In reply to Tigger:
Hi Tigger, I also have AS. I am 45 now and was diagnosed in my early 30s (but symptomatic since I was 21 or 22). I have only been climbing for the last couple of years but was active in mountain sports (skiing and ski touring) before that, so have a fair bit of experience managing AS in order to stay active.
First off it is great that you have a diagnosis – appreciate it may feel like a bit of a shock at this point but now that you are ‘in the system’ you will have access to a lot more resources, and there is a lot you can do with treatment to improve your symptoms. Likewise IMV it is really good that you have access to biologics already to help limit any further joint damage. Overall you should hopefully start to feel much better soon!
Hints and tips: I can’t recommend physiotherapy strongly enough, which you should hopefully be able to access through your rheumatology team, ideally a physio with some specialist knowledge of AS who can point you to specific and appropriate strengthening exercises and stretches. I do about an hour a day of rehab/small muscle group strengthening/stretching and really notice the difference if I miss it. I actually have way above average hip flexibility from years of consciously stretching out my hips despite the AS being worst in my sacroiliac joints! Other people I know with AS would recommend Pilates for similar reasons. You might also find it helpful to look into (if you haven’t already) sports massage and/or foam rolling to help reduce any knock-on muscle spasms being caused by your joint stiffness.
I think it’s also worth cultivating a good and active relationship with your rheumatology team as they may be able to give you other short term interventions to help manage flares. I had specialist hand physio for a bit when the AS was particularly bad in my finger joints and I’ve found steroid injections and hydrotherapy both help with flares more generally. Many local branches of NASS (National Ankylosing Spondylitis Society) run hydrotherapy sessions for a small fee if you are struggling to access this through the NHS.
Fatigue is trickier to advise on as it seems very specific to the individual and I fear this may be more of a trial-and-error process for you. My fatigue pattern tends to be that I can do two tough days in a row but then need a day of almost total rest to recover. However like angrypirate I would reassure you that it is more than possible to stay active with AS and in contrast to e.g. running, I have found climbing one of the best sports to manage with the condition because it is so low-impact despite being intensive. The biologics should also help with the fatigue once they kick in as it is a side-effect of the inflammatory response.
That’s probably quite enough to start with but if there’s anything else it would be helpful to know, do shout.