Thursday, July 02, 2009 bumpy asks

Q: at the age of 29 i got my first nodule in my right heel

since then i have had it removed 3 times each time it gets bigger. when they have done a biopsy they said they were rheumotoid. but my gp has just done blood tests and he says they are normal. i have now got another nodule coming in the other foot and several of my toe joints are swelling. if i hav,nt got ra why do i keep getting rheumotoid nodules

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Answers (1)

Lene Andersen, Health Guide

7/ 3/09 12:46pm

I don't know a lot about nodules I don't know if it's possible to get rhumatoid nodules without having arthritis, but I'm going to comment on a couple of other things in your question. Approximately 20% of people with RA are what's called seronegative - this means that their blood tests don't show RA (for more on blood tests and what they mean, click here). The test are generally used to confirm a diagnosis, not as a deciding factor in the diagnosis. I would recommend you go back to see your doctor and insist on a referral to a rheumatologist to get checked out by a specialist.

bumpy

7/ 6/09 4:47am

hi lene

thankyou for answering my question. i will try and give you a bit more imformation. for the past 18 months they have said i have been suffering with fybromyalgia and chronic fatique syndrome. i ache all over really and im so tired i go back to bed most mornings thats if i manage to wake up to get the children of to school. i have just been diagnosed with degeneration of the lower lumbar. A couple of disks have slipped and are pressing on my main nerve so im awaiting a opperation. the blood tests i have just had done where my gp said hey were normal for ra came back with a high hb count so i have got to repeat them in a few weeks. as i said in my previous email i am now getting another nodule in my other foot and several of my toes are swelling around the joint both my big toes are starting to bend towards my other toes from the middle and i have got a lump with some swelling to the knee. i have asked to be referred to a specialist this is where the blood test came in and in his opionion with it being normal i don,t need to be referred.could you please give me some advice wot to do next

Lene Andersen, Health Guide

7/ 6/09 10:42am

Get another doctor. I'm sorry to be so blunt, but if your doctor is not giving you the kind of care you need, he is not a good doctor for you.

From what you described about your earlier symptoms, the diagnosis of fibromyalgia and chronic fatigue syndrome could be reasonable one - we have a fibromyalgia area in our chronic pain site and you may want to check it out to see how it fits you. However, the rheumatic nodules, the deformities starting in your joints (your toes) and the swelling in your knee are not consistent with fibromyalgia. Joint damage doesn't happen with fibromyalgia, it happens with arthritis and the symptoms you describe should warrant a referral to a rheumatologist even if it's just to cover all the bases and/or cover his rear end. Some doctors rely exclusively on blood tests to show evidence of RA before they will refer or treat and it's an indication of lack of knowledge. Which is okay, as a GP can't be expected to know the ins and outs of all diseases, but in this particular case, it's leaving you in a situation where if you do have RA, you risk permanent damage to joints because your doctor won't do anything. You may consider printing out the article on blood tests I linked to earlier and highlighting the part about how 20 to 30% of people with RA are seronegative or advocating for yourself and asking him for referral despite his belief that you don't have RA. If he continues to refuse, that's the point where you go somewhere else. By the way, if you're seeing an orthopedic surgeon for your back problem, you may also try to talk to that doctor about this. An orthopedic surgeon will be able to recognize RA deformities and you may be able to get a referral to a good rheumatologist that way. Sometimes, it's about thinking outside the box and working the system - if one doctor won't take your symptoms seriously, maybe another one well.

Unfortunately, RA can be hard to pin down in the beginning, presenting as other things (e.g., fibromyalgia) and many people end up going from doctor to doctor for quite some time before they get a diagnosis. It's a very rough introduction to self advocacy, but keep listening to your instincts and the messages your body sends you and trust yourself. If you think there's more to it, there probably is, so keep pushing.

Q: at the age of 29 i got my first nodule in my right heel

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