A.S. Face 1059: Lin Reynolds

???????????????????????????????I was injured during a basketball game when I was 17 (almost 20 years ago).  I sprained my 5th lumbar.  Ever since then, I have had one injury after another regarding my back.  It started in my neck a few years ago (2009).  I have 9 herniated discs, from C3-C7 and L3-S1.  I have easily seen over 40 Doctors in 19 years, all of which have told me something different.  No one could figure out what was wrong and they all just wanted to put me on meds or do surgery.  I have been on and off meds but refused surgery.  I have had multiple MRI’s.  I have such a kyphotic curve in my neck that it goes past straight up and down and into the opposite direction.  I actually had a hospital ask me to sign a waiver so they could show their students my neck MRI, because it was the worst one they had ever seen.

All of my problems got worse in 2011/2012.  I was to the point I had to be off work for 6 weeks while I had various injections, nerve blocks, and eventually a neurotomy.  I had relief for a few months.  Then in April 2012 I started waking up in the morning with the worst stabbing pain in my ribs/lungs.  The only thing that helped was getting out of bed and moving around.  It started happening so badly I was only sleeping 2-3 hours a night.  I started, again, doing research on the internet.

I came across AS and started reading about it, and it was identical to everything I had experienced.  I made an appointment with a Rheumatologist and heard him talking about me in the hall, telling the intern he thought I was a hypochondriac.  He didn’t believe me about my discs and kyphosis in my neck, and said AS usually only affects men.  Well, he did the bloodwork and of course it came back with the gene marker.  He did exactly what I asked him NOT to do, and put me on NSAIDs.  I refused to take them.  It continued getting worse.  I was also diagnosed with Psoriatic Arthritis.  This year everything was so bad, I couldn’t even open a water bottle, could barely dress myself, and it was really affecting my job.

I teach Pathophysiology at a college in the OTA Program and also do PRN OT work.  I used to be extremely active.  I have my Pilot License, I skydived, bungee jumped, ran, was active in sports, but can’t do any of these things anymore.  I am 36 years old.  I refuse to take NSAIDs and know what the side effects of them are.  I gave up gluten in April 2013 and my symptoms have improved dramatically.  There are periods of time where I am actually pain free, although it usually doesn’t last very long.  I try to do yoga because it feels so good and helps my episodes occur less frequently.

There is so much more I could write but I don’t want to bore you, LOL.  I think my biggest frustration in all the years I’ve seen Doctors is that none of them ever thought to test me for this.  It never occurred to them that all of my discs are herniated and my neck has a kyphotic curve because my body has been in inflammation mode for years.

I am still new to this diagnosis and it’s sort of like when I am not hurting as bad, I do not think about it.  I was transferring a patient recently who tried to fall on me and it exacerbated all of my herniated discs so I have been on pain pills again for the last 2 months.  I am frustrated and not sure what to do next.  Thank you for putting this website together and giving us somewhere to turn for information!

Texas, United States of America

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4 Responses to “A.S. Face 1059: Lin Reynolds”

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

  2. Lin,
    The medical community often mistakes AS for other things for some reason. I was diagnosed a very long time ago, then when I began to have more problems, I sought a different doctor because the original diagnosis actually came from a chiropractor. With copies of his xrays in hand, I found a doctor. He moved away, and that is when the circus began. Finally found a doctor who beLeighved and began aggressive treatment. Keep fighting. Ask for Tramadol, try herbals (I use Turmeric, Ginger and Cinnamon in capsule form). I have good luck with keeping as active as possible. RA has set in and forced me to quit work. Good luck.
    Leigh #775

  3. After 36 years with AS, I started the wheat and gluten free diet, take Align Probiotic ( helps digestion ). I had to retire because I kept compressing and hernia ting discs. Take all the stress out. Retire and dedicate your life to nutrition, diet, and exercise for three hours a day. Keep moving.

  4. Lin-Don’t be silly. You have an inflammatory disease. Try anti-inflammatories!! When I was diagnosed in 1982 there were only a handful of anti-inflammatories available-there are many now!! Don’t suffer in pain. Find one that works. Perhaps you have read the fine print on RX bottles that in effect says “your doctor believes that the benefits from taking the anti-inflammatories far outweigh the possible side affects” You won’t know unless you try. Once you get the best one for you, you will be in less pain and be more of a human and do more things you like!! And the benefit from doing those things snowballs into feeling better. I’ve been on anti-inflammatories for over 30 years and have had minimal side effects. Any time I tried to quit them I was unable to because the pain came back. My intent is not to boast about how fortunate I have been but only to help you.

    Greg

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