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My Story

My name Jen and I am 38 years old and I have A.S.  I was diagnosed in July of 2013.  I have had on and off issues with pain that was progressively getting worse.  I kept thinking it was just me being hard on my body and because I work a physical job.

I dealt with this pain since about 2010.  I had wicked sciatica for the good part of 6 months along with horrible piriformis muscle pain.  I would cry a lot because I didn’t know what was going on with my body.  Some days I couldn’t walk without the help of a cane.  All I could do was lay on a heating pad or bags of ice to find some comfort.  This is difficult to function and do daily tasks and also look after your own children when you are unable to walk without pain.

I went to the doctor so much within this time frame that I thought I was going crazy.  I would have good days and then bad days.  I was given the standard medications of naproxen and some muscle relaxers and was sent on my way.  I continued to have problems.  Went back to the doctor and then came the referral to the pain management.  After a cort injection and no relief, I was referred to a spine surgeon and was x-rayed.  According to the spine surgeon I did have 2 bulging discs, but nothing horrible or would need surgery or even warrant my pain that I am saying I have.  Again, sent on my way, and referred back to pain management for more shots and more narcotics.  This was doing nothing and I was getting small bouts of relief, and continued pain.  Going back to my doctor, physical therapy and neurology doctors, no one was finding anything.  Nothing.  Again, more crying and being upset over what my body was putting me through.  Why do I have this pain?!

I was at a loss.  Finally, after looking up on the internet myself I found a syndrome that described me.  Piriformis Syndrome.  I took this information to my doctor and he agreed and referred me to see a physiatrist for treatment.  This doctor was amazing.  He gave me pain medication and also gave me trigger point injections directly into the pirformis muscle.  Finally, I had some relief, but not for long.  He was puzzled because I kept saying that the sciatica is subsiding and the muscle is now relaxed, however the back of my hip and lower back area was still very painful.  I kept saying “bone pain”.  He asked if I ever had a MRI of my hips.  I said no.  So getting used to this whole referral thing, I went and had my MRI.  I was happy that finally we were maybe getting somewhere with what is happening to my body.

Results – bilateral sacroilitis.

I was shocked as I only had pain on my left side and the MRI read I had inflammation in both sides.  He explained to me that this is seen as a major indication in Ankylosing Spondylits.  I said say that again, and not because I didn’t know what he said, it’s because I knew that disease very well.  My grandmother suffered from A.S.  She was severely hunched over and fused.  We did the HLA test to which I was negative and also a SI injection…WOW…that hurt and I didn’t get relief from it.  So with my new information and the physiatrist knowing there was family history.  Onto my referral to a rheumatologist.

Ironically, I went to the very same clinic as my grandmother had gone to.  I brought my MRI with me and finally met with my rheumatologist.  This appointment lasted for an hour.  He looked at my MRI and listen to my history and said we need to start you on treatment.  You have AS.  I went blank after that.  He listed all the medication I would need to take and what way did I want to go and I was just hearing it but not processing it.  When I walked out of the exam room and into the waiting room, I looked at my Aunt who came with me to watch my children, I just started cry.  Then I called my Mother and told her, and cried some more.

I deal with this still.  Even though I have my wonderful rheumatologist and all my medications, I still go through a lot of pain.  I wouldn’t wish this on anyone.  I have good days and bad days, and those bad days are horrible.  They can last a few days and I can’t do anything, but I still push on.  On days that I can’t, I don’t.  I stay home and rest.  I have learned the hard way if I push too much, I will be worse for a longer period of time.  I attend nursing school full time, work part time.  Two years until I graduate and things might be a little easier with not having my time taken up so much in so many places.  I do worry about the future often, but I take things now day by day.  My children are my main priority and my schooling is second.  I am very thankful for the support with family and friends that I get.  That helps me to get though things.  And laughter.  I make fun of myself so that I don’t become a miserable woman, and just shake my head and say some choice words to my A.S. under my breath.

A.S. put a wrench in my plans, but I am not letting it stop me.

Wisconsin, United States of America

3 Responses to “Jen”

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

  2. Thanks for sharing. Keep fighting. Never give in. Never surrender. Your determination and positive attitude and friends and family will walk with you on the good days, and carry you on the bad ones.

  3. All I can say is you are a rock star. You have the strength within you of 100 men. Your positive attitude is an inspiration!!!

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