Since late October I've been experiencing pain in my hip, low back, butt, pelvis and legs. The pain will flare up for a few weeks, get so severe I'm almost in tears, and then subside and I feel completely normal again. I've been to countless doctors since then, and they've said it could be anything from musculoskeletal issues, to endometriosis, to ovarian cysts (which I do have). So far I've had 2 ultrasounds, an MRI, full bloodwork, and x-rays of my spine in an attempt to get to the bottom of this.
During my most recent flare up, I went to the urgent care and the doctor there took x-rays of my spine and told me there was "sclerosis" in my sacroiliac joint (not MS, just regular sclerosis, whatever that means). He told me he thinks I have a condition called Ankylosing Spondylitis (AS), a form of rheumatoid arthritis, and that I needed to go to a rheumatologist. When I got home, I (of course) immediately began researching this condition. When I found out it was an autoimmune disease I totally freaked!!! Apparently, as the disease progresses your spine can just fuse together, and so can the cartilage in your ribcage, so you end up being a bent over humpback with a restricted chest cavity and reduced lung capacity! And the only treatments are massive quantities of NSAIDS and biologics, which lower your immune system, which I would never even consider!
I've heard too many horror stories of people on those immunosuppressive drugs dying from simple infections and common colds. I may as well have HIV/AIDS if I take those! Plus the drugs aren't even pills, they're injections, which I'm absolutely terrified of getting.
I'm freaking out worse than I ever have about any potential disease ever, and I'm really hoping someone one here can maybe provide some comfort or advice. I had 2 blood tests done, HLA-B27 and a blood sedimentation test, and both came back negative/normal, however I am severely deficient in vitamin D. When I got the test results I thought, ok, normal means it's not AS, but when the urgent care doctor called me for a follow up he told me he still thinks I have it because of the x-ray "sclerosis" and because it responds to ibuprofin, and I still have to go to a rheumatologist!! I don't even understand, because everything responds to ibuprofin. He told me that's an indicator of the disease, but I've had regular sprains, dental pain, period cramps, pulled muscles, etc. respond to NSAIDs too so I don't see how that's such a definite indicator.
I'm so terrified that I will be bent over, in constant pain, and on oxygen by the time that I'm in my 40s (I'm only 27 now), my health anxiety is through the roof, and I can't even get in to see a rheumatologist until next week. Anxiety medications aren't helping at all, and I don't have a therapist right now.
Does anyone have this disease, or know someone who has it? Everything I've found online, literature about the disease and personal stories alike, have been HORRIBLE! Depressing, morose, terrible prognosis...basically a slow, painful death and a life of misery.
I've never been so depressed or afraid. I've been praying every day that I don't have this disease, and by some miracle it's something more benign. Please, if anyone has any input about this that isn't going to bring me to tears I would be eternally grateful. I'm having a terrible time dealing with this, and my family and friends have dealt with so many false alarms because I have HA, now that I have a potentially real disease they all just dismiss it and no one has been supportive at all. I don't mean to complain, none of us on here ever do, I just need to connect with people who understand what it feels like to have severe HA and face the possibility of a real, actual, lifelong, debilitating disease.