I have quite a few joints now that have either self-fused or are damaged in some way from when my RA was not well managed - ie I can't write with a pen for a long periods of time or easily get up and down onto the floor or lean because my right wrist is fused and my left wrist is also partially fused, I have swan neck fingers and damaged knees with limited bend. My right foot limps and I am putting off a foot & ankle fusion. I sound ancient but I am 41 with 7-yr old twins!
My RA is now well-managed but I seemed to have a lot of damage very quickly before it was stabilized and bits of this old damage (now secondary osteoarthritis) keep creeping up on me where the joint is extremely painful then tries to fuse itself but fails because I move it and then is extremely painful etc etc.
My consultant is lovely and really helpful with medication/chasing x-ray appointments etc but even he doesn't have any magic way of mending what has already happened. He just says I will need to have various levels of surgery as and when. I find it all quite depressing.
How do you all manage??!
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I use lots off different aids to help, you mention about writing some off my fingers are fused stiff so I too struggle to write I've used really big chubby pens but the one I find best is a ring pen search sigma pens online they sell a ring pen for just under £8 and it slides over your finger like a large loose ring so you can write without gripping or bending fingers
I also use the large cutlery so I can grip it better
I have to use splints for feet and wrists/ fingers/arms to help, I use strappings on my knees and ankles to support as they give way a lot.
I use a wheelchair to get about as my knees, hips ankles, feet and back just won't support me standing for long without immense pain or falling
I use a hostess trolley in the house or zimmer and I'm only 35
I basically use a gadget off some sort for everything I do, I'm even using the speech software Siri now so I don't have to hurt my fingers typing.
Do you have an occupational therapist, mine helped me loads in finding ways to manage better some could be funded and given by the NHS but some couldn't but they've allowed me to carry on so everything I've bought has been worthwhile
One off my best investments was the rise and recliner chairs I have one downstairs and one in my spare bedroom/ tv room ( for when I can't sleep at night) they've been so helpful on my knees,
If you need any help or advise with anything inpaticular please message me, and if I can help I will.
Julie thanks for your super quick reply and all the information. No I don't have an OT anymore - I did several years ago when my RA was active, I will ask again. I also make use of the speech software on my phone but don't have it for my laptop - such a good idea. Thank you again, best wishes.
Your so welcome x maybe ask to be referred as even though not active your RA has left damage x good luck and best wishes xx
I have nowhere near as much damage as you, only a couple of vertebrae that are now shot, my knees, little bits of damage on my feet and a couple of wonky knuckles. But I found advice from a good physio was really helpful as showed me how to maintain muscle tone round some of the damaged joints and that helps me manage. yesterday I was travelling in the car most of the day, and didn't do my stretches or much movement and today I'm seized up like anything... So as well as OT maybe ask whether there's a good physio who could look at you. Polly
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The visit with Orthpaedic Johnny!
How do you manage it all?
If they get the meds right do you still have pain and feel ill.
Is this the new normal for Rheumatology Physios
How do you guys manage a flare up?
