Joint pain

[laura14282]

This is the first time I have been brave enough to post! Really at my wits end though, so figured I would dive in! Have had severe joint pain since Jan this year. Have had it on and off since I was about 10 when my knees suddenly doubled in size one day. It's never been as bad as it is now though. My dr referred me to a rheumatologist but it's taking such a long time to get a diagnosis and treatment. I think the problem is, apart from that one occasion when I was 10, I have never had any swelling. I have every other symptom of Rheumatoid Arthritis...stiffness, especially while at rest and in the morning, pain in fingers, wrist, elbows, shoulders, hips, spine, knees, ankles and toes, dry eyes , flu-like feeling every morning and extreme fatigue. Getting to the end of my tether now, have been signed off work for months. Can anyone think of any illness that is the same as RA without the inflammation? My Rheumatologist just keeps taking blood!!!

Yeah could be psoriatic arthritis, sero-negative arthritis. Your rhuemy needs to x-ray or scan you, he should be asking about any history of arthritis in family and be making some kind of diagnosis by now.

When do you go again?

Tomorrow but I'm not holding my breath, all of the letters sent from her to my GP just keep banging on about the lack of swelling. My aunt has RA and my uncle has OA. She did ask about my family history. Apart from that the only things I have been asked were a 5 min conversation about my symptoms and a questionnaire I had to fill in about my ability to do things that didn't have answers relevant to my situation. The answers ranged from can do easily to cannot do at all. In my case it's more sometimes I can do it, sometimes I can't.

Have you had bloods done for your Rheumatoid factor, ANA, ESR and Anti RO and Anti LO. There is a whole host of immune mediated diseases that can cause your symptoms arthritis care list over 200. So you may not fit the RA category. When I was diagnosed with MCTD a friend who is GP described it as spinning the Rheumatology wheel of fortune for a diagnosis and then spinning it again for a treatment.
Diagnosis is often slow and often the main stay of treatment is pain relief. The best piece of advice I got from my rhuematologist was when I was having a flare was not to wait to be in pain to take the pain relief, but to take it at the recommended dose at the recommended interval every day to prevent pain 'wind-up'.

I had a load of bloods done 4 weeks ago, no idea what for but there was 8 vials worth. To get the results tomorrow. So far I've had ESR by my doc which was raised first time then normal the 2nd, then a CRP which was normal.

I haven't been given any pain relief so I take the maximum amount of paracetamol and ibuprofen. My doctor said the rheumatologist should be giving me injections with steroids so I will mention that tomorrow.

It's like a vicious circle. If I rest I am sore and stiffen up but the more I move the worse the pain is when I do have to rest. If I try to keep active all day I am up all night with hip,ankle and hand pain. If I do nothing all day I am stiff and sore but it's slightly more bearable.

I wouldn't rush to steriod injections. I had one last week and the first 48 hours was awful and I don't appear to be getting any long term relief 7 days later and the pains are restarting.

Oh was going to say arthritis care has some great info on it. I would ask lots of questions about what blood samples they took, what they test for, which results are abnormal and what does that mean. I am an 'expert' patient now and know far more about my bloods and what they mean than the GP.

Also ask for the anti-ccp test which is the specific test for RA.

All my blood tests, including the anti-ccp one were normal. ESR was raised again however. After much prodding and poking I got my diagnosis. Relapsing Polychondritis. Apparently I have a form of arthritis where my immune system is attacking my ligaments and that's why the swelling isn't visible. It's also why I wake up with sore ears and why I have a constantly inflamed nose! Not curable but they gave me the steroid injection and I'm starting a course of hydroxychloroquine. Hoping it helps.