Hi my name is Montana. I was diagnosed with arthritis a little over a year ago. I was just recently diagnosed with AS about 5 months ago. I live in pain every day and nothing seems to help.
Florida, United States of America
Thank you so much for sharing your story with us.
Cookie Has A.S. said this on September 3, 2013 at 7:03 pm | Reply
One key thing you can do is exercise. Studies have proven that light exercise can trigger an anti-inflammatory response in the body. If it hurts even to walk I recommend swimming, or using an elliptical machine for impact-reduced exercise, but don’t push it past 2 hours.
I’ve had AS since I was 13 (my face is on here if you want to look it up), and it started in the Sacroiliac which made it difficult to walk. I speak from experience when I say that keeping fit can keep you mobile, and that the pain will increase if you don’t keep moving.
Hang tough Montana, we may not be able to beat this, but damned if we have to let it control our lives 🙂
Denis said this on September 3, 2013 at 9:53 pm | Reply
I love your name Montana. I sense you’ve come down off the “post diagnosis euphoria.” For the year after my diagnosis….I “crashed”…call it depression if you will….the shock…staring into the abyss of reality…the worse is in the night…I cut myself off from everyone. But you will emerge Montana. The light at the end of the tunnel is growing closer. Be patient…but know that you will. When acceptance comes…you’ll begin planning around AS. FACES is full of stories about folks who have “planned around” it and had great lives. You will too. It’ll be difficult…but always remember…the light WILL always keep getting closer. And in a few years, you’ll be telling the same thing to a “newly diagnosed AS’er.”
Derek said this on September 3, 2013 at 11:49 pm | Reply
My son was diagnosed a year ago when he was 15. He is an athlete with a 4.0 GPA. He makes staying physically active a priority in his life because it’s worse when he doesn’t. Denis is 10,000% right.
For the 2 years prior to my son’s diagnosis, he limped around and complained about pain in his legs, his knees etc. I mean HE COMPLAINED. We just thought he was being melodramatic and annoying and wanting attention.
Then when he got diagnosed GUESS WHAT? It turned out I have it too!
I’m not glad I have AS, but I am glad that I can understand what Grant is going through because nobody else understands. AS isn’t like cancer or diabetes — no one has ever heard of it, and you look totally healthy, so what’s the problem?
If you need someone closer to your own age to talk to lmk and I will hook you up with Grant. He has been giving himself weekly Enbrel shots since about November and has made awesome progress.
Jessica Paioff Weiner said this on September 3, 2013 at 11:55 pm | Reply
It’s good to hear you have your diagnosis so early on. I knew I had AS because my dad has it too but I had to beg for over 15years to get the stamp.
When I got my AS stamp last year at a NASS annual conforence I decided I am going to find a natural pain killer because I have been working on healing my gut for several years and didn’t want to break it with Over the counter stuff.
I accidentally found Low dose naltrexon (LDN), within two weeks I started taking it (I pay for it myself but it’s worth it, and not expensive) and it was amazing I was pain free and not stiff over night after 2 years of severe pain. I still sometimes agrevate AS through exercise that traumatises the muscle attachment site but overall I am doing amazing and can participate in life.
Don’t be afraid to try LDN it might be the solution your are looking for. I am glad I gave it a try in my desperation last year.
Tai chi qigong shibashi is great, I call it meditation in motion, it’s good for people that can’t yet do still seated meditation, it also gives you feedback on your range of motion and increases it at the same time.
All the very best
Marie said this on September 4, 2013 at 3:39 am | Reply
Love your name, it is beautiful. I have RA and a child that has AS (he is AS face 759), I know it is not an easy thing to deal with but… seems like staying positive, as positive as you can, is a big help. Lean on your friends and find some new ones here. Maybe a pain pal (pen pal) would help all of us. Just someone that knows what you are going through and can actually say they understand. See if there isn’t someone your age here and just talk. All of this is so misunderstood by others, as no one can see your pain for themselves. Not like a broken bone or a bruise, at least.
This is the best explanation I have seen as far as, the you don’t look sick part of the lupus, AS, RA, arthritis, etc. disorders.
Many blessings and hopes for pain free days for you.
Mellisa Stahl said this on September 4, 2013 at 10:50 am | Reply
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