Recently diagnosed and struggling
I just wanted to introduce myself and find out if anyone has any tips or experience to help me 🙏🏻
Apologies for the loooong post in advance 😂
My names Abbie I am 26 and have recently been diagnosed with “Sero negative RA’. It has been a very looong road to get here, but it’s nice to finally have a diagnosis and to hopefully manage and accept what I have... the later taking more time than I thought because everyone seems so shocked at the idea of me having RA at such a young age, their comments making me feel worse and thinking about what I’m going to be like a few years down the line... 🤦🏻♀️
For the past year I have been passed from pillar to post as nobody could quote work out what was wrong with me, as bloods came back fine but I had this persistent pain and swelling which started in my elbow and restricted my movements and daily life duties (I have a 2 year old so would find simple tasks such as getting him out of his cot etc... agony on a regular basis) After being sent for tests for suspected blood clots, MRI scans, to the orthopaedics department on the believe that I had an infection in my joint (which resulted in an operation to take tissue and fluids to test) all to come back negative. I was finally sent to the Rehumatologist, who got me sent for ultrasounds on my wrists and fingers, because in a short space of time the pain had spread to my fingers and wrists, I couldnt open doors properly or jars, had lost a lot of my strength, felt bruised, tired and achey all of the time!
My results showed built up synovial fluid and inflammation in the majority of my joints, which has now led to my recent diagnosis of Sero negative RA...
I have worked in the NHS for a number of years and I am based in the pharmacy... So the huge new medication list thrown at me was no surprise it just sucks 😔
My Rheumatologist seemed keen to start me on Methotrexate and prednisolone but we have been wanting to have another child so I knew the risks and opted for Sulfasalizine instead, but for the mean time alongside these 3 times a day and the steroids plus gastro meds I am currently taking about 12 tablets a day, I’m having awful side effects and feel really rubbish about the whole situation. I am a bigger girl already and one of the first things he said to me was about the weight gain from the steroids (which I already knew and dreaded).
My inflammation levels have gone from 40+ down to 18 already, and pain wise I feel better, not 100% but it’s sad to think I don’t think I’ll ever know what ‘normal’ feels like again, just good and better days 🙏🏻
I guess this post is to meet some new friends who have the same condition and problems as myself, think it’ll make me feel better knowing I’m not the only one in this boat 🚣♀️
Any advice would be much appreciated, also I would love to hear from any of you ladies who have had a little one? I’ve been told to expect a flare up once I’ve had the next one... 😔 Trying to do as much research into ‘trying to Concieve/pregnancy’ with RA as I can 🙏🏻
Thanks for taking the time to read my story!