How does your rheumatologist/GP respond to your pain?

I was diagnosed with RA nearly 3 years ago. Since starting methotrexate, my swelling has hugely reduced but I still suffer with morning stiffness and varying levels of pain. (As it happens, I'm on prednisolone now and about to start leflunomide, so hopefully things will start looking up.) Upon examination last week, my rheumatologist told me that because my joints were not swollen and because I'm "always tender and rarely present with swelling" it's likely I have Fibromyalgia too. I felt fobbed off because I 'only' (haha!) get pain in my affected RA joints and I don't have any other Fibromyalgia symptoms. It felt like she was diagnosing me because she doesn't know what to make of my pain rather than her genuinely believing I have this syndrome. I've noticed that both the rheumatologists I've seen tended to brush over my pain issues and only look at the clinical picture (bloods, scans and visible swelling upon examination). This led me to wonder how other people feel their doctors deal with their pain and how they respond to them.

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  • I've only seen one rheumatologist 3 times in all so have limited experience having only been diagnosed in November. He appears to look beyond the bloods at least. He does make it clear that he looks for visible swellling and redness first and foremost and I've had very little of these to date - but obviously enough for him to make a diagnosis. To me this seems fair enough to an extent because I know of many consultants who only go by blood and x-rays so at least mine looks for symptoms. But when my ESR has been consistently high he has told me that this is of secondary importance compared to visible swelling and my description of pain. This has made me wonder where my inflammation is and whether it's a question of some people having inflammation that's clearly visible where for others, such as myself, it's more systemic or underlying. I find this a bit worrying. But I've had very little pain since the MTX and hydroxichloraquine kicked in and so I guess I don't need to worry even when my ESR is high.

    If I had a lot of pain or tenderness but was told that my blood results and what the consultant could see indicated that it wasn't RA but was probably Fibro I would feel fobbed off too. I think these doctors sometimes forget that we might have done our research quite extensively and know as much if not more about what to look for than they do?

    Re dodgy doctor decisions my sons both had broken wrists (not both at once though!) that went undiagnosed for a while - one for a month. In once case eve the class teacher, a first aider, was sure it was broken but both GP and hospital registrar dismissed this on the grounds of "no swelling no fracture". It turned out, once finally x-rayed 4 weeks later, that he had sustained a full break!

    Also my friend was rushed to hospital a few months ago with no sensation in her lower body having had terrible back problems. This was dismissed by the registrar as being just a trapped nerve. Luckily she couldn't get home so he had to admit her for the night so she was given an MRI and it turned out to be a neurological emergency! If she hadn't been operated on that same day she would be in a wheelchair and completely incontinent. My faith in doctors is not that great so I tend to push them and question them until I'm reasonably satisfied. This probably drives my GP nuts but I don't care - he's paid enough after all! Tilda x

  • Its really funny that in medical literature ESR isn't considered a reliable way of measuring inflammation in most people and for most diseases (its only reliable as a diagnostic tool for PMR and giant cell arteritis), and yet doctors seem to rely on it so much. If you happen to be one of the many folk who don't show high ESR with inflammation, then its really easy to get fobbed off with the fibromyalgia or "chronic pain syndrome" thing - even when you clearly don't have the kind of symptom picture that fits with fibro.

    I know pain management isn't really part of rheumatology, so I wouldn't necessarily expect my rheumatologist to prescribe appropriately for that. I have a pretty good GP for pain management and so far am getting enough help from them. If it got beyond what they could do I wouldn't hesitate to ask for a referral to a pain clinic or pain specialist though. The advantage of pain clinics is that they can sometimes offer other kinds of treatment than pills (including injections into appropriate joints, etc).

    Tilda, I'm with you on the need to question doctors. I also know the consequences of having neuro emergencies left untreated - I had an episode a number of years ago where I had extreme lower back pain and lower back muscle spasm and was complaining of bladder emptying problems. No MRI, no treatment, and no proper examination, even though I did end up admitted to a medical ward. I am now left with permanent difficulties in bladder control (requiring intermittent catheterisation) and permanent gait abnormalities, though thankfully I can still walk (though with crutches). I was also off work for about 4 years while I recovered. I had all the "red flags" but just didn't get treated properly.

  • Meant to add that if you are lucky enough to show strong ESR changes then it definitely makes monitoring inflammation a whole lot easier.

  • I agree with you about ESR Earthwitch - I feel lucky in this regard although I do often wonder why it's high when everything feels normal in my body. I did some research and one person's normal is another person's high. If you have an underlying inflammatory condition your 'normal' level may well be different to normal peoples!

    That's terrible about your own neuro emergency (cauda equina?). Did you make a complaint or get compensation? There are a few instances of people taking their doctors to court that I would actually support fully although I know the medical profession can make mistakes and we need to be rational about this and not become a litigative society like the States - but this one seems to me to be unforgivable because of the consequences. Tilda x

  • Thanks for sharing your thoughts and interesting discussion on ESR. My rheumatology clinic do not test ESR and say that the CRP test is far more accurate. However, my GP arranges blood tests and does test it. My ESR is always elevated (it does go up and down) and my clinic completely disregard this test.

  • I have no complaints with my rheumatologist, he's brilliant and always hears and listens to what I say and tries so hard to help me with my pain.

    all the best

  • For me it's my GP and not the Specialists, as I am required to have blood tests every two months now, the GP wanted to remove the CRP & ESR ratings from the tests. Through this I am continuing to have the tests completed at the hospital rather than the surgery. I believe if the consultant wants all the tests completed he should receive them. As to pain each time I visit both I am always asked what the threshold is at, if in the 8-10, hospital give injection, if it's with the GP, gives me stronger pain killers. All in all have no complaints with what I have received, feel I am one of the lucky ones, compared to some of the comments on this site.

  • My GP isn't keen on the CRP for some reason but has been required to take it just before I see my consultant. He says he doesn't see how it's nearly as relevant for RA - he takes the ESR every month now but I think it's just because I asked him to. My CRP has only ever been at around 30 at heighest and more recently been at about 14 when it was taken last June. My ESR generally hovers between 62 and 50 although sometimes comes down to about 34 every few months. I'm told by rheumy and GP that I shouldn't read too much into it but then I'm not sure why they bother taking it at all if it's so meaningless!? I think I have an excellent rheumy and a great GP for the most part - if I'm cynical it's about doctors in general not about my own. TT

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