Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club New to forum- 28 years old

Hello all,
I am new to this! I am here for support and to get insight about my recent diagnosis of AS and Fibromyalgia. Let me give you some background about myself and what I'm dealing with.

Starting at about age 17 I was having constant pain in my back and hips. I've worked in theatre production since the start of high school, so I always thought it was just from doing manual labor- i.e. Building sets, heavy lifting, climbing ladders, pulling ropes- that kind of stuff. After high school I went on to study theatre production in college and now work full time in the industry. Even before high school I always had trouble with fatigue and muscle soreness and pain. In February of 2014 I had a silly accident and completely tore my ACL in my left knee, had surgery in late March, and went through 11 months of physical therapy. During that time the pain in my lower back and hips got worse from all the extra strain from PT. I went to my primary dr and had some blood work done, finding that my SED rate was very high, as well as some other abnormallities. It wasn't until summer of last year (2015) that I finally realized that my back, hip, and muscle pain was not normal and went back to my orthopaedic dr and said "Give me a new hip, I'm done with this one!". He ordered MRIs of my pelvis and lumbar and we found that there was degeneration in both of my hip joints as well as something weird going on in my SI joints. He then sent me for a CT scan and full body bone scan. The findings were that I have a CAM hip impingement in my left hip, osteoarthritis of both hips joints with bone spurs, and bilateral sacrolilitis with bone spurs in my left SI joint. Sent me for blood work testing for RA, lupus, psoriatic arthritis, HLA-B27, and inflammation markers. RF factor-negative, HLA-B27 negative, but inflammation markers were again high. He talked about the possibility of AS but suggested I see a rheumatologist, so I did. After several months of more blood tests, X-rays, and numerous physical exams she diagnosed me with AS and Fibromyalgia.
I am currently on Sulfasalazine 1,000mg twice a day, ibuprofen 800mg 3 times a day, Cyclobenzaprine 10mg 3 times a day, and recently started Humira injection twice a month. I am starting to feel some relief, however the constant pain persists. I am hoping to get significant relief soon because I almost can't take the pain anymore after 10+ years!

Anyways that's my story, and I would love some feedback from you guys on how you manage day to day and stay hopeful, as well as any advice you'd like to offer

Thanks

Hi MLliberty,

Thank you for sharing your story. It's all too familiar regarding long road to diagnosis.

Glad your orthopaedic doc referred to rheumatologist. the experience varies a lot from one person to another. I am able to manage pain by a combination of activity (yoga, cycling, light weights), rest (not too much or too little), stress, diet.

I like the team approach to managing AS. have a team of support, they don't even have to know they are on your team :-) my team generally has a member of the clergy, a psychologist, SAA staff person & support group people, yoga teacher, family member that I can talk to, a rheumatologist, PCP, and an old friend. I actually have some positions I need to fill.

For me, I've had some level of pain every waking hour for decades. but, some days, weeks, months and years are better than others. 5 years ago I was about to get both hips replaced and was a mess. these last several years I'd give my pain a 2. so, it's been great.

Hope this helps. Call me next week if you want to talk 800-777-8189.

Kind regards,
Rich