You know your body better than anyone else.  Yes, exercise is helpful and a body in motion is more likely to stay in motion.  And yes, there is a hill you have to get over, where at first you feel like it's awful and then eventually it becomes enjoyable and actually very helpful.  Now, having said all of that, I go back to knowing your body.  One of the best pieces of advice, or guidelines if you will, about exercising I've received is this:  Don't do today what you can't do again tomorrow.  So, if it's increasing your pain level, lower the intensity and/or duration.  There is no exercise too small!!  Break it down to the simplest, smallest amount of stretching that you can do without hurting and you know you can repeat again the next day.  Then increase in tiny amounts.  It is better to do this and build your strength and ability, then push yourself, hurt yourself and ultimately give up on trying to be active.  Trust yourself and don't beat yourself up for doing small steps.

I don't trust physical therapist for AS... One I went to just YANKED on my right leg saying we "needed to get my joints moving"... I said WTF ARE YOU CRAZY?!?! I yelled it hurt so bad in my SI Joint. So ridiculous. They also had me on a bike which hurt my SI joint/butt a lot. POOLS are your friend.

Do exercise in a heated pool. I started with physical Therapy. I really didnt think it was helping until my insurance stoppedd paying and I couldnt go anymore. I joined on my own and it was way worth it. I worked my way up from the pool to the treadmill to the bike and then to weights. Feel great and when I miss going to the gym I can really feel it

I think it is just a matter of finding out what is good for your body. It is important to keep the joints moving but too much exercise can be harmful

Healthy get pain when they work out, no pain no gain. I have adjusted to pain 30 years, pain from AS. Not from use of drugs but from keeping emotionally strong. Stay positive, everything you do must come from within. All healthy people need exercise. Try to think exercise all the time.Remind your body muscles you really need them. When you wak out the gym, exercising is not over. Always keep your body metabolizing....see people dancing and sing, reading a book, talking, biking... They are happy. Sure we get tired, take a break. It's not easy, it's up to you to guide yourself. Embolden your positive thoughts follow though. We are all watching and hope you do well. When we are weak and need help you become our inspiration, this is How we help one another. We all get off track, as myself. I am 50lbs overweight, 67 . I just started physical therapy . Twice a week. I know I am the way I am through my fault. But physical therapy is great. They're getting these old pistons of mine turning and blowing off steam. Despite my sacraliac being froze and disk 2,3,4,5 fusing(neck), to me is a part of life. Remember life is good and it's all up to our own self. Take Care.

Okay call me crazy, but I have started training for the annual RAGBRAI, which is the ride across Iowa by biking 470+ miles over 6 days.  Over the last 2 months, I've ridden 3/4 days per week between 10 and 25 miles per ride.  I was really concerned whether the joint pain would be bad after riding.  I have been pleasantly surprised that I actually feel quite well on those days after I ride.  Biking is a relatively low impact exercise and keeps your lower joints in motion.  I continue to take the Humira every 2 weeks and Lodine 2x day.  Walking or running, especially on concrete or asphalt is a killer.  Along with the biking, I also cut way back on my sugar intake and have lost weight while gaining endurance for the longer rides.  I know biking may not be for everyone, but for me it has fit the need to stay active while minimizing impact on the joints.  I hope somebody else can pipe in that biking has helped them as well.  Steve

It's sad that we refer to walking as "exercising". After any exercising I pay. My lower back, hips and knees are worst.

Hills are bad for me and for the exercise, I started and above my knees started hurting and couldn't do them one day and got booted for pt., now I get pain in my knees a lot sitting, standing, walking.  When I do go shopping after a while my hips and knees, ribs hurt.  I have to stop, when I start getting pain or it will just get wores.  Its weird but I think I need more stretching then exercise my muscles just get so tight, I can't get then to loosen up, never after any exercise.  I wonder if thats what happens to you or anyone. At first I did use a pool and it was the best thing I've ever done, but it was years ago, I just played with the kids no excercise.

Diagnosis is everything, exercise makes me 10x worse, as nerve damage affecting my legs that is the biggest problem; serious spasms that make walking impossible at it's worst

Exercise that's painful is a problem.  You need to look for activity that does not cause pain.  For me, it's the pool first and foremost, plus other stuff if I feel up to doing other stuff.  When walking started hurting, my rhumy sent me to physical therapy.  The therapist gave me some good exercises, and made a huge difference by changing my shoes.  If you're walking in flimsy, cheap shoes as I was, pain will likely follow.

I'm on NSAIDs, muscle relaxers and non-opiate pain relievers. I have more pain the more movement I have generally. I have scoliosis that rotates my trunk and hips to the right so gross movement acts to tighten my muscles till I can't walk they are so tight. My shoulders and neck get tight from anxiety which I repress the symptoms of. It gets so bad that even a light touch causes extreme pain. I have to use a walker to walk without falling down and I actually have to use my arms a lot to stabilize myself and my forearms have always have been thin, no matter how many preacher curls I did, so it hurts my arms.

I have almost no core strength now. Lying flat on my back causes severe muscle spasming. On the X rays I've got no curve to my back. They never X ray my neck but I can't bend it back to touch the wall when my back is flat against the wall anymore.

I've been exercising faithfully for 30 years or so, best way to keep my girlish figure, I went to the doctor when the pain from a work out turned into what was thought to be an injury. Nope, its the AS. Currently, the pain from teaching martial arts, getting my own work outs, yard work, housework, etc I have had to stop completely and start over as a beginner. It was a challenge.  I find now that movement, like dancing to the radio, kata's in karate, are the most beneficial. Too many reps, as in weight lifting really hurt later. Some aerobic classes with too much emphasis on reps or even sport conditioning, hurt. Everyone says to get in the pool!! Too cold, just too cold. I hope you find what helps!! It is a challenge, make it fun!! And dont take it too seriously, keeping our spirits up really helps lift the pain just a little!! I keep telling myself that all day everyday!!

I've been struggling for 11 years. Age: 32. Diagnosed finally last year, after many "misdiagnosises". Swimming, walking, physical therapy, all caused me joint stiffness and terrible pain. Cos scretching is required, and rest or sleeping exacerbates pain. Finally I met with Pilates. I DO RECOMEND. If my work allows, 3 days a week I attend a course with my trainer. (Not a group class because I can't perform as a normal person without AS.) Very slowly but triying to fix the knee (especially) from rotation. AS affects my hips and knees. I sometimes have trouble in even WC,  I can't walk fast, CANNOT run, but after Pilates, I feel much more better. If I quit lessons for a week or ten days, strong pain captures me; neck, or elbow or shoulder, but always right leg (sacroiliac and knee.) My right leg is thinner also. Pilates (but a serious, disciplined and compassionate trainer crucial) really works...

How are you doing Sunflower? It's been a couple of months since your 1st post. I hope you found an exercise routine that works for you. Even though I know what exercises work for me, getting started b/4 every workout is the hardest part. Btw, for some reason, walking is the worst. Keep looking. I totally relate to your experience about giving up on activity you liked. My wife reminded me how absolutely miserable I was when shopping for a new bike. I wasnt upset about getting a bike. I was pissed because i had to buy a bike because i couldnt do what i wanted to do. I loved playing rugby, running and teaching high impact aerobics.
One suggestion, try a personal trainer. Those folks have some pretty creative exercise ideas and are very motivational.

When I asked my orthopedist about martial arts, he told me, "even if it exacerbates the symptoms, keep it up". And it absolutely does--at least, it sure did today. :O But you have to be smart, recognize your limitations, and treat yourself gently. A little pain could mean you are forcing stiffened joints to move more freely, but a lot of pain could lead to spasms and other unhelpful results.

Don't feel like there's a minimum quantum of exercise you have to start with. Walking around the block hurts? OK, try half the block. Does that hurt? Try to the end of the driveway and back. Nobody is grading you and nobody is judging you.

Finally, working with a physical therapist might be a good way to find helpful exercises that don't result in as much pain. Good luck.

I feel worse too but that's more than likely because I over do it.  If I feel good enough to excercise I try to get the house cleaned, walk the dog, mow the grass, etc.  I think if we take it slow, exercise may actually work!

Exercise helps as long as you do not over do it. I try to do something every day, even if it is only 5 minutes of moving (and sometimes it is). I use my Wii for Yoga, try to take a walk outside, or ride my stationary bike. If the exercise makes me hurt, I stop, it will only get worse. It is a game of balance and you need to find the right balance.

Thank you so much for your answers!  I feel so much better knowing that I am not the only one.  I struggled for 10 years to find an answer to my pain.  Doctors have always told me that if I would exercise, I would feel better.  I kept saying that it hurts to exercise. They always say that it is because I am out of shape. I wish we had an indoor pool in the town where we live, but we don't.  One of my goals in the next couple of years is to move to a town where I can get better medical care, and where we can access an indoor pool for exercise.  I will have to talk to my doctor about physical therapy.I used to love to walk.  I would walk every where if I could.  I loved to garden and work outside.  Now all of that is gone.  I miss the old me.  Just knowing what is actually wrong has helped me tremendously.  Now, knowing that others have similar experiences with trying to get back in shape is helping me too.  Thank you everyone.

The pain gets better when I walk a little, but I get so tired I don't know if it's worth it. There are good days and bad days. I have had two very bad nasty physical therapists.  One kept telling me I could do this and that even though my legs won't go that way anymore. HE WANTED ME TO GET ON A TRAMPOLINE!  Oh dear. I have serious balance issues so I don't think that was a good idea but he was a idiot. As fate would have it, I did find one perfect and extremely helpful physical therapist but he got fired for giving the bosses wife a deep tissue massage. LOL!  Ps. That's the truth!!!

Maybe you should start with even more simple exercises like walking around in a shallow water pool, getting water jet and stuff. When I first diagnosed with AS, I did biking, running and aerobic kind of stuff. Those really made it worsen.

I would go with the recommendations i could not do exercises even the simple stretches the physio therapist wanted me to do i would end up worse. I was doing exercises in the pool helped so much to strengthen so small muscles that had become weak due to the way i walked. I have not gone in a long time. Its to hard to travel the half hour to town. I am waiting for my arthritis to settle down a bit. Some of the exercised i did were to walk back and forth across the side length of the pool. Grape vine walk, funky walk ( you rotate your leg out to the side as you walk forward), put out my arms to add resistance and to help strengthen my back muscles.  And just leg stretches and swimming. I had problems with my hips and knees for the last 16 years so we focused mainly on getting the stretch back in the stabilizing muscles and groin muscles. But what ever you do. Dont push yourself to hard. And stay positive it helps in so many ways. I hope all the best and hope that my comment does help you out in some way. We are all in this together

Take it slow, very slow and sometimes not even slow is good.  Do a little easy walking on a flat surface, then rest.  Warm water swimming is incredibly helpful and physical therapy is a wonderful place to start.  Build up your strength, but take your time doing it, you'll get there.  For us 'patience' is a virtue (:

The pool helps, but I always have pain- either way. I was told not to stretch a ton without warming up first. I have pain, but I do get more energy when I exercise. You have to fight the thought that exercise is worse. It is so hard when you know it is going to hurt. Dang disease!

With AS, pain = no gain. You have to go slower. If you're feeling uncomfortable, sore or even down-right sick, give it a rest. Truly, don't over-do it.

Congratulations on feeling better! Be patient. You'll get there.

And also stretch, stretch, stretch. Remember to give yourself time....it will take longer but it will be worth it than before....hang in there!