So no matter how swollen my joints my inflammatory makers are always normal. My consultant understands this. It is as it is and one look at me is enough to tell you, you can't rely on blood tests alone. However I find new GP's a nightmare. I had to phone for my blood results today to check whether I could start the oral steroids the consultant prescribed plus carry on with my methotrexate. The GP on the phone sounded confused why was I on any of these drugs and why had I been prescribed steroids. My bloods were all absolutely normal they show no signs of any disease of any kind. Had to explain that's because you hadn't done my anti ccp whichever would have shown and also my CRP is no reflection of my disease. He sounded dubious and then said he'd never heard of the fact that you could have serious inflammation but it not show up.
I feel I am always having to justify myself to everyone. I can be extremely ill (last two weeks severe nausea, swelling, fatigue) but I can see in people faces/voices I'm not believed because my bloods are normal.
Last week I went in to the rheumy nurse. My toes were unbearable and I could tell very swollen. She looked and said they were normal, no swelling yer hello I know what my toes look like normally and that isn't it. Consultant came in looked and said, oh they're swollen aren't they. Letter that's gone from the nurse to my GP..says toes normal no swelling FFS.
Yesterday saw OT. She thought I looked so ill she called the nurse. Nurse said I was a problem patient because I reacted to the meds they've tried and anywayI had chosen to go back on methought try it again so effectively my fault I'm ill. Actually consultant and the other nurse wouldn't let me take Lefludomide so I was left with no alternative as I wasn't offered anything else.
Occy health consultant signed me off work said I needed to get some control over my RA before I can come back. Went to first of a six week hospital run course today and made to feel by the health professionals there that I was giving in and playing on it as I just didn't want to go to work. It wasn't even my decision it was the occy health to sign me off. I felt like saying okay so would you be happy to work if you can't turn the steering wheel of your car, you are sick every five minutes and can't walk properly
Any of this sound familiar to anyone.....rant over