RA lack of swelling

Just wondering if anyone else has has similar experiences to me...

I was diagnosed with hypothyroidism in 2008 and psoriatic arthritis (later re-diagnosed as rheumatoid arthritis) in 2013. I have been on triple DMARD therapy for a few years now along with amitryptyline and etoricoxib ( prescription anti inflammatory) which I resumed taking prior to Christmas. I'm a nurse and have been off of work for severe shoulder pain and multiple joint flare ups for almost 3 months. My shoulder was misdiagnosed as frozen shoulder but i saw a private physio (who unlike the a&e Drs) examined my shoulder and found the joint to be incredibly inflamed as well as evidence of impingement. Anyway I've seen by rheumatologist today, I explained that I had been having regular pain and stiffness in my hands and feet as well as pain in my wrists, knees and elbows (elbow pain is new). Since my first diagnosis (seronegative RA) my esr and crp (inflammatory markers) have been normal and that my pain is rarely accompanied by visible swelling. To my complete shock she turns around and suggests to me that my rheumatoid diagnosis may be incorrect (my original hospital failed to forward my medical notes when I transferred to my current rheumatologist two years ago) and that because she hasn't seen swelling in my joints that the original presence of rheumatoid factor in my blood could have been a false negative because I no longer present with rheumatoid factor. I've woken to my previous rheumatologist's secretary who is going to get my notes transferred but I'm at a bit of a loss. She is now suggesting I might not have arthritis but that I have chronic pain syndrome instead, she's running tests to confirm a diagnosis but since I'm taking so many drugs I wonder if that will skew the results, she also won't give me any information about chronic pain or what might happen next so I'm stressing out. What she doesn't realise is that although my symptoms weren't 100% straight forward when I was diagnosed (the joints in my upper fingers and both thumbs were what confused my consultant I think because that's not typical of RA) I did present with 14 swollen and tender joints with pain and stiffness in the morning. Ultrasounds have shown evidence of RA in my toes but never my knees and wrists which are usually the worst for pain. Since I've been on treatment my joints never appear swollen and even when I've had severe pain and tenderness just before an appointment my consultant doesn't count this she only documents and goes on how my joints present during my infrequent appointments. Hope this puts things in context. What I'm really wondering is of anyone else has had similar experiences, I.e lack of inflammation, normal inflammatory blood makers, had their diagnosis disputed, been told their problems are not rheumatoid or ever been referred to a pain specialist? I've got to wait another 5 weeks for an appointment, in the meantime I'm having an ultrasound of my wrists and shoulders - but only my feet have ever presented with rheumatoid activity so I'm doubtful they will do anything to confirm a rheumatoid diagnosis. I want to be positive at the prospect of not having RA but I doing think chronic pain is necessarily a better diagnosis it's taken less seriously at any rate. I'd be grateful for anyone's thoughts on this. Thanks

2 Replies

I can't give you medical advice. This can be a very difficult condition to diagnose. I can only wish that you find a solution very soon. Being in constant pain is so draining, but I hope you can stay positive and keep going. You are not alone. Have you tried the NRAS helpline? They are very patient, understanding and a font of knowledge. All the very best.

1 like

If you go through the posts on this forum you will find several other people who have had the original diagnosis queried or over-turned. In a way this is good that doctors are not just continuing in the same mind set putting everything down to RD but querying the symptoms and signs.

Unfortunately, the diagnosis of RD is not straightforward. I know I have been told in the past that I don't have RD, then I pop up again with classic symmetrical swollen red joints in my hands and wrists and hey presto, the diagnosis is re-instated. Now I take photos of my joints when they flare as they often do this when I don't have a appointment to see anyone for months.

Keep a record of your symptoms and a photographic record of your signs if possible. The pattern helps the medics to understand better what is happening - blood tests are not always helpful!

1 like

You may also like...