Well I’ve had the long awaited rheumatologist appointment, and it wasn’t at all as expected.
I wasn’t sure which would be a good result, if I’m being honest. As rheumatoid arthritis is no laughing matter, though thankfully there are certain medications to help with the inflammation.
However, I have certain distinctive wear and tear joint space narrowings of the joints, and none of the rheumatoid symptoms, so this meant it’s more likely my #EhlersDanlosSyndrome causing early Osteoarthritis, but the inflammatory kind. So still erosive and very painful, but less likely to be helped with medications that they use for rheumatoid arthritis sadly.
So it’s a limbo really, I can brace, splint and tape them up. Take ibuprofen, use hot water bottles and do physio and see if it helps. Though I am doing all these things already to be honest. So my future of a crafter (Jewellery and papercutting) is looking unlikely!!
I’m going to try and tinker more with food groups and try to find my triggers, if it is triggered by food that is.
So it seems my Zebra status is causing my early onset of Osteoarthritis which is notable in the hips, and now the hands. I haven’t dare touch upon the fact my ankles roll all the time, knees ache funny and elbows are odd. Because he signed me off straight away. So I think he just believes I need physio and perhaps go back to gps for help with better painkillers. (Do better painkillers even exist? Ones that don’t cause hair loss, sleeplessness, racing heartbeats, brain fog, nausea to name a few of the lovely side effects…)
I am allowed the kenalog injections in the hands, but is that in 1 joint, multiple joints? As sometimes it’s 1 thumb, 1 wrist, and 1 finger all at once! It’s unpredictable as to when and where it’s going to hurt, so taking painkillers seems weird. Ideally just reduce the inflammation would be a good start.
For now though I must just muddle through, manage the pain as best as I can, because it’s a mere 7 weeks now until my Hip Replacement Surgery. And I have so much to do to prepare for that. Any handy tips or hints? Let me know