Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group New To This

Hey!!!
I am really new to this. I have had other diseases and injuries but AS has completly thrown me a loop. I am 18 years old and have just found out about this a couple weeks ago. Right now i just feel really lost. I have support from my mom and my boyfriend and all, yet i still just feel really alone. I am just trying to figure out what is going on with my body and AS. I am just confussed on what it is and what i can do about it. I have pain in my spine, neck, jaw, shoulders, wrist, hands, ribs, knees and ankles. NSAIDS have not worked on me and i am on prednisone. Being on prednisone kind of scares me. But the NSAIDS get me extremely sick. I guess I am just looking for a light at the end of the tunnel.

Hi Sweetie & Welcome!

Yes you are welcome and among friends here just like YOU.

Anything you need just ask plenty of information and support!

I am sorry of all you have had to go thru at your young age BUT there is lots of hope for you.

1 thing...if you haven't please post this in the MAIN forum so alot of are members will see it and can welcome you.

If you need anything let me know.

Hugs,

Lisa

Thank you very much. i just posted it under the main forum. it is just scary right now.

HI.
I suggest you talk to one of the ladies that is doing the NSD. Use the mian Index to find those areas of discussion.
Take all the advice with what works for you. But I would not stay on prednizone very long at your age.
WAtching your diet and exercise seems to be our main focus.
Do you have a good support system? They need to know exactly what is going on.
Welcome!

Similar to you. I was diagnosed aged 20, am now 43. At the time little information was available, there was nothing published on the condition and my Consultant advised me to keep my weight down and remain very active especially swimming (front crawl) and walking. Today my pain is under control with a number of medications, and I am still very active (half marathon a few weeks ago) all of which I think are down to the good advice I got all those years ago.... and the future is not so bleak. Keep active and positive. It doesn't need to be so bad.

Good Luck

ShellBell, for a moment I thought you were my niece...she is 18 and we call her ShellBell...after reading your post, I think you are me about a year ago.
I'm new to all this as well and though I can't honestly tell you things will get ALL better, I can safely assure you they will get better.
I've only been an AS sufferer (knowingly) for a couple of years now but I was also concerned about being on prednisone for an extended period. I was hospitalized for Ulcerative Colitis and diagnosed with AS at the same time. Prednisone was the only drug I responded to and finally got me out of the hospital after three horribly long weeks - I was also planning my wedding from my hospital bed...lol, what an idiot I was.
It takes a while to ease of the Prednisone and going too quickly can really suck, I crashed while stepping it down by only 5mg a week and the pain was more horrible than I can even bear to describe.
Once they get you off that stuff, there are quite a few options...in the few hours I've been on this site I've already learned of a few drugs I will ask my doctors about. Biologics like Enbrel and Humira seem to be good but are prohibitively expensive (at least in Canada). Narcotics offer short term relief but the risks there are pretty obvious. I've also been prescribed with a version of Lyrica called Gabapentin (sp?)
At this point I don't know if the fist-fulls of drugs are helping or if I'm just learning to cope with the pain (probably a bit of both) but coping with AS is getting easier.
The psychological effects are probably the most troublesome though. I guess it takes time to accept our limitations and learn to live with AS. I still insist upon doing things I shouldn't and pay a heavy price for my foolishness...I'm either stupid or stubborn (probably both).

Best of luck ShellBell, it does suck but it does get better...at least it can. Diet and exercise seem to be very popular suggestions too.

Shellbell18
I am so sorry to hear how you are feeling. there is another young lady on here name amsher. She is 20 and I think you and she would have a lot in common as to dealing with AS at such a young age. I wish I had a magical answer for you. Has your rheumy talked to you about any other meds?
Feel free to ask any specific questions about dealing with your AS and I am sure there will be someone here on the forum that might have some answers for you. You asked what it is... I was diagnosed 3 years ago and I still don't know that I have an answer for that.
What can you do about it? Listen to your doctor and ask him as many questions that you want. Be sure to write them down on a piece of paper to take with you. i would also suggest that you take someone with you when you go to your appointments to take notes. As a patient it can be a little overhwelming.


I hope you find the answers you are looking for. good luck to you and your family.

Raquel