A.S. Face 0969: Brooke Wilson

Face 969Brook wilson

My name is Brooke and I’m 33 years old. I was diagnosed with Ankylosing Spondylitis about 5 years after the first major onset of symptoms, which was during the pregnancy of my daughter. During pregnancy, my OB said it was just round ligament pain causing my issues… the fact I could barely walk and was told to essentially be on bed rest when at all possible due to the pain. I ended up with preeclamsia and she was delivered 5 wks early.  Thankfully, she was healthy and has been to this day.

After 6 months my pain still hadn’t gotten better. I was sent to a pelvic pain specialist who gave me Flexeril and also sent me to a physio-therapist. The exercises there didn’t really help, but the flexeril and the TENS unit they gave me did slightly. I pretty much continued with my new normal. I could get things done but my tail bone area was constantly tender to the touch and would go numb at times.  Hips sore each morning after sleeping.

I continued this way for from 2009-2013. I then had what I now know is a flair. In March 2013 I crumbled and began going downhill fast. Pain started in my chest (sternum really) and I went to the family dr. I was diagnosed with something similar to pleurisy (can’t remember the name).  I was given predisone pack and said to come back in 5 days. I called in 4 because I was worse… now tender to touch my collarbone. I came in and was told this can happen but they ordered a chest x-ray just in case of anything more. Nothing showed up so they upped the prednisone and was told to come back in about 10 days.

I continued downhill to the point of my arms feeling on fire and tingling, my legs would go numb one at a time… sometimes from the knee down, sometimes higher up. Most of the time my chest and collarbone you just couldn’t touch. During this entire time I wasn’t saying anything about my tailbone or middle back because that had all become so common to me but it had also gotten worse to touch. Getting dressed was something awful!

This downward spiral actually took place in about 2 months time. Blood test were done and didn’t show anything. My dr thought to send me to a rheumatologist but the few in the city all had 3-4 month waiting times at minimum. After a few calls and my chart sent, I was able to get an appointment in a month. That month was agony. That appt didn’t shed much light and the rheumatologist actually admitted that I was a mystery to him.  He started me on sulfasalazine just to see what it did, maybe it would help.  He also drew massive amounts of blood for various new tests… all came back fine.

I went back a month later and I had very small (if any) improvement. He was still stumped. I was sent to see a friend of his, the head of rheumatology at a University 4 hours away. After a few minutes with me, seeing the intense sensitively of my upper chest and the odd sensitivity of my right toe (still weird to me) he knew it was AS.  Also, said I had fibromyalgia. Through him I now know I’m positive for HLA-B27.

I came back home with this diagnosis and my rheumatologist continued to be somewhat skeptical, yet came up with a treatment plan that helped with symptoms. Today I’m on a variety of meds, which have to be changed up time to time, and have started weekly Humira. I’m not in a crumpled heap that I was even just a few months ago, so that is awesome!

I continue to have flairs every few months, but I have more good days than bad which allows for more good time with my daughter and husband. Without these two by my side I’m not sure what I would have done. My husband’s support, my daughter’s smile and my faith have sustained me. God never gives us more than we can handle. I’ve always believed this and will continue to do so, even with AS.

Tennessee, United States of America

2 Responses to “A.S. Face 0969: Brooke Wilson”

  1. Dear Brooke,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Very nice story Brooke. glad the mix and match of meds is getting a blanket over the inflammation. Weird the numbness in arms and legs…My left foot has been tingling for years, and at times burned….but down to “sensation” now. If I lay on my back…my arms and legs go numb! Bizzaro.

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