Hey there!
I have Ankylosing Spondilytis- it is painful, but there are lots of things that you can do that will help. I SO hear you about being in major pain when being still and feeling better when you get going. It’s the geting up part that is so hard :no:.
There are some excellent medications out there for AS- the biologic stuff (remicade, simponi, etc) is great if you need it- it does mean learning to give yourself shots (or having a family member do it) or having regular iv sessions, but they are quick and it can make you feel so much better. Methotrexate (a very mild chemo) can be helpful for a lot of folks, but I couldn’t tolerate it. There are some other pain meds that can help day to day, and if you need something fairly strong, make sure you ask your Dr. for it- you deserve to be able to get through the day in one piece.
As far as non- med solutions, the anti-anflamitory diet (paleo diet) worked wonders for me! Good for you in getting off gluten already! All starches and dairy kind of do me in, and as much as it kills me, I try to avoid them. LOADS of fresh veggies and fruit, lean meats and a good omega-3 balance makes a difference. Heat helps the joints and connective tissues- long hot baths (my perfect husband built me an “AS” bathroom with a jetted tub and heated floors:winkgrin:) have saved me plenty of times.
As hard as it is, try to move as much as possible. Riding IS therapy!! It has made such a huge difference in my life. Even when it hurts too much to really work (I do dressage, and that sitting trot sometimes… ouch), we just ride up and down the hills, putz around bareback or I just go and groom her and give her cookies and love. My horse always makes me feel better.
I hope that you feel better and get really good medical care. Learn to advocate for yourself and make sure that the DR really listens to how you feel and what you need. Hang in there- you are right on the edge of feeling a LOT better :yes:. Please feel free to PM me if you have ANY AS questions- I have tried just about everything out there for this disease and am happy to share my experiences.
{{hugs}}
Victoria