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Ankylosing Spondylitis, CRPS/RSD neurogenic sympathetic foot pain

Jun 07, 2016 1:19 AM

I went to see a pain management doctor today. The first time in 15 years because I believe that my first one caused CRPS/RSD by doing a "flared injection". She Seemed pretty understanding and spent time to answer my questions. I feel my pain was validated although I'm not confident about the treatment plan. She diagnosed me with Ankylosing Spondylitis and neurogenic sympathetic pain. May try lumbar sympathetic block, Zipsor, acupuncture. My pain is primarily in my foot. Does anyone have experience or advice about this?

Jun 07, 2016 8:10 PM

Invisiblepain, I don't have any advice on the dx. I have DDD, OA, and fibro among others dx. My pain specialist spent 2 years giving me epidural steroid injx all down my spine and I had very good results with it. I wish you all the best with this new doctor. Hugs & prayers you get hold results and pain relief! 🙂💕🙏🌼

Jun 09, 2016 12:57 AM

Thank you!
I went to see another pain management doctor who says I do not have RSD anymore and my foot pain is likely mechanical. I will see a Rheum to consult on the AS. It's so hard to feel like no one can help, much less figure out what the problem is, but I am working on knowing that my pain is real and not feeling invisible.

Jun 09, 2016 1:35 PM

Sometimes it takes months or years, and multiple docs to get the answers. For instance, after being dx with fibro in 2012 and complaining something else was going on (due to other symptoms), it wasn't until 2015 they found sjogrens via a buccal biopsy, and hypothyroidism with thyroid damage via other tests. And I've complained of arm, hand, neck, shoulders & head pain since 2011. A 3-4th doc just found I have facet stenosis, Foraminal Stenosis, & retrolisthesis of several discs; all needing surgical repair.

Keep documenting. Change docs. Get 2-3 opinions. Do whatever you need to do to get answers and relief. Hugs & prayers you'll find the right doc to do this for you! 🙂💕🙏🌼

Jul 19, 2016 9:28 PM

I was diagnosed in December 2015 and began with a pain in the foot :(
worst of Ankylosing and people look and not understand you !!

Jul 20, 2016 7:18 AM

Leap, I'm sorry. It is very hard trying to explain our conditions when you already know the person(s) not going to comprehend it. Hugs love & prayers you can find the support and coping methods in our community family! 🙂💕🙏🌸

Jul 20, 2016 10:59 PM

I am still waiting to see the rheumatologist. It's a 3 month wait. I think there's a 10% chance that I will get some answers even after I get to see them. Other than my pain management Doctor, no one else has been able to even comprehend the pain.

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