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February 17, 2011 - 12:04pm
Enthesitis/Enthesopathy
I haven't seen much on the forum about enthesitis or enthesopathy ("inflammation of the entheses, the sites where tendons or ligaments insert into the bone"), but that seems to be one of my biggest issues when it comes to chronic pain. This does not seem to be addressed by many GPs or even specialists, yet I wonder how many people who have been diagnosed with Fibromyalgia are actually suffering from this.
If anyone has specifically been diagnosed with this, what are you being treated with? I have an outstanding approval for Enbrel, which has not really been proven to help with THIS particular pain, but apparently Remicade has.
Any input you might have would be appreciated.
Tracy
P.S. I have looked all over for a diagram of Enthesitis points - one of my rheumatologists used one at each visit - but have not been able to find one. Please let me know if you come across it!
_____________
Any information I provide is through personal experience ONLY....I am not a medical professional, though I could write a book on the impacts of chronic pain and the treatments I've tried!
We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. ~E.M. Forster, Novelist
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but I will keep on searching ....
I found some information about enthesopathy yet, when I went to some sites dealing with Arthritis, I didnt find a lot of information.
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That's what I've come across, too; there is some info on the Spondylitis sites as well, but still no diagrams!
Tracy
Any information I provide is through personal experience ONLY....I am not a medical professional, though I could write a book on the impacts of chronic pain and the treatments I've tried!
We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. ~E.M. Forster, Novelist
I agree about fibromyalgia. These patients probably have a seronegative arthropathy and have not been correctly diagnosed. Even those of us who have been correctly diagnosed via HLA-B27 gene marker, x-rays, enthesopathy, etc., can't get good treatment.
I refuse to start taking immunosuppressants, but the NSAIDS aren't exactly working either. I'd like to get off all meds and find a good integrative physician. My symptoms have been especially bad for three years, at which time I acquired hypothyroidism, and I believe that has made my pain worse. Doctors refuse to treat hypothyroidism aggressively, and I continue to have symptoms of that, despite acceptable blood levels.
I went from a healthy, athletic 44-year-old, to an out-of-shape, overweight cripple, mainly because my posterior tibial tendon has wasted away from the inflammatory process. I've done PT, meds, conservative use of foot, etc. But three years later, I'm worse because it hurts to exercise, and I can't do anything on my feet. I was doing the recumbent bike (BORING!) for awhile, but my trochanteric bursitis in both hips made that impossible too. Everybody tells me to swim, but I can't turn my messed-up neck, and I quit swimming years ago because I don't like sharing a lap lane. I'd like to get my own pool so I can do water running.
I went into a Spondylitis website and put the question out there; here is a diagram, and also a link to specific information on Ankylosing Spondylitis and Entheses locations.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1002099/?page=2
Any information I provide is through personal experience ONLY....I am not a medical professional, though I could write a book on the impacts of chronic pain and the treatments I've tried!
We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. ~E.M. Forster, Novelist
I was wrongly diagnosed with fibromyalgia many years ago. I was just recently diagnosed with AS. I went to the rheumy today for pain and swelling in my hands and feet, and she said it is enthesopathy related to the AS. Very painful! I'm now on a longer course of Prednisone
--Kim-- (age 30)
<> Multiple T-spine herniations and DDD = two-level thoracic discectomy (posterior) done 7/6/11
<> Dx'd with Ankylosing Spondylitis (AS) - Nov. 2011. Current treatment: Humira, Diclofenac, Prednisone, Oxycodone, and Flexeril.