Ankylosing Spondylitis is an autoimmune arthritis that affects as many as 2.4 million Americans. It is a chronic degenerative disease with no known cure. AS causes severe pain and fatigue, disabling those it affects.
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Hi, my name is Kelly and I have AS. I am 32 years old married with two kiddos, a son who is 4 and a daughter who is 5. Living with AS is hard being a young wife and mother, but it helps to know there are other women out there just like me.
Hi again Denise!
Some places have weekend water workouts but feel free to ask them to consider starting them. I think classes would fill up pretty fast.
Good luck with the meds - I know it's really hard to find what works for you and the "experiementation" can be a real pain.
Talk to you soon!
Susan
April 14, 2012 - 10:46am
Hi, just found your group, it sounds great, I have Ankylosing Spondylitis, too, just diagnosed a couple of months ago, but have lived with limitations and disability, since childhood - they did not diagnose told me - nothing wrong with you - all in your head! Back pain, everyone has that, so what. So have put up with pains, dozens of symptoms. Found this site what a find! Its not in my head- whoa what a find.
April 13, 2012 - 5:27pmHi nanfitz!
Thanks for joining; I hear Montana is a beautiful state.
If you want to share your story with us, I'm sure other readers will be able to give you the benefit of their wisdom.
We look forward to hearing more from you!
~Susan
November 13, 2011 - 10:50am
HI, I'm so excited that I have found this group as I live in rural Montana and groups are few and far between. Looking forward to a lot of great information and support.
November 6, 2011 - 3:08pm
Hi Susan,
Thanks for your response and suggestions. I will be starting an aquatics group soon. Unfortunately the only times available are during working hours but it's important so I'll find a way. I agree that it will help. For the past few weeks I've been in this terrible pain cycle that has made it nearly impossible to move but the doc put me on predisone a few days ago and the pain is easing up enough that I'm definitely more comfortable. He and I meet tomorrow and we'll talk about taking me off humira and trying enbrel. Don't really want to do an IV drug like Remicade but if it comes down to no life or remicade, then I'll acquiese. Today, I'm just happy to have some relief. Since I was diagnosed a year ago, it's been difficult to keep up with my work life as well as the things I'd like to do but I have hope. Thanks again Susan for writing and I look forward to hearing from you again.
Denise
October 3, 2011 - 3:08pmHi Denise
Thanks for finding us and joining this Group!
You are still very young at 52 and it's a shame to see your old activities like dancing and walking your dog become something of the past.
Have you tried an exercise like water aerobics? It's very low impact, a group activity so you are with others and really good for people with your kind of pain and limitations. Anything done in water is good.
There are also options like adaptive Yoga or Pilates that are specifically designed for those with limitations. You should check for these in your area.
Let me know what you think and I'll try to have a joke for your next time!
~Susan
All, I'm glad I found you. I've been looking for a chat group to share information and experience with regarding AS. I am a lot older, 52, but I'm pretty sure I've had AS most of my adult life. I ran the gamut with a variety of clinicians from Chiropractic to Physiatrists trying to get help with neck pain, tendonitis in my elbow and hip, low back pain and the list goes on. Aches and pains every where. About 15 yrs ago I started to have tummy troubles. Last fall, I "interviewed" a new family doc. We chatted a bit and I told him, if you could help me figure out my belly and back issues, that would be amazing. We talked at length and he ordered the genetic testing. Bingo! I've been on humira ever since but I'm loosing ground as far as functionality goes. I used to dance 3-4 nights a week, walk the dog for a couple miles several times a week - even at 50 : ) Now, I do a little puttering in my gardening, a little housework, and shopping trips are broken up so I won't have to use pain killers because I spent to much time on my feet. I'm stuck and it's sad for me to see dancing, hiking, yoga, activities I loved, become part of the past. Anything you'd like to share - tips, tricks, jokes, inspiration- I'd love to hear from you. ~Denise
September 28, 2011 - 11:11amHi Everyone
It's good to see some people talking - hopefully more will join in soon!
I have plain old Spondylitis (a milder case in my lower spine) that causes daily pain that is sometimes nearly unbearable in the morning although gets far better during the day. It began at age 36. I did about 25 sessions of physical therapy and recently had shots in my lower spine and yet the only thing that has really helped is walking, swimming and working on my core.
For those of you with A.S. - are you in any kind of physical therapy or exercise program? Is it helping?
Best,
~Susan
Hi! My name is Mary Grace and I too am a young mother with AS. I'm 35 years old with an 11 month old daughter. I've been living with AS at least 5 years and I am so happy to find a group to share experiences with. It is difficult but I want to always be optimistic with finding ways to stay healthy and get myself physically active in order to live with AS. If anyone has any recommendations on what kind of exercise or yoga videos to use, please let me know.
July 22, 2011 - 2:08pm
jilljo,
Welcome, we're very glad you found us! No, this most certainly is not all in your head.
Please feel free to talk with us anytime, post a question or just hang out !
Best,
~Susan
April 14, 2012 - 10:55amThis Comment