Hi Beckie, welcome to KA.
I can tell you that these drugs are like miracles to most of the people who take them. There are some very scary side effects, true, but those of us whom these meds have helped feel the side effects are worth it. Personally speaking, my quality of life since starting Remicade 18 months or so ago is so much better. I hadn't realized how much and how long AS had been affecting me until I started on it.
I don't blame you for feeling lost. Good god, I thought I was going to explode with it all. Finding this place is one of the better things you've done for yourself. The folk here have seen it all, it seems and there's always someone willing to offer advice and support.
When you're talking to your doctors, it's best to take a list of questions or issues you want to discuss. Put a star beside the three most important to you. Then hand the entire list to your doctor to review so that he or she can ensure that things that are medically important are looked at. And don't leave until you get answers to at least the things most important. And if you don't feel you can trust this doctor and have the latitude to do so, find another doctor. It is your right.
Just so you know, I am fused in my left sacroiliac and I have four 'squared-off' (pre-fusing) vertebrae in my thoracic area (mid/upper back) and my neck has always had some pain. Through a combination of diet, exercise and meds (both herbal/supplemental and NSAIDS) I have managed to keep the damage from progressing further. Being put on Remicade really has helped alot.
I'm glad your doc is talking to you about physio. Exercise is vital to our mobility. You'll read more about that as you spend time here, as we've had numerous discussions about it. If you can get into a Pilates class, I would greatly recommend it. New York Pilates is extremely good - better than Stott because NY Pilates involves alot of stretching out that Stott doesn't.
And check out the no/low starch diet forum. Doctors, as a rule it seems, discount the importance of diet to our well being. It doesn't work for everyone, but alot of people have had very good results by lowering or eliminating starch from their diets. Enough so that it's worth trying.
And I don't blame you for being angry either. As a woman, you've probably been living with this pain on and off for over 10 years. The problems is that for decades it was believed that only one woman for every ten men got AS. The latest stat is 7 women for every 10 men, but that's quite recent and the medical community is sometimes slow to pick up on these changes. Also, it can take upwards of 10 years for the damage to become evident (i.e. fusing starting) in women. AS progresses extremely differently in us than in men and so we tend to be misdiagnosed alot. In my case, I began showing overt signs back in 1987 or so and experienced my first full-blown, almost every symptom there is, flare in 1991/92, but there was no visible (by x-ray) damage until 2001 and that's when I was diagnosed.
But you are now diagnosed and definitely not alone with your pain anymore. We're here.
Hugs,
