Case study: Patricia Barnes
Patricia wants to help patients and medical professionals become more aware of RA symptoms to enable early diagnosis.
Diagnosed with rheumatoid arthritis in April 2013
Simple tasks that become impossible because of rheumatic conditions:
1. Making the bed
3. Cleaning and general household duties
Patricia had started to feel unwell last year with aches and pains, severe fatigue and feeling weepy. “I put this down to change in weather, age creeping up, and as I have an underactive thyroid, thyroid problems.“ However, Patricia gradually found her mobility in her arms being severely restricted, extremely painful and she also had a poor grip. “I thought perhaps I had frozen shoulder or carpal syndrome even though it was in both arms. I had never considered rheumatoid arthritis (dare I say I knew very little about this autoimmune disease) because I always associated this with nodules, arthritic hands, severe disability.”
“I went to the doctor and jokingly asked him to sort out my hands as I needed to get my turkey out of the oven without dropping it.” The doctor prescribed diclofenic and sent her for blood tests. When she returned early January for the results she was told she would be referred to a rheumatologist.
“In the meantime I attended A&E at Kings College because I was so unwell and was immediately given steroids and further painkillers to alleviate my discomfort.” It was while at A&E that Patricia was advised to chase the hospital for an urgent appointment. However, when she contacted Guy’s they informed her that the referral had been sent to MCATS not rheumatology and so had once again been sent back to her doctor, because it should have been sent directly to rheumatology.
Patricia was eventually seen by a rheumatologist at the end of April and diagnosed with rheumatoid arthritis (RA). “I feel this appointment could have been at a much later date had I not had the resources, internet and knowledge to chase this myself. (I think the poor rheumatology administrator was fed up with my tearful phone calls and booked me in for the earliest appointment).” Patricia feels now that, even though she is not currently in remission, she is heading in the right direction and now has a lot more understanding of R.A thanks to the leaflets information and staff at Guy’s.
Living with a rheumatic condition
Patricia has found that her condition has changed her life. She feels unable to make plans because she does not know how she will feel on a day-to-day basis. “My daughter is getting married and I was not able to go to her dress fitting or attend wedding fairs with her. The constant pain, it is a nagging pain; like a boil but it is not going to burst so it doesn’t stop. It does get you down.”
Patricia has found that carrying out simple tasks such as housework very difficult as a result of having RA “Some days I am unable to lift and carry as much (thankfully we now have internet shopping) and I find general housework duties considerably restricted due to severe fatigue and pain. It is a constant struggle to do mundane jobs when I have a flare episode. On one occasion, my friend’s grandson ran to me to be picked up and it was too painful to raise him.”
Patricia’s window of opportunity
Patricia feels strongly that early diagnosis is essential and would enable future sufferers to have a pain free quality of life. She also believes that there is not enough information out there for patients and doctors to be aware of early symptoms and referral procedures would now like to help patients and medical professionals become more aware of RA symptoms and referral procedures to enable early diagnosis.
“I have had excellent care from my rheumatology team. I am not in remission yet but I will be soon hopefully. I am extremely lucky because with Laura, the rheumatology nurse, my two daughters and a caring husband, I have much-needed help and support. My friends have noticed a change and say ‘Pat is back!’”
*If you are inspired by Patricia’s story, visit the "Take Action" section to learn about your window of opportunity to help.