A.S. Face 0576: Kelly Jones

Hi, my name is Kelly Jones I am 25 years old and was diagnosed with AS in June 2011. I have always been a pretty active person and have never really ever been a “sick” person. Well, all that changed shortly after I had my daughter in 2007. After having my daughter in October 2007, I became very sick. I had my gallbladder taken out in December of 2007 (My daughter was only 6 weeks old) and another surgery in June of 2008, due to feminine issues related to giving birth.

After my second surgery I was feeling much better and decided to hit the gym to finally shed my baby weight and get back to my pre-pregnancy weight. A few months after working out, I noticed a slight pain in my lower back. I chalked it up to doing something stupid and maybe pulling a muscle, and that it would eventually heal itself. After a few weeks, the pain did not go away and I finally went to see a doctor. The doctor suggested the same thing, so I tried to take it easy for the next few days. A few weeks passed and the pain just became increasingly worse resulting in frequent emergency room visits.

I knew they would not know what was wrong with me in the emergency room (as they never did), but at least I would get some pain relief. Eventually, the pain became SOOO bad that I could barely move in the mornings! I felt as stiff as the tin man on the “Wizard of Oz”. I saw doctor after doctor with no answers! I was referred to pain management, which did help with pain relief, but did not give me the answers I was seeking. I wanted a “title” for my pain. I spent the next few months in pain management and physical therapy, but that just seemed to make things worse.

I was told that I was “too young” to have back pain, that it would eventually go away, and one doctor (after I asked for something for pain) implied I was a drug addict and suggested that a “choose an alternative lifestyle”! Three years later I was still no where. Then, one day at work a co-worker hurt his back and as a result had to have back surgery. He said his doctor was
awesome and that I should go to see him, so I did! He was a graduate of Harvard and the attending physician for athletes for the Atlanta Falcons and Thrashers. He requester I have a lumber spine MRI.

I did this, and he gave me my results. He said nothing seemed “abnormal”, but he did see some inflammation and that it looked like the arthritic process had started in my back. He immediately referred me to a rheumatologist. I went to the rheumatologist and was asked a ton of questions and had blood drawn.

The doctor called me back a few days later and broke the news, I had AS as she had expected. She wanted me to get xrays to validate her diagnosis. I explained I had recently had a lumbar MRI, but she said that I needed an xray of the pelvis, mainly the SI joints. I got the xrays done and had complete fusion in my right SI joint, and tons of sclerosis in my left. I felt the diagnosis was bitter sweet, on one hand I was glad to know I wasn’t crazy and that my pain had a “title”, but I felt depressed knowing it was a disease I would have to basically live with.

I am constantly in painnow, but try to remain positive. No one feels sorry for me, which reminds me that I can’t feel sorry for myself and I just have to keep moving forward! I hope that eventually everyone will share their stories and the world will become informed of this crippling disease!
Research needs to be continued so that more medical options will be available for AS sufferers, and what I REALLY hope for is a CURE!

Good luck to all my AS “friends” 🙂

Georgia United States of America

9 Responses to “A.S. Face 0576: Kelly Jones”

  1. Hi Kelly,
    Thanks for sharing your story. So sorry you had go through all that. Your so right when you say research needs to be continued for more options for AS sufferers, and yes a cure would be nice, hopefully in our life time! Face # 552

  2. I remember where I was in the disease at your age stay strong nobody will ever be able to look at you and know or comprehiend the pain you deal with constantly some things change but the progression always goes on for me I now can trace this to my childhood between 18 and 39 when I was diagnosed were some of the worst years im soon to be 50 now the same thing is happening in my knees and elbows and still nobody can relate to the pain that ligaments tendons and nerves cause
    Best luck will have to catch later

    COOKIE !!!!

  3. Thanks Kelly for sharing your story. I was diagnosed in June 2011 also. It’s a scarey diagnosis, but this site helps us to not feel alone. Everyday I learn something new about this disease, and still know so little. Sending gentle hugs your way!

  4. welcome kelly hope you find so relief soon if i can answer any questions feel free to ask me anytime if your on facebook there is a good group called living with ankylosing spondylitis have a look bye for now dermot

  5. Kelly,
    My daughter Sophie who is now 30 was diagnosed about 4 years ago with AS and her story is very much the same as yours. She is on REMICADE and that helped at 80% so Tramacet are taken for the other 20%. Some days are worse than others. She also has the HLA B27 gene.
    Thank you so much for sharing this and hopefully one day there will be a cure for this awful disease.
    Wishing you the best my swet girl.

  6. Hi Kelly: Yes, A.S. really is a crippling disease–I guess I knew that, but had never really heard it said before. Thank goodness your co-worker referred you to someone who could help you! Because I saw my Family Doc quite often for pain management and treatment issues for many years, he is the one who thought I had A.S. He was right! He referred me to my rheumatologist, who I just love, and has been sooo helpful. I had never heard of A.S. until I got it. When people ask me why I am so stiff and cannot walk very well, I tell them I have A.S., and they ALWAYS ask, “What is THAT?” I am so glad that this site exists–it is raising awareness for this ‘crippling’ disease. Let any of us know if you have questions or need to chat.

    Stephania/Face #445

  7. Thanks for sharing your story. Reading the stories of others here will encourage you. Elizabeth face 40

  8. Dear Kelly,
    Thank you so much for sharing your story with us!
    Sincerely Cookie

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: