now I couldn't bend past my knees best thing I got was the biological drugs I cam now touch my toes and work. Still have pain but just keep moving and find a hobbie to keep yourself going. As soon as you stop you'll feel worse and get more achs and pains. Hope this helps
not to bad better once I have my injection later will feel good for the month. Hope your having a good one 
I am glad to hear you injection is helping with relief. What day do you usually inject ? Hope it goes well.
Nicky (Team Member)
Hi how are you? i was diagnosed almost 2 years ago after suffering for years... i was put on hulio 40mg weekly for 6 months worked like a dream, until symptoms came back got switched to cosentyx weekly , no effect then amgevita weekly no effect again. i am in constant agony, steroids difene injectons oxynorm solpadol arcoxia vallium the list is endless, any body have any injection that suited them or any advice as talking to people that dont have this disease dont understand the daily struggle ???
I am sorry to hear about your struggles. This disease can be a mean one. I can understand how hard it is to find something that can help. It's all about error and trial. I am currently on my 4th biologics Cosentyx. Have you talked to your doctor maybe he can suggest something else?
I know the struggle is real when you are not feeling well and just want to be able to get some relief to go on with your day. I still get so many days like this.
For the people that have a hard time understanding you, I get that so much. It's hard for lots to understand that don't go through what you do. I can suggest maybe showing them groups of AS to join, videos, articles to read. Hope this helps and sending you hugs and strength.
Nicky (Team Member)
RLynch99 may I suggest aqua therapy? I was also diagnosed last August, but had a good rheumatologist who is has been supportive. He just issued a new PT order for aqua therapy as I did not feel I was getting much from regular PT.
I have to agree with you, I take a water aerobics class for people with arthritis 3 days a week. It really lessens pain for at least a day after. I think PT might be even better.
Thanks for chiming in.
I'm glad to hear water aerobics is making a difference for you.
Be well, Doreen (Team Member)
