I don't know anyone who has ever even heard of palindromic rheumatism. People hear arthritis and think it's just a few 'achy joints'. PR flits all over your body indiscriminately and I find it really difficult to cope. I'm in such pain. I can't sleep properly. My life is really on hold since I was diagnosed with this shortly after having my first child.
It took a while for doctors to take me seriously and I basically had to Google and tell them what I thought I had, which was late confirmed by blood tests and eventually seeing the rheumatologist (he is brilliant)
I was put on hydroxicholriquine about a year after being diagnosed which seemed to work well but it's just completely stopped working. I've been flaring since November and it's the worst ever. I feel like I'm going to go mad. I wake up each day not knowing which part of my body will be sore. I can't sleep at night with pain. I'm a walking zombie during the day because of this. To top it all off, I'm a teacher and have an EXTREMELY difficult class this year, worst I've ever had and I really feel a bad day with the class is making my pain levels worse. This may all be coincidence though.
I feel I can't carry out the intensive written part of my job effectively since some days I can't even hold a pen, can't lift my arm to use the whiteboard and find organising art activities, PE equipment unbearable.
I went to the doctor last week to ask to be referred sooner than my usual 6 months to the rheumatologist as I'm so down with the pain, I'm in a really dark place. I asked for some stronger painkillers as naproxen don't even touch the sides if the pain. She gave me cocodamol. I'm not sure these are even helping at all.
Please can someone reply to me and help me feel I'm not alone.
I'm only 36, I feel too young to have a lifetime of this level of pain.
Sorry this is such a self indulgent post. So sorry for that.