Dealing with Diagnosis
Hi all, just joined and looking for some friends to share stories and advice. Apologies for the length of my story:
I have just turned 29 years old, I have worked the last 12 years in the hospitality industry running around like a crazy person, incredibly active. Last year I took lockdown into my stride and got into the fittest shape I’ve ever been. My diet was fantastic, I even began inspiring others and built a following online.
When we had a short spell of returning to work after the first initial lockdown, I found it difficult to maintain my active 12 hour work days AND my fitness training, and started waking up with pins and needles in my hands and arms daily, then within weeks couldn’t even get myself out of bed. My partner would have to lift me off the couch and open bottles for me, open door handles, help me out if the bath. I was in agony.
With the current climate doctors and hospitals are of course beyond busy with no availability for walk in. After much persistence with my GP I was able to get them to do some blood tests. My grandma has arthritis and I felt it could be something similar. I had my bloods done, and they said “that’s it you can go” I said well what happens now? & the receptionist said “well no news is good news, if you don’t hear from us nothing is wrong” and no one ever contacted me. When I got back in touch with the doctors they said “your bloods came back normal, everything is fine” of course I knew it wasn’t. I kept on and on and the doctors and they prescribed me some pain killers, and eventually referred me to a rheumatologist.
Over a month passed and again I heard nothing. I then received a letter from the hospital saying that the rheumatologist had rejected my referral. I had to keep further on at my doctor before he tried again and FINALLY I was able to get a telephone call with a rheumatologist, weeks after.
The rheumatologist prescribed me some steroids (prednisolone) to trial for 3 weeks, booked me for X-rays on my hands, wrists and feet, and for further blood work. It was almost another month before I received a letter to book these appointments, which were on the 15th December (this was after someone on the phone directed me to the wrong hospital so I ended up in 2 places on the same day). I wasn’t having the best of luck.
The rheumatologist said she would check in with me in the new year after my steroids had finished (I finished them 6th jan this year) - I heard nothing. The prednisolone worked wonders for me and I felt almost “normal” again. 2 weeks later, having still heard nothing, I contacted them myself and they said I was on the waitlist for a call in February. By this point the stiffness and pain was returning. I asked for information on the X-rays and blood work I had in December as I’d still not received any results.
A couple more weeks passed and I received a letter with the results of my tests: “unremarkable” nothing wrong, again. They pushed my rheumatology call back further to March, which I received yesterday (3rd March).
This call was with a different rheumatologist who diagnosed me with “seronegative rheumatoid arthritis” - I had all the symptoms but none of the blood results to support it, negative rheumatoid factor, negative ccp, low inflammatory markers. But he said it was clear from the response to the other medications trialled that this is what it was.
In the space of that 5 minute phone call, everything changed. Big medication words and new information “disease modifying anti rheumatic drugs”, drug education clinics, treatment harmful if I planned to get pregnant, potential hair loss, high risk liver disease with alcohol, that it was rare at my age, I didn’t know how I felt.
I was directed to this site for further information, which has definitely helped a bit to give more information and a better understanding of this new long-term condition I was faced with & how I needed to adapt my lifestyle for the future.
I would love to hear how others dealt with their diagnosis? How has it affected them now? Have you had to change much in your lifestyle? I’m genuinely interested to hear your stories.
Thank you for taking the time to hear mine. X