Hi there, I am new to this but would like to share a bit of my journey that I have been on. I am 43 years old and a Registered Nurse. I live with my husband and two amazing children aged 12 and 14.
About 2 and a half weeks prior to Christmas I started waking up in the morning with pain and stiffness to my right side. The pain would subside throughout the day so I just put it down to sleeping in a strange position. According to my husband I have been known to do this. This went on for about a week with this intense pain to my right shoulder, inner elbow, middle finger and behind my knee and then it was starting to affect the soles of both my feet. I decided to go and see a GP about this as it was obviously not the sleeping position if the bottom of both my feet are affected. I had just changed my GP and she was not available that day so had to see another GP who had an available appointment and he just put it down to the position that I was sleeping in and stated that 10 days of pain was nothing major and prescribed some diclofenac tablets for twice a day. I did request some general blood tests which he obliged grudgingly. He texted me two days later to say that they were all normal.
I week later I made an appointment to see my new GP as the pain was starting in the middle of the night and I felt that I was an old woman trying get out of bed in the morning. Not only that, the pain and stiffness had spread to both my hands and wrists and I had a limp due to the right knee pain. I was struggling to do normal tasks such as getting dressed, squeezing the shampoo out of the bottle, washing and brushing my hair, holding a toothbrush and tying up my hair. One day I couldn’t even push out the Panadol from the tray and had to ask my daughter to do it for me so I learnt to open it prior to going to bed at night while I wasn’t sore and keep it next to the bed. Again the pain usually improved throughout the day and felt relatively normal in the evening and then it started all over again in the middle of the night.
This GP thankfully took me seriously, and while at my appointment she rang the hospital to ask for advice from the on-call Rheumatology Registrar. He advised her to prescribe some Celecoxib and request a different type of blood test. She also requested for me to have an urgent Rheumatology appointment but because it was Christmas Day in two days, the appointment was going to be weeks away. She also stood me down from work for two weeks to have time to heal. I felt very guilty about that as I did not feel sick and knew the others would be busy. Luckily a lot of the Nursing that I do is more case management these days so less physical on my body but still felt guilty as not everybody understood what I was going through and it probably just looked as though I wanted the Christmas and new year holiday period off.
After the first two days of taking the Celecoxib I felt some definite relief from the pain and then after that the pain returned. There were two days over the Public Holiday period where I was so sore that I didn’t want to move all day due to the pain. I felt like an old Grandma every time I got out of a chair. I did go back to work for one day prior to my next GP review but it was a total waste of time going there as was unable to do anything due to the pain and stiffness of my hands and wrists. It was also an effort to get up the stairs to the office.
I saw my GP the next day and she had to ring the Rheumatology Registrar again for advice. He suggested increasing the dose of celecoxib and have further bloods done. It was at this point that I finally lost the plot and burst into tears in front of her and my husband due to all of this unknown territory. She was very reassuring as so far all of my tests had come back normal. She stood me down from work again for another 10 days which then led into my annual leave which had been booked for months.
This was how things continued until my first Rheumatology appointment at the end of January. I had good days and bad. The pain continued and by then I had downloaded the hand exercises from the Arthritis Foundation website and found that if I did some of these prior to getting out of bed in the morning that it helped.
On the day of my Rheumatology appointment, I was so stressed that I became incredibly emotional prior to the appointment that my blood pressure was really high compared to my usual readings. I explained that this was just stress. Once the Rheumatologist called me to his office, I felt a sudden calmness that everything was going to be alright. After his examination he decided to put a steroid injection into my right shoulder and put me on Naproxen and Hydroxychloriquine. I had to have another set of bloods and then had to have X-rays of my hands and feet. Suddenly I was in the system – I was going to see a Nurse Specialist, Physiotherapist, Occupational Therapist and require monthly blood tests. Within a couple of days a lot of the pain had subsided and I could move a bit more freely. After a few weeks I was feeling much better, back to work and getting used to my new life. My visit to the Nurse Specialist is a whole different story on its own as I burst into tears when she kept referring to my inflammatory arthritis as a disease. I didn’t want to have a ‘disease’!
It is now 6 months on and it has been a real journey. I still have good days and bad days. I found that simple tasks can cause a big flare up if I take on too much or lift something that I shouldn’t. My husband and kids are forever telling me off for doing something that I shouldn’t do and they have had to adapt as well as I have had to get them to do a few more chores around the house to help out (well that’s my excuse anyway). The kids also had to get used to mum not being up to much over the summer holidays but hopefully next summer I will be in a much better shape. The trick is to not let it get you down and get on with life. I have had a couple of tearful moments but 90% of the time I am pretty positive and try not to feel sorry for myself. One of the advantages of being a Nurse is that there a plenty of people out there that are a million times worse off than me.