Face 811

My name is Christine and I have Ankylosing Spondylitis.I am 39, married to a fantastic man, and a Mother to a 20 year old daughter and a 17 year old son. I also have a genetic collagen defect called Ehlers-Danlos Syndrome that leaves my joints extremely lax and subject to slide out of joint or fully dislocate.

My pain journey began when I dislocated my right shoulder for the first time at 7 years old.  I was what you might call a klutzy child… constantly tripping and falling.  There were always mystery bruises and even doing the simplest of things I seemed to hurt myself.  It was just the way I was.  At 11, I started having unbearable knee pain that was always dismissed as growing pains because I was quite tall for my age. At 12, I fell down a flight of concrete and steel stairs in the apartment complex we lived in. That resulted in a concussion and began my near constant battle with migrainesand very strong, but thankfully sporadic, back spasms. At 13, I had a kidney infection and subsequent allergic reaction to Sulfa that kicked my pain into overdrive for quite a while.  That, too, was dismissed as overdoing it. The odd injuries and assorted pains continued into my mid to late 20s.  I was always told by family that I had a weak immune system, low pain tolerance, or even worse that I was just looking for attention. That never failed to make me feel like I was some kind of wuss when every day was a battle.

In my late 20s, I was finally sent to a Urologist after having several years in a row of what was deemed kidney infections and recurrent hematuria.  I went through so many tests just to be told that everything was normal other than blood where it wasn’t supposed to be.  As a final measure, he ordered an ANA test. That came back abnormal so I was sent to a Rheumatologist.  His exam revealed the EDS (then just called Benign Hypermobility Syndrome) and he said between that and Fibromyalgia it explained my pain.  I was given a prescription and sent on my way.  One of the drugscaused more trouble than it was worth so I adopted a yoga practice that helped immensely.  So much so, that I weaned off all medications except a stomach acid reducer for quite some time.  During that same time, I was in an abusive relationship.  In an argument, I was shoved to the floor and kicked repeatedly in the neck.  That was when my neck pain really ramped up again. When I moved my head I certain way it sounded and felt kind of like someone sitting down on a cushion and the air was rushing out of it… That was avery strange sensation.  An MRI showed that the neck was damaged, the disc at C4/5 was bulging, and I had arthritic changes; I was told it looked like the neck of an 80 year old, and to try to tolerate the pain as long as I could. I had completely changed myself trying to be what this person wanted only to fail and be constantly berated for being too fat, too needy, and in general being alive (or at least it seemed that way) most days. The worst was knowing that my children were seeing this behavior. It was a never ending cycle of trying to please the unpleaseableand me beating myself up for being an idiot for tolerating things I swore I never would, but then saying I didn’t go into the marriage to quit after a few years. That toxic relationship finally ended in June 2006.  After deciding I was done dating, I was going to focus on taking care of myself and my children. I wound up meeting my now husband. He couldn’t have been sent to me at a better time. We were married a year later.

In late 2008, I came down with food poisoning caused by Salmonella. It was awful but fortunately no one else in the family had it so it was easy to narrow down where it came from.  For months after, my pain seemed to increase exponentially.  My neck, right shoulder, and arm, as well as my low back, left hip area, and leg… some days even my toes.  I was eating Ibuprofen four at a time like tic-tacs… never knowing the dangers, nor really keeping track because I just took them when I was hurting.  I woke up on a Sunday morning feeling like I had a kidney infection.  A few hours later I was in the ER due to the pain.  The tests revealed that it wasn’t my kidney at all… I had eaten holes in my stomach and esophagus from all the Ibuprofen.  The blood tests also revealed that my ANAs had increased dramatically over the past few years and later doubled again within a month.

It took a while but by August 2009, I was finally into a Rheumatologist.  She confirmed the Ehlers-DanlosSyndrome and Fibromyalgia, did so many X-Rays I lost count, and ordered MRIs.   The MRIs revealed Ankylosing Spondylitis and a 2.2mm cyst on my thyroid.  My PCP and Endocrinologist basically said tojust watch the cyst and then check it out further next year but, my rheumatologist said it had to come out so I could get started on Biologics.  They removed the cyst and half my thyroid.  Her insistence that it come out caught the tumor just as it was turning malignant but it also revealed that I had another autoimmune disease, Hashimoto’s Thyroiditis. Eventually, the other half of my thyroid will need to be removed because it was already scarred from the Hashi’s at the time.

The real shocker for me was when she said due to the joint damage, I had likely been suffering from untreated Juvenile Inflammatory Arthritis all along.  After everything I had been through, to finally have answers and know that what I was feeling had been validated, I broke down in tears. It wasn’t going to fix me but it was a place to start to try to minimize further damage.

I was found to be fusing in my left SI, mid-back, and neck with a now herniated disc at C4/5 (Successful ACDF in 8/2010, no surprise to me that I was fully fused at 1 year post op year with the surgeon saying I looked 4 yrs post op but he laughed when I asked if that could be an upside to having AS), ruptured disc at L4/5 and herniated disc at L5/S1 both out to the left side and with bones spurs. I’m currently trying to deal with increasing pain from the SI/discs as long as I possibly can before going to the next step after 6 rounds of epidural injections that were of absolutely no benefit.

My husband has been by my side the entire time; Patting me on the head when I was balled up in pain, listening to me rant at the ineffectiveness of the entire medical system, and feeding me because I forgot to eat or honestly didn’t feel like getting up to make it myself.  He’s taken up so much slack around the house that I don’t know how I would have ever made it this far without him. Unfortunately, it still seems every step forward is a never-ending battle but it is one I am willing to fight.

Georgia, United States of America

One Response to “Christine”

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

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