I am 38M with AS diagnosis for the last 10 years. I am extremely thankful that most of the time I am in remission and take no meds for the disease, though I'll get flare ups of arthritis, lasting anywhere from a day to a few months at a time, sometimes with iritis too. I also have mild UC, asthma, Raynauds but again mostly in remission. I get my ESR, CRP, etc. checked twice annually and it usually looks fine, and I have very little sign of bone growth on my spine.

I do wonder though if I have underlying disease activity that isn't marked by any arthritis or inflammation, but that comes out in other ways mentally.

Periodically throughout the year I have days where I wake up with mild arthritis and feeling extremely exhausted and anxious. There is no obvious reason for feeling exhausted. I haven't exercised or worked excessively. But no amount of coffee can fix me. I work in executive leadership and whereas most days I feel very confident, get a lot done, love interacting with people - on these days I am none of those things, I am just crippled with exhaustion and panic attacks.

This happens often from October-March probably linked to seasonal affective disorder we have in Canada, but it also happens even during our beautifully warm and sunny summers. Almost like bipolar as the experience is so different on a good day vs. a bad day. While I am so grateful to be highly functional most of the time, it is so nerve wracking to have these unpredictable days throughout each month where I feel like death has warmed over me, but with no significant physical pain to speak of, just a bit enough that I know it's there.

I think traditionally it was assumed that AS sufferers would have a certain amount of mental illness from the constant pain and debilitation in their lives. But increasingly I am reading studies that the link is due to gut health, vitamin D and inflammation, rather than a direct cause of psychological stress from arthritis pain. ,

NSD didn't do anything for me and I tried quite religiously for a year. Having really really strong amounts of coffee seems to help somewhat.

I'm wondering - anyone have a similar experience to what I am describing? And what do you do to solve it?

Last edited by Didier; 03/29/19 05:27 PM.