I finally got to see a rheumatologist a few weeks ago but was a bit unfortunate in that after a few bouts of being quite unwell I was actually in good form on the day. Sadly this meant that blood tests done on the day were normal except C reactive protein and drvvt. Since then however the near constant running nose, joint pain, odd muscle pain, arms feeling ice cold when warm and now a mixed white lumpy itchy + red pinprick rash have started to return. In fact I was screaming out in pain from spasms in my feet and started to be unable to walk without pain one day.
I’m frustrated because the letter to my GP missed significant points such as stating I didn’t have joint stiffness which is not true and in fact I explained it’s presence in my fingers.
What can I do to ensure I’m listened to - given I can’t help if on the day I wasn’t having a flare and yet now am having the beginnings of one (does not being able to hold a pen and write without pains in fingers and wrists count?)
I have been given the number of a nurse specialist but don’t know if to call her?
It’s frustrating as I want an accurate diagnosis so I can get on with my life but the consultant’s letter has left me feeling sad and not taken seriously just because on the day blood tests were ok.