I’ve been living with a somewhat undiagnosed inflammatory condition for three years. No R factor in my blood, all blood work is normal other than evidence of inflammation and the pain flits around my body - sometimes hourly causing me to quite suddenly lose power in a wrist, or a knee or a hip and then a few days later it’s back to normal and the pain starts somewhere else.
I’ve been under consultant care for 3 years now and on MTX for most of that time, dabbled with Sulphasalazine but it made me depressed to just back to MTX which was increased from 15mg to 20mg in January. I’ve had Bi-annual system steroid shots which have helped a bit.
My problem is the consultant has washed her hands of me. After my January appointment she sent a review appointment for October! She has said this disease is about learning to live with it and I’m now having flare ups monthly.
I feel I’m getting worse. The MTX increase hasn’t helped, if anything the flares are worse. I’m taking Naproxen every 6 hours when flaring and still can’t sleep for pain (so pain is an 8 or 9 on the scale not the usual jiggles and stiffness).
Can I fire my rheumatologist?? The trouble is there arent many around but I just feel my care is so light tough that she’s washing her hands of me and leaving me to rot.
In January I asked for nutrition advice and she muttered about there’s no cure but Mediterranean diets seem to help some people and that it’s not her area.
I feel neglected, forgotten and in excruciating pain more days than not and I don’t know what to do to help myself.
I am 43, have young children and work in a demanding job fulltime and I’m starting to really fear for the future.
Sorry to vent, I am clearly having a bad day/week/month..!