Not been on the ‘gram much lately. I have a lot to say in my head but I struggle to get it written down. Literally.
The sore hands - as I explained on stories seems to be down to me being hypermobile. Turns out what was pretty cool and helpful in terms of flexibility as a child is pretty painful and at times debilitating as an adult.
Officially I was told it was joint hypermobility syndrome. But there seems to be a lot of debate on how connective tissue disorders are named and classified.
Since I’ve been told, most people have congratulated me ‘that’s great’ - I’m not sure why. Presumably because no one really knows what it is- so that means it’s not that bad. Honestly I’m not sure if it’s good or not. Im glad it appears not to be progressive, more of a wax and wane kind of thing. However; the literature is also not overly promising. I don’t believe I have a complete diagnosis yet- seems I meet most of the criteria for Ehlers Danlos III - some rheumatologists classicist JHS JHeds- aka one and the same. Others regard it as a spectrum disorder. It is not just joint pain though. Lots of bits and bobs that have always been wrong or ‘weird’/‘off’/‘Inexplicable’ have suddenly all been explained.
The only problem is- I’m still in a lot of pain only because it’s not commonly diagnosed or an area with mass interest I’m now left again to carve my own path, fight for myself and work out what to do next. I had a bit of time out but now I’m ready to see what I have to do to get over chronic pain, fatigue, digestive issues, etc etc - but mostly the pain!!! Considerations;
I don’t tolerate NSAIDS so I’ve been prescribed a different anti inflammatory drug (not commonly used due to increased risk of heart failure 🤣) to try.
Back to good old amitriptyline possibly
Physio/OT/Lifestyle changes - such as using my phone a LOT less (hence the point of the post)
I’ve been using a paraffin wax bath courtesy of my mum- it relieves pain temporarily - but long enough to get stuff done! It’s @homedics and was on offer on @amazon for £20 so if you have hand or foot pain deffo consider it!
If anyone has any experience of managing with similar cont in comments