AS has many presentations. Many are insidious and take a long time to reveal themselves. Pain and decreasing mobility (chest expansion, bending etc) were predictive long before newer technologies arrived on the scene. A good Rheum knew how to differentiate between muscle pain and skeletal pain. If your pain prevents you from moving and is severe enough to wake you, prevent your sleep and interferes with ADL (showering dressing) you can bet that you have a form of spondyooarthrisis. For decades there were no solutions except Indocin, methotrexate and steroids and these did not work well. The US Gov't asked Johnson and Johnson to develop a drug which spoke to Crohns Disease and they manufactured Remicade. Over 20 years they tested the new drugs in Europe and found great success. Over time Remicade came to the US and was used for Crohns and subsequently to Rheumatoid Arthritis. The drug worked differently than most in that it attached itself to tumor necrosis factor TNF which preventing this component from entering the cells and causing inflammation and pain and swelling. since then many TNF blockers have emerged known as Humira and others. Blocking the cytokine TNF has produced amazing results. The class of drugs is now a gazillion $ success story for the US Gov't in it's history of orphan drug development.
This long story is with purpose, If you feel that you are less than confident in your doctors opinion, get a 2nd opinion at a center for excellence in your area. Travel to a renowned center for this illness can be worth it's weight in gold Getting a correct diagnosis can be daunting and many here took years to be diagnosed correctly.
Your decision to forego procedures is wise. Doctors want to relieve suffering. Your job is to stick with this until you find the doctor who wants to understand your disease and then to treat symptoms in a patient manner. My own Rheum after meeting me waited a year before starting Remicade. Patience in your case sounds like a virtue.
NSAIDS may cause stomach issues alcohol does as well so modify if necessary. Gut issues are common with this form of arthritis as TNF attacks rapidly dividing cells in the human body which are found in the gut and in the eyes. Know also that at time AS can produce cardiac issues. If that comes your way, manage it promptly.
Do not fret. Many of us started young and have led wonderfully full lives with limitations....and every person in the world has some limitations.
Best of Luck.
Edited by WhiteCell (Yesterday at 08:01 AM)
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.
Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.
ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~