Could I have AS? I have no idea!

First, some background. I am a 45yr old female. In my mid 20's I started experiencing excruciating knee pain in my left knee, to the point where driving became an issue. Eventually I had keyhole surgery to investigate but the results were inconclusive, leaving me with no idea of what could have caused the pain. Post surgery, the constant pain eventually subsided but has always been present periodically. I have thought little of it and got on with my life as I now had three young children. My left elbow has always given me problems when bending and stretching it, which is notable when carryinga bag (e g.) with the arm extended. I have always been extra sensitive to light. In 2019 I had an exceptionally stressful year and in early 2020, when things personally had calmed down),I began noticing that my body was constantly aching..... all day, every day. It felt like the aches one may experience after doing heavy exercise two days previous. Initially, I put it down to a bad pillow (not bed though as we had not long upgraded to an expensive orthopaedic mattress), and thought symptoms would improve, but the aches were constantly there. It was akin to flu, where the ache penetrated right into the bones. I contacted my GP and explained my symptoms (although this was early in the pandemic so I never actually SAW a doctor), and he sent me for a blood test, which highlighted an elevated level of rheumatoid factor. This was referred to a rheumatologist, but the levels of RF were deemed too low for them to see me and the Dr 'diagnosed' me with fibromyalgia, despite having NEVER even seeing me. He offered me pain relief but at the time, the pain was there constantly, but not at the point where it was unbearable and I want to avoid medication for as long as possible. I last spoke to the Dr in September 2020.

The pain continued, some days worse than others, but it always seemed more pronounced when in bed, either in the evenings or upon walking during the night, and then again in the morning. I put this down to being still and calm and my mind having a chance to focus on the pain rather than usual daily tasks. Strangely, during the day I seemed to almost 'forget'about the pain (unless I had to bend down or get up from a kneeling position). In September 2020 I started a new job that requires me to be on my feet and 'on the go' all day. I did not, and still don't, have any issues about doing this job and, like I say, my pain doesn't affect me at all whilst I am working.

However, when I get home and sit for my dinner, it feels like my body stiffens and my lower back and legs seize up and the most intense wave of fatigue hits me. My ankles become stiff and when I stand I walk like a 90 year old for a few steps until things loosen off. If I sit for prolonged periods, that is me done for the night, but if I continue 'doing things', I seem to be fine up to the point where I stop. In bed, every night, if watching television, I have to lay propped up on pillows (as you do) with my fist supporting the lumbar region of my back, and constantly stretch out my legs to relieve the aches. When getting to sleep, it takes time to find a comfortable position as when I am curled up, my back wants to uncurl, and when I am layed flat, it wants to curl and stretch out. I wake up almost nightly between 3 -4am, and have the same problem trying to get comfortable enough again to fall asleep. Sometimes I do and sometimes I just doze until morning.

Whilst the aches have been a constant for several years now, I'm not sure exactly when my back started becoming such an issue, as it has appeared to creep up on me, but I would have to say around 5 or so months now.

Again, I attributed this new back pain as a consequence of being on my feet all day at work, but the longer it has persisted, and is getting more pronounced, I don't think it is.

There is a lot of family history of autoimmune diseases in the maternal side of my family, with my sister, mum, aunts and grandmother all suffering from a wide variety, from lupus to MS to hypothyroidism to fibromyalgia, so genetically, I am now than likely to suffer from something.

This back pain perplexed me for a while and I definitely had these symptoms before I'd ever heard of AS, in fact I only read about it this week and the symptoms describing the back pain describe my experience implicitly.

So I guess I'm answering my own question really. I have scoured the Internet to look for how sufferers feel in the early stages and can't really find anything that helps as everyone talks about their 'journey'with AS and focus on more established stages of the disease and managing it. IF I have it, I am at an early stage and would really appreciate some insight from others about your early experiences, what you did about it, what responses you received and what to discuss with the Dr. I know that early diagnosis can make a huge difference in managing symptoms and would ideally like early intervention to allow the progression, but HOW to do this with my fibro 'diagnosis'.

Sorry for the long one, but felt I needed to include as much info as possible. Whilst the pain has been around for a long time, this is a new possibility for my diagnosis and I am keen for advice from those who are living with AS.