Hi, Believer7. Thanks for posting your heartfelt message. I'm sorry to hear you and your husband are going through this, yet am glad he has a diagnosis to work with. As someone with spondylitis, I'd like to share my thoughts about your questions.
--First, regarding ways to help manage the condition and improve flexibility, here are some pointers:
1.) Exercise. It might seem counterintuitive, but exercise is one of the biggest keys. Here is a link to a slideshow video that I believe will be informative and encouraging for you and your husband:https://www.youtube.com/watch?v=-hHUsq6BuJc&feature=youtu.be
The video contains photos and information contributed by spondylitis patients and advocates to help promote the benefits of exercise.
Also, on this SAA site, here is a link to a DVD that contains stretching exercises designed to help AS and other forms of spondylitis:http://store.spondylitis.org/productlist.aspx?department=37#.V-aSLcZ4fDc
2.) It's important to arrange your husband's workspace and home environment so that it does not aggravate the condition. For example, if he uses a computer at work or home, make sure he isn't looking down at the keyboard because that puts strain on the neck. I have a second monitor at face level, stand up on thick mats to type, etc. Having the right chairs to sit on is also very important. I would be happy to share more specifics if you are interested.
3.) You might want to look into making ibuprofen lotion to apply topically. My rheumatologist recommended it. In my experience, it helps a lot with reducing swelling and pain. For a 10% solution, use a mortar and pestle to crush 120 uncoated tablets, and mix the powder in 8 ounces of lotion. I will be happy to provide more specifics about where to purchase the tablets and the best lotion I've discovered for absorption.
4.) The emotional component is very important. A wise SAA mentor years ago told me to focus off the pain--not to try to block it mentally, but to learn how to embrace whatever is happening around me. This has been a huge help emotionally.
It's also very important not to have your identity centered on the disease. For example, "I have spondylitis AND I'm doing these things" is more powerful than "I have spondylitis BUT I'm doing these things." Using the word "and" gives a much better perspective.
I'm not sure what your religious beliefs are, but praying has been super-helpful for me. Being able to talk with God about how I'm feeling--similar to the Psalmists in the Bible, is comforting. I don't believe God causes suffering but I believe He can help good come out of it.
For example, I've been learning how happiness is dependent on our circumstances, but joy in connecting with God (and for me as a Christian, with Christ) and those around us, can remain untouched by the level of pain we are in. I'm not saying it's easy, but I want to encourage you and your husband that the more you can embrace what he can still do, and minimize focusing on things that aren't workable anymore, the better you will feel individually and as a team.
Lastly, it will be very important for you and your husband to be able to talk about how you are each feeling, without having it be threatening. My husband used to be uncomfortable with hearing that I had an extra-rough day with the spondylitis symptoms because he couldn't fix it. Thankfully, we've learned how to share what's happened during each of our days as a kind of "weather forecast." Being able to say "Today was stormy" or "Today was sunny" and provide specifics, while not having the day impact the evening's enjoyment, has been beneficial. Sharing both challenges and victories is very important.
--Secondly, regarding medications, the good news is that more options are available these days than years ago. I can't speak directly to what will help your husband the best, but researching medications on this site can be helpful. Learning how each type works can provide good insights. It's always helpful to have a doctor who will explain things clearly and be a partner with you and your husband in making those types of decisions. You might want to consider getting a second rheumatologist's opinion.
--Thirdly, regarding what to expect for the future, I would like to encourage you that all of us spondy patients have so many more tools than folks did in prior decades to help us live long, enjoyable, fulfilling lives. While every case is different, I'm encouraged by the ongoing successes of fellow patients and what SAA is doing to help improve outcomes.
Well, this was a very long response, but I hope the information is helpful for you and your husband. If you would like to communicate outside of the forum, please feel free to send a private message, and I can share my email address with you.
With warmest wishes,