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RA blog week- my begining

I recently made a post about the disease I live with, but I don’t think I have a record of how my disease progressed and started.

I had been cast as Beatrice in Much Ado ABout Nothing at a well respected amateur group. Everything was great. I was zipping back stage, and even doing semi pratfalls on stage during the scene where Beatrice is tricked into thinking Bendick liked her. I was doing a spot of stunt training even!

So I was in perfect health.

Opening night (preview really) and I got a lift home after the after party and realised I had forgotten my keys I didn’t want to risk waking anyone up so I tried to scale a fence and because it was wet my feet slipped and I wound up swinging bodily into the fence, my hands still clinging to the top. I did eventually get to bed but by the next day I was in pain.

I was in far too much pain from such a minor not even fall!

I kept telling myself though that I had HMS* so maybe I just overstretched those joints and that explained why I had firm egg shaped swellings on the backs of both of my hands, at the same time. That okay maybe I hit the fence a little harder so that explained the huge swellings on both knees at the same time. AFter all I hit the fence with my whole body right?

It only took a couple of days for that to be so painful I was on high doses of NSAIDs. When they offered no help we went for the high dose of corticosteroids.

That worked.

I think my GP was concerned by that, I was too because I was hoping like hell it wasn’t Rheumatoid Disease. I wanted it to be short term even if I felt I was being torn apart physically, I had a fever so it had to be something related to a virus or infection. Please?

I had my first Rheumatoid factor test 4 weeks from my triggering event, and it was slightly elevated. I had my next one 4 weeks after that. And it was conclusively positive.

During all this I was seeing a physio near me. She tried everything. ANd the only treatments that helped were heat. Ultrasound thearapy just made it so much worse, accupuncture hurt and made me want to through up.

I was simply in such an active state of trauma that was persisting for weeks that all of these therapies caused more damage.

I did get to see a private Rheumatologist and we continued with corticosteroid therapy for a a few more months, attempting to taper off but I never really got below 10mg a day. Until recently.

 

 

I have refractive Rheumatoid Disease. My rheumatologist hasn’t said so but I have not responded to any other treatment Like I have this very last one I am on. My first three relapses were so frightening, and I was bombarded daily by people to move to exercise while my joints were to unstable to do so.

I simply saw my medical team less than I was interacting with friends and aquaintances who all thought they knew what I had, but didn’t.

The advice I’d give  me-then that I also need to remember for the me-now, and me-future: Just see your GP as often as you need. You need actual medical advice because the world jusy doesn’t understand this disease well enough to take on their advice.

In a relapse it is like trauma, not an old injury. You need to treat it as an acute disease. This means resting and splinting while you get the inflammation down. The relapse will pass, eventually. Once there is no more active inflammation then is the time to rehabilitate. Just like with an injury.

 

*HMS keeps changing, but I certainly was diagnosed when it was part of the milder EDS forms as I also have velvety skin, stretchy skin, and very easy bruising. I donly have a few hypmer mobile joints I score very high on the scale.