Sarah, I have similar problems with my knees. It began in my early teens. In my case, We treated it with rest, braces, crutches, etc. for several years. I was told that after puberty, it would resolve. At 19, they finally did exploratory knee surgery. Back then, there was no MRI. What they found was a slight increase in fluid and a very inflammed synovium. The inflammation was so bad that the tissue was being pinched between my femur and patella every time I bent my knee. The result was that it was being eroded and a large piece was hanging off.
The biopsies confirmed chronic synovitis and the increase in fluid was a result of the inflammation. After all, swelling is the result of fluid. This combined with my chronic tendonitis was the first red flag which should have led to my Dx with Spondylitis, unfortunately, nobody considered that and I suffered for almost another 20 years before anyone found the arthritis in my spine and put all of my joint problems together with the gut problems that was eventually Dx as Crohn's. Five years later, I had similar findings in my shoulder. Go figure! Still nobody put it together.
I asked about
whether or not some of my pain was from FMS, but my Docs all agree that I have three documented inflammatory diseases and those could well account for the body/muscle/nerve aches and pains that I suffer with. Since FMS is primarily a Dx after exclusion of other diseases/disorders, that can't be the case for me.
I'd be very interested in whether you could have some form of Spondyloarthritis, because of the spinal arthritis. Of course, this may well be my own biased opinion because it's what I know a lot about
, but it could well be a possiblility that has not been considered for you.
Is it possible for you to get to another Rheumy who may be more interested in a complete evaluation for you? I'd want someone to check the tendon and ligament insetion points in my knee(s) as well as the Achilles and both shoulders, since those are the most common to be affected by SpA. Your SI joints should also be looked at and you should consider being tested for HLA-B27, which is a genetic marker that c=is often present in those affected by SpA. That in itself does not mean you have the disease and being negative does not rule it out, but many Docs insist on testing for it.
Take a quick look through the Symptoms and Diagnosis sections at spondylitis.org
and see if some of your symptoms match up. THat may help you decide if it's worth following up on.
In any case. I hope you find some answers and relief soon.
Keah a.k.a. Wormy
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