Hello 👋 newly diagnosed with Palindromic rheumatism

FayeMck93

Hello

So my story to getting diagnosed is a draining one to say the least.

So I was a highly tuned swimmer, on my way to becoming a GB swimmer. Made the squad, dream came true. Thankfully I decided not to put my eggs in one basket and got a place a university to get a degree as a strong backup (thank god I did). I went and snapped my tendon in my food at the age of 18. So I was out of action for a long time. This is when my body went down hill. I put it down to the sudden stop in sports so thought nothing of it. When I got back to training I was finding it hard to grip the side of the pool which was very odd so I decided to work on my upper body strength. Cut a long story short the pain in my hands got worse and worse. Went to my gp and after explaining everything they referred me to another specialist. This so called "consultant' told me it was because of my mental health and weight I was in pain. My weight was perfect for my height and yes I was feeling low because sports was my world. I kept on at her asking for a test. She did it and when it came back I had inflammatory arthritis she then started being stroppy with me.

Fast forward, I then moved to another city for my studies. So naturally got a new Dr sent to the hopstial where I was told I was lying I have no arthritis. So flung myself back into high training keeping my weight low still struggling with simple things like gripping. I thought nothing of it until I had my son. After the birth I went to stand up and I fell to the ground. My hips had become that painful and sore my body couldn't take it. My new gp spoke to.me and she suggested it could be Palindromic rheumatism. I was reluctant to go see another specialist but she convinced me it was for the best. And now I've been informed why some weeks I'm fine but then next its like I've been injured all over again.

Feels weird having this diagnosis at such a young age and as a first time mum I feel embarrassed to speak to anyone about it. My husband is vedh supportive but I hate telling him when I'm struggling as in my mind I should be fit as a fiddle.

PeterJ

Hello @FayeMck93 and welcome to the community. We are a friendly and supportive group and I hope that you will find that as well.

I understand that you have been diagnosed with palindromic rheumatism and it is good that your husband is very supportive. It is good to have people around who will understand. Our website has a lot of information that can help and I would recommend having a look around it. To help I've put a couple of links in below.

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

https://www.versusarthritis.org/about-arthritis/your-experiences/hints-and-tips/

Please do keep posting and let us know how you are getting on and I am sure that others will connect with you to share their thoughts and experiences as well.

With very best wishes

Peter

Picasso99

Hey @FayeMck93 !

recently joined this forum and your message resonates with me a lot. Sorry to hear of what you’ve experienced.

How are you getting on at the moment?

I got diagnosed with palindromic rheumatism last year after about 13 yrs of back and forth and varying diagnoses. I also kickbox and did a half marathon then my knee went the following year and the fatigue kicks in so fast after intense workouts I can’t do them at the moment… I’m fit and healthy otherwise and not on meds but have taken a pretty strict lifestyle in terms of diet and trying to balance being active. It’s just a minefield and knowing it’s rare doesn’t leave me feeling supported by doctors or rheumatologists…

happy to chat more if you’d like. Hope you’re doing well,

Mel x