Subject: Still no diagnosis, don't know where to turn
I'm not really sure where to start. I'm 25 and have had various joint pains since I was 14... my dad, his mother, brother and sisters all have joint pains/rheumatoid arthritis/osteoarthritis.
The pains started in my hands/wrists and ankles and have slowly increased to my knees, hip, shoulders, neck and back. I'm pretty clumsy and have had lots of injuries/sprains etc so have had lots of physio. I still go to a private physio every 3-4 weeks to try and help the pain. My wrists are particularly bad at the moment - feels like someone is squeezing them and there's stabbing pain going through my fingers. I've been tested for carpal tunnel syndrome in the past but it was negative.
I've basically been struggling along on a high dose of ibuprofen for the past 4 years. Various doctors and consultants have fobbed me off, saying I'm too young to have problems, my tests are normal or I don't have any swelling.
In February I became ill, with severe abdominal pain and various other symptoms which my GP tried curing with several different antibiotics and I ended up in hospital for. The doctors don't seem to have a clue what's wrong with me (originally thought kidney infection) so I am still undergoing tests. At the moment they're investigating inflammation in my bowel.
Anyway, my current consultant (a gastroenterologist) was shocked I'd been on ibuprofen for so long and immediately took me off it. I'm not allowed any other NSAIDs and paracetamol and co-codamol have no effect on me. I'm taking tramadol for the abdominal pain, but it has no effect on my joints. They have gotten dramatically worse to the point I can barely walk some days without crutches.
I finally got referred to a rheumatologist last week and was really hoping he'd have some suggestions. But he didn't. The attitude seemed to be "well you can walk, your blood is normal and you're not all red and swollen so you must be fine." He said I 'would' develop RA but didn't have it yet. Then he said I should go back to my GP and ask for painkillers!! What does he think I've been doing for 11 years?!
So now I'm completely stuck and feeling really low. Nobody seems to realise just how much pain I'm in. I have an allergy to colourings so am severely restricted in what medications I can take, and the ones I'm on aren't helping.
I don't know what to do.