A.S. Face 0696: Cindy

My name is Cindy I am 53 years I use to say young but I am now saying old because I feel it.
I was diagnosed offically with AS June 2010 but it was a long time to get diagnose correctly.
I fought back pain from I was 22 told it was strain and I need to do more stretching and strengthing moves.
At 23 started teaching aerobics  told I was just over doing it.
At 24 my first pregnancy 1982 pain just from being pregnant. Back pain ( tailbone area) during labor unbelievable!
At 28 my thrd pregnancy once again just lifting and carrying my boys and being pregnant.
All this time still teaching fitness aerobics and weigths and chiropractic care.
29 Mayo CLinic unclear diagnosis have some inflamation prescription, left with fibromyalgia on chart.
At 30 pain is making it hard to teach take care of three kids we go to KU Med tests diagnosis Fibromyalgia stop teahing immediately per dr.
Gave doliboid and tylenol and amitryptlan (sp) at night. Tried two other prescriptions similar to doliboid.
Couldnt tolerate the meds put me on antipressant dont remeber which, took iron injections to help build up immune constantly run down sick.
32 Plano Texas back clinic unclear tender points some inflamation in lower back prescription.
When I stopped teaching the pain ate me alive so I started back slowly, stopped antidepressant couldnt function. Tylenol and blue ice rub.
34 went to Rhuemtologist xrays didnt show anything to much a little inflamation kept diagnosis as Fibromyalgia dr.was skeptical of this!
36 put me on Celebrex tried again to add anti depressant couldnt tolerate it so just Celebrex and chiropratic care and tylenol.
I had to quit teaching fitness training at 39 couldnt fight thru it constant fatigue, couldnt work and teach and care for my children.
Went thru nasty divorce partly due to what I know now as AS.
Celebrex til 44 big heart scare and I have ugly history in family of heart issues dr. says no more just tough it out with tylenol stretching and heat.
I would lose weigth starting in fall about 10 pouns thru out the winter 🙂 even thruholidays that was a plus. but the pain as the seasons changed I would lose appitite had to focus so hard so I could function with the pain.
50 big move to KC husband insists to try one more time went with issues of GI ran a lower MRI on back radiologists says spondylitist needs further
examination with Rhuemetologist. UGH another new dr. he takes xrays no spondylitist diagnosis Fibromyalgia gave me Cymbalta. within minutes of taking it
hurling and pass out, call nurse says take it on full stomach I DID she replys try again. I am done with this dr. Have to travel for new job I drive 40 minutes to the office if in town days I am pulling over hurling alongside highway due to pain. Husband begs try one more go to dr. listed on AS web site didnt know at the time.
She sees me looks at me it was a beautiful warm sunny day runs xray tells just fibromyalgia I go home in tears. I call back two months later take the test results from radiologist where it says spondylitist she little irritated runs another xray and blood test for AS the HL says it will be a couple of weeks, but says I dont think it is because you are not complaining and in enough pain. I leave mad test comes back positive call for appt. she a wonderful nurse pratitioner she reviews tests xray shows fusing SI neck shows arthritis active in neck blood test positive. Here is kicker Mayo does the blood test?? She starts me on Enbrel that very day gives me tramadol and for bad times Vicodin that she says they will monitor my useage with it. Finally I have an answer and it isnt all in my head like so many said for so many years.
The AS is taking its toll on me slowly now it now effects my hips knees shoulders and most recently my feet. But at least I know what it s and I have adjusted my lifstyle so that I can still do some of the things I love and learning to do new things that work around the AS.
PS I quit losing the weight 😦 like I use now thatI can manage the pain but I will take less pain any day.
Sorry this went on so long but getting my diagnosis was a long time coming, hope this helps.

Missouri, United States of America


8 Responses to “A.S. Face 0696: Cindy”

  1. Cindy, Like so many others, your story mirrors mine. Thank you for sharing your story, and no need to apologize for the length of it. I’m glad you did, because It is an injustice to those who suffer to have their integrity questioned time and time again. Ignorance is not bliss. Hoping you have found treatments that help you and that you are coping.

    Kim

  2. Dear Cindy,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  3. Thanks for sharing! I think most like you,are glad to finally get a diagnoses. I know I was tired of doctors thinking it was all in my head or I was just trying to get pills. We know something isn’t right. But some doctors just blow us off. I finally got lucky and have a compassionate doctor and I know why now she has lupus. Thanks for your story!

  4. Hi Cindy, thanks for your story. Mine is very similar in a lot of ways. Suffering for years and humiliated by lots of doctors. It’s hard to have AS but knowing you have it is way better than not knowing! Good luck with it all…

  5. Hi Cindy! I am face 479. Take a look, we tell the same story. Glad you are here.

  6. Thank you for sharing your story Cindy. I am #480 I believe….. we all encourage one another together. Sounds like you used to be in my area. Blessings to you….. Stephanie

  7. Cindy,
    It is a relief to have a diagnosis, yes. Unfortunately it doesn’t go back decades and heal the damage done to our bodies, mind, soul, families, friends. I am coming to point in my life where I have chose to disconnect from those who were in disbelief & turned away from me. I have found that is a starting point to my healing. I am Face#700. I wish the best to you, and I sure hope we can stay connected somehow. I don’t have half the energy I used to, and have had to cut out so much and step back to rest, it helps more than pushing through.

  8. If you would please email me at Cookiehasas@aol.com with your mailing address I will be happy to send your Faces of AS wristband to you.
    Thank you so much Cookie

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