Newbie

Woodles

Hi, I’m Woo 👋

So it appears I have PsA and Hughes Syndrome. I had psoriasis skin lesions as a child but they mainly gone (odd patches on elbows when stressed to the max 🤪). I have had about 15 surgeries on various joints and many, many spinal procedures over the years but PsA was never considered a cause as I do/did have a spinal deformity requiring a few fusions. I’ve had thumb joints fused, ganglions removed etc etc, and so the picture builds 🤔

Over the last 12mths I’ve had 2 episodes of what the GP assumed was a reactive arthritis but on this 3rd episode (started Jan/Feb) we bounced into action and I’ve seen 2 Rheumatologists who agree it’s “almost certainly PsA, possibly palindromic arthritis, but 99% sure it’s PsA”. I’m seeing again on 14th as things are getting worse fast. Two fingers are bending, lumps are appearing in my hands, Achilles pain and dreadful heel pain plus hip pain that literally floored me. All exploded in the last 6wks.I’m going to beg for treatment when I next see the Rheumatologist.

Yesterday I had sudden blurred vision in one eye. The fab Facebook page members all advised A&E. after a chat with Rheumatology I was dashed over for bloods and exam. So far it’s remained blurry and my eye is achy but unless it worsens, a quick scan on Monday/Tuesday should bring more answers. Clearly connected though.

Oh it is such fun isn’t it? 😬🙁

I am a school nurse but gave been off since February with no return date in sight. I suggested OccHealth and as luck would have it was assessed by a retired Rheumatologist who worked with Dr Hughes at St Thomas’s! Handy as he supports the diagnosis and understood completely.

Despite his clear and sensible report, work are still making me feel guilty and are asking ridiculous questions that I so wish I could answer, but at this stage, simply can’t. They seem to think that I’ll see the Rheumatologist in a couple of weeks and he’ll start a magic cure in time for the new school term 3days later..

The stress they’re causing is only making me feel even worse 😫

This aside, I’m a happy go lucky wife to my childhood sweetheart (we met as bumps!!), two children and two adorable Cocker Spaniels. I like to dabble with art and have always got knitting on the go (not today, I can’t see it well enough 🥺). I used to love to sail and ski but I’ll just smile at the memories instead now…

A long introduction, apologies!!

I am delighted to have been guided to you, I’d be literally lost at sea without the info available here, so thank you.

Hope to chat soon,

Woo x

Peppercorn

Hello Woo, I’m a newbie too. I’m so sorry that you’re suffering, you sound so brave and resilient. I’m one hip replacement down, one to go, now facing OA in my knees as well, and I’m not even forty. I’m a bit of a sad, slumpy thing at the moment and hoping to talk to others in the same boat. Hopefully speak soon…