AS, Medication and Income Protection

Hi everyone, there's a few question in here so would really appreciate if you can read and respond to any parts that resonate with you.

I haven't really reached out to groups like this before but I feel like I've hit a brick wall and struggling so any help is really appreciated.

I work for a large engineering services company. My role is mostly desk-based with frequent trips to client sites. I'd been in pain for a long time, a number of years to some degree, but I remember the day I woke up in November 2021 and physically I couldn't get dressed. I enjoy my job and I enjoy solving problems but I couldn't do it anymore. I reached my breaking point, physically and emotionally. I called my line manager and completely broke down. He knew I'd been suffering with pain for a while but he didn't know to the full extent, nor did anyone outside my close family circle and GP. Even now I find it difficult to open up about it.

I was initially diagnosed (incorrectly) with costochondritis because of pain & swelling around breast-bone. No treatment or medication really seemed to help and the pain progressively got worse especially in my RHS hip and upper back. Following a protracted period of trial & error investigation I was diagnosed with AS in May 2022 and referred for biologic therapy. Ten months later I'm still waiting but hopeful it will begin soon. Does anyone have experience with Adilimumab or any other biologic?

I'm sure like many of you I was powering through the pain and other symptoms long before diagnosis. Been doing physio for years and tried just about every medication in the doctor's playbook with limited success. Currently taking zomorph, morphine sulphate, pregabalin and Etoricoxib and still finding it really difficult to manage the pain, other symptoms and side-effects. I was recently diagnosed with IBD, asthma and an array of food & environmental allergies and it really feels like my immune system and general health is spiralling. Gastroenterologist suspects IBD is linked to prolonged consumption of medications above. Has anyone gone through something similar and found a medication or treatment that really helped to control pain and regain mobility?

As part of my contract of employment I have a benefit known as Group Income Protection. The benefit is discharged via a well-known Insurance Provider (IP) and provides 60% of income for up to 5 years. The claim was submitted (late) by company in May 2022 just after diagnosis. I had solid clinical evidence including MRI scans, BASDAI scores, appointment notes and written testimonies from rheumatologist, physiotherapist and GP. Following a difficult and long period of investigation by the IP they decided to decline my claim. I appealed and they sanctioned two separate independent medical examinations. Both supported that I'm unable to work or even complete sedentary tasks. The IP then sanctioned a covert surveillance operation and captured me:
• going for a short walk to local shops (took me 90 minutes to walk < 1km incl. time sitting at a bench) and honestly I was absolutely burst after that walk, really paid for it in the days following
• sitting as a passenger in a car for prolonged period of time (<10 minutes)
• with my kids in the park (50 yard walk from car to bench, sat there for a bit and back to car)
The IP declined my claim based on the activities above, stating that I misrepresented my symptoms and clearly more capable than I led them to believe. I knew for sometime that the IP didn't really understand AS and how it really affects people but them calling me a liar, downplaying the pain and sacrifices that myself and family have made, that one really hurt. I'm going to appeal and then Financial Ombudsman next but wondering if anyone had a similar experience that you could share?

Sometimes I question myself if the pain, or at least some of it, is just in my head and maybe that's why the IP had such a difficult time in understanding my condition. I have full support from my medical team assuring me that the pain is real and that chronic pain can cause havoc in the body if it goes unchecked but it feels like I'm stuck in a grey area - can't work and can't access the financial protection provided by employer via this IP. I'm obviously now worrying if my employer reads too much into the decision by the IP that they may terminate my contract. I'm waiting for them to comment.