Spoonie Update #2

It's been a little while since I last did a Spoonie Update blog post as nothing hugely major has happened since I last updated you, I've had lots of little things happen though so I've waited until now to talk about them all.

Last time I checked in with you I had just had my first appointment with a new rheumatologist, I suggest you catch up with that post before you read this! She referred me to several different people including 2 OTs (occupational therapists), so far I've seen my hand therapy one and I'm due to see the rehab one at the end of the month. I've only had one appointment with my hand therapy OT so far so things are still very early days and trial and error in regards to trying to relieve the pain I'm having in my hand and wrists. I've been given some exercises to do to try and strengthen the smaller muscles in my hands as the bigger ones are fine but it's the little ones that are not working and thus preventing me from having full function. I've also been trying out some compression gloves whilst typing to see if that makes a difference, so far I can't say they've helped but as I said before it is all very trial and error right now.

Since then my wrist pain has got worse so I've been using a wrist support on my right wrist which has been helping tons. My wrists are so hypermobile that my hands tend to sit very flopped down most of the time instead of held up which causes a lot of pain so the support has helped me a lot in relieving and preventing that pain.

The other thing that my rheumy referred me for was the 3 week in-patient rehab programme and after filling out several long questionnaires I've now got a date for my assessment, late May! I honestly thought I'd be waiting longer than that to have my assessment as it's a popular pain management programme so I'm happy to have a date so soon. We're now looking at probably end of Summer for when I actually do the programme if they think I'm suitable.

The most unexpected appointment letter I got through the post recently though was about seeing my spinal surgeon in June. It's a long and complicated story when it comes to my back but the short of it is that my spinal surgeon left me in a lot of pain after my surgeries and has basically done nothing about it. I'm looking into getting a second opinion but I'm willing to see him once more to see if he has any new ideas before I go through the long process of finding someone else. I'm staying positive and until then at least I'm still able to get out and about thanks to my wheelchair!

The only other new thing is that I started a new medication this week, Nortriptyline. I've already tried Amitriptyline and Gabapetin and didn't get on with either of them so this is the third option and so far things are going well. It might take a few weeks to feel the full benefits but for now it is at least helping me sleep! Fingers crossed next time I do an update post I can tell you some more good news about it. I'll also hopefully have some very exciting news to share with you but I can't say anything yet!


  1. I hope the new meds work well for you darling, I'm glad they're helping with your sleep, sending you big hugs and all my love as always xxx

    Zoe ♥ MammafulZo