Do I or Don't I Dilemma? Newly diagnosed.

I'm a 52 yr old 'healthy' woman, with controlled asthma and migraine/cervicogenic headaches. My professional background is biomedical research/clinical trials.

After 10 years of back and neck pain and various opinions of the causality, I decided with fierce intention to change my lifestyle in Jan 2020. I have since lost 40 pounds, exercise regularly, and eat healthy minimizing carbs and fried foods. Despite achieving my weight loss goal, there has been not one bit of pain relief ---but many other benefits 😉. Frustrated after giving it my all, I returned to physiatrist and Ortho/spine doc in June 2021 who recommended ESI which provided minimal relief and PT which worsened pain. Xray showed spondylolisthesis in lumbar area worse at L4-L5, measuring 8 mm. Physiatrist and Ortho/spine docs recommended RFA both sides L3/L4, L4/L5, L5/S1 for pain which extends into hips. And possibly follow with PRP and ESI for hips if no relief. Suggesting that spinal fusion would be necessary eventually because it would become too painful for me to walk. That was a shock to hear since I hike and mountain bike lotsa miles 3-5 times weekly and have returned my body to that of an athlete (who requires Advil/Methocarbamol/Salonpas capsaicin patch for pain relief which is never complete and just grrrrrinding.

Last week, while waiting for RFA to be scheduled, I met with my primary care provider (who also works in the rheumatology clinic part-time). We discussed the recommendation for RFA, which had received consensus from 2 other spine/interventional pain docs. My PCP hesitated after asking me to demonstrate all areas of pain, questioning the source of pain in my hips. She immediately ordered hip x-rays which showed bilateral sacroiliitis grade 1, radiologist concurred ankylosing spondylitis is likely.

While I feel like this frightening 'kinda' diagnosis came outta nowhere, there were some possible predictors. And I am not really sure it's a definite diagnosis but it's may be headed that way.

So...About 8 years ago, had facial swelling, severe eyelid edema and was referred to immunologist. I had some markers of lupus like elevated CRP, elevated ESR, but ANA negative do didn't meet lupus diagnostic criteria. And was put on numerous courses of oral steroids and was monitored with labs and had continuous ESR elevation but intermittent CRP elevation, still ANA negative. 3 years ago, had sudden onset of bilateral vertical diplopia and severe light sensitivity. Was immediately hospitalized and tested for myasthenia gravis, MS, and stroke but negative for all 3. It was never diagnosed as uveitis or iritis. Intermittent double vision with severe light sensitivity has continued, with possible cause identified my neuro-ophthalmologist as thinning of iris in both eyes with numerous microholes which are likely distorting vision and creating light sensitivity.
None of my back/neck pain medical team considered this part of my history until my PCP noted severity of hip pain + back pain and she decided to consider sacroiliitis and order hip xray.

So now I wait for a team of docs to guide me thru next steps. And I busy myself learning more about ankylosing spondylitis.

And I'm scared and keeping this possible diagnosis from my family until I understand it myself. Don't want to frighten my husband of 30 years and our 5 amazing sons ages 16 to 25. Im holding on to positive thoughts like my current healthy athletic body, knowing it could be worse if I hadn't made my health a priority 2 years ago.

Thank you all for creating this community. You are wonderful for your sharing and caring.

I appreciate your thoughts and wisdom.