Four and a half years ago, I started going to see my GP every few weeks with a pain here, a pain there, swelling here and discomfort there. I finally saw a consultant who told me I had seronegative RA. 'Thank goodness!' I said - I thought I was crazy!
Combination therapy didn't really touch it, and a year later and more symptoms - I was on Anti-TNF - Cimzia.
A year later, and even more symptoms I was diagnosed with having Fibromyalgia - no cure, but anti-depressents help.
My condition is very up and down - my bloods are messy and although I can have a few days of 'good' I end up with months of 'yuk' days - there is no rhyme or reason and my symptoms don't match how I feel!
Yesterday I had an appointment with my Rheumy nurse - I have been have a rough time and I had made a decision to come off the cimzia as I hate needles (I can cope with the methoject!) and to be honest it didn't help.
After chatting about how I felt and how long I have been suffering (not as long as some, I know!) it turns out that I have Osteo-Arthritis in my fingers, but as to my other symptoms the nurse held her hands up and said 'I just don't know whats wrong with you? You seem to be hard to diagnose. I don't know what to suggest!' At which point - feeling like a lost cause - I cried.
I am physically and emotionally exhausted and hurt!
I have an appointment to see my Consultant next Thursday - but I feel my frustration may come out as I know I have not been fully informed of everything - even though I ask loads of questions, I record my good and bad days, and do everything I am told.
Has anyone else experienced this?
To be honest I am scared which is not helping I know - but also, just what to know whats going on.
Thank you for reading - hope the sunshine is helping you all x