Comments for Athletes Joined Against Spondylitis

Comment on Who tells the story of ankylosing spondylitis? by Doug Klinkebiel

Doug Klinkebiel — Wed, 26 Oct 2011 07:09:29 +0000

I’m 52 years old and have lived with AS now for 35 years(diagnosed by an excellent orthopedic surgeon when I was 19. Never been operated on for AS). I can remember the exact day it struck: the morning of my last HS basketball game my senior year at age 17. I was an honorable mention all-state player. When I went to bed the night before I was in the greatest physical shape of my life. When I awoke, I could barely get out of bed or walk.
The Oregonian newspaper published a commentary of mine( Living With The Pain) on March 13, 2005. You might find it in their archives or at OregonLive. It was about living with this disease and what it is to be on pain medication.
I am a part-time writer and am currently writing about what it is to live with AS. Let’s face it-physical pain from AS is only half the battle. I know what it was like to hear people say he can play basketball(in my 20′s), but he can’t make it into work. But no one ever saw me take 5 minutes to get out of the car when I got home, make it to my recliner, and the day was over.
No one ever saw, when I felt the sneeze coming on, that the tears would make it down my cheeks before I ever sneezed, because I knew how bad it was going to hurt. No one ever saw. Because we often don’t want them to see. We often suffer alone.
Hang in there people. Find a doctor who has compassion, like I have, not one who expects you to be tough. Because we’re already tough. Believe me, If you live with AS, you’re tougher than nails. I don’t care what meds you’re on or not. It’s not about being macho. It’s about living with less pain. It’s about quality of life.
May God bless you all.

Comment on Who tells the story of ankylosing spondylitis? by tim duggan

tim duggan — Tue, 18 Oct 2011 12:41:02 +0000

im 48 was diagnosed 5 years ago.had back pain/problems my whole life went thru about 15 docs b4 one finaly found out the truth.i tested positive for hlba-27.enbrel killed me the paramedics brought me back.when your on it you have no immunity.i caught bacterial pnemonia and encefilitis at the same time.my neck and back are fused.im still working but take alot of sick time.the pain is unreal.i pray for all of us that have this terrible disease.stand tall and keep fighting.

Comment on Who tells the story of ankylosing spondylitis? by Andre

Andre — Wed, 21 Sep 2011 21:11:46 +0000

I have read all your stories and can relate to all of you. This is like an invisible disease and I have bad days and really bads..never good days. I am 46 and was very physically active…now I can’t drive…have had both hips replaced and am on Embrel which I am not sure is working.

Comment on Who tells the story of ankylosing spondylitis? by Kirsten

Kirsten — Tue, 13 Sep 2011 15:13:42 +0000

i have AS i am 15 and was diagnosed 4 months ago, its so painful, i cant really do any physical activities which is upsetting as i love sports and was part of a cross country team before its soo hard to sleep at night, im on strong tablets and i swear they just do NOTHING! but i cant have stronger ones because of my age, i have hydrotherapy but the pain after it is unbareable, most people are shocked because i have this at such a young age :/

Comment on New AS research on PTF joint by carol long

carol long — Wed, 31 Aug 2011 19:24:01 +0000

i also have AS- I was put on Golimumab (commercial name sympony) at 50cc injections once a month- not onli did my flare up lesen in intensity and duration, but after a year i started getting back some of my range of motion.
This is a TNF inhibitor drug that weakens your immune system so its not right for every one and you will be more prone to infection (esp. upper respiratory) There are others like embril and Humera that are very simular -just slightly weaker- I have had no bad side effects, rasher, headaches, stomach complaints etc. – it may be a possibility ask you Rhumatologist if this might help you- other health factors will have to be taken into consideration (i have gained back abt 30cm in my range of motion and suffer more stiffness than actual pain now.

Comment on Who tells the story of ankylosing spondylitis? by John

John — Fri, 26 Aug 2011 11:34:38 +0000

I’m a 38 year old male, I was diagnosed with AS last year after ten years of constant pain and occasional uveitis. I’m HLA-B27 positive.

I’d just like to say don’t discount the Norman Cousins story out of hand. I am convinced there is also a psychological aspect to AS, especially the pain. The reason I know is that 3 months ago I read a book calling Healing Back Pain by Dr John Sarno which deals with chronic back pain (called TMS). I have been pain-free ever since. I still feel stiffness and an occasional ache but not even at the level were I would take a painkiller. Before this I had never had a pain free day in ten years. Good luck everyone.

Comment on Another Mountain climbed…. the same one but a different way! by Wendy

Wendy — Wed, 24 Aug 2011 11:53:57 +0000

Awesome, Kenny!

Comment on Who tells the story of ankylosing spondylitis? by Matthew

Matthew — Mon, 15 Aug 2011 23:29:26 +0000

Another good Ankylosing Spondylitis “chat” site is answers.ankylosing.org. It’s a good online Q&A support community for discussing AS symptoms, treatment, medications, diet, research, etc.

Comment on Humira!! by Wendy

Wendy — Sat, 13 Aug 2011 00:12:37 +0000

Fantastic, Ken!

Wendy

Comment on Hills to Climb…Literally. by Kenny

Kenny — Thu, 04 Aug 2011 20:57:29 +0000

Hey Gerry! Welcome to Joinedagainst! I will upload some pictures on my next post!

The walk was good, I had some aches in the lower of my back but no pain no gain hey?

I felt brilliant afterwards, as I usually do after exercise.

Since then I have been on Humira injections which have seen me go from exercising every few days resulting in pain to playing football (soccer) 4 times a week and training in the gym 3 times a week!! Life changing!

More to come on that though in the next 2 weeks!