Does your rheumatologist discuss your pain with you?

As the question says, I am curious. Apart from checking my joints for tenderness to calculate my DAS score, my pain is not really taken into consideration/discusses. My rheum clinic focuses on blood tests, visible swelling and the DAS score.

I'm not being critical. I think my rheum and the rheum nurses are absolutely fantastic but over the course of my time on social media forums, I have noticed that pain is not always address in rheumatology clinics. I was referred to pain management which I find very helpful but I find it interesting that pain is such a major feature of inflammatory arthritis, yet is not always addressed. Perhaps this is due to time constraints?

Amy thoughts?

11 Replies

  • My Rheumy does discuss it with me And I feel u can say to him look I have no swelling but the pain is awful! I took a pain diary to him a while back and he looked shocked at what I had written. They need reminding we are humans not numbers now and then, lol I think. So next visit be brave and tell him or hand him a pain diary ? XxxxA

  • I do bring up my pain. :) It's just that I feel it is considered less important in the hierarchy when assessing disease activity.

  • Hi crashdoll

    My rheumy takes note as i don't stop about it, every time i see him i tell him how much pain i'm in all the time, and now i have MRI to see whats going on with my back as i get hell of a lot of pain in my lower back and about 2/3rd the way up, along with the rest of the pain i get in my feet and hands, he up'ed my pain meds, but then saying that (he!) seems to think i'm not as bad this time not sure how he came to that, if anything i feel i'm in more pain now than i was the last time i seen him,

    he does the DAS score and asks me if it hurts and i say yes but as i don't jump each time or anything like that he seems to think its not hurting me, ( if only he knew what the pain was like!) << maybe he would understand how we feel & what we have to put up with.

    so to your Q its a No, as he only takes note when i keep on to him, if i don't i don't think he would do much about it.


  • I feel exactly the same as you crashdoll & think it's really just down to the Rheumy & how they prefer to work & treat I think. Yes there are time constraints, in my case anyhow but fear I'm not alone though surely if we only see a Rheumy twice a year at least half an hour could be expected to go through any problems or at least be comprehensively examined? They need to share info better too & not just treat us as another patient but that's another issue.

    My experience abroad was so completely different & the bloods & exams though necessary were not the be all & end all. I was questioned, answered & listened to all as a patient with a problematic condition which could vary from one appointment to the next as part of my treatment & found it a far better way & gave me more confidence in my Consultant. I was fortunate in that I had 3 monthly appointments which also helped but even if they were 6 monthly as with the NHS I would have been still been happy I'm sure. I was far better controlled than I've been in the last year & I put that down to being listened to & not just scored by bloods & tests. I'm convinced it also helped that my Consultant worked off the DAS44 score which included all my problematic areas which aren't considered or included in the DAS28, can't get my head round that one as it takes so little extra time & he concentrated on my problems rather than hands etc which although I have some problems with nowhere near as bad as my feet, ankles, hips, back & neck, all included in the higher DAS. He always paid particular attention to my neck problems as that can have very serious consequences if left unanswered. How can my Rheumy ever get a good over all impression if half of me isn't taken into consideration!! I normally have little visible swelling but do at the moment which tells me I'm not at all well controlled, how can I be when only part & not the whole is determined as to how the disease is progressing or not?

    Ooops ranted on, sorry that's unfair of me. I'm seeing my Rheumy this Friday & all this will be weedled into the conversation as I really need answers. If I'm referred to a pain management clinic, which hadn't occurred to me, she'd better duck as my words will hit hard lol! I know I can be well controlled on my meds & a little consideration in checking the most affected joints. This blip occurred by the SpR at my last appointment considering from the DAS28 & bloods & nothing else that I was in medically induced remission & 1 med being pulled & 1 only used when absolutely necessary. I've never had such a low score before & could have told him without the meds I certainly wouldn't be. No alternatives were offered as he felt I didn't need them! I feel I'm going to have a struggle to be listened to with my concerns as I think the answer will be that her hands are tied, but really do hope I'm proved wrong. :(

    These are my thoughts & sorry it's ended up a such a long answer & grumpy, but you did ask!!! ;)

    I do hope that you receive good care otherwise & it's just my hospitals way of running things.

  • If you think about it, pain is really a consequence of inadequately treated RD, so I guess the rheumatologists focus really is on treating the disease as best they can to help avoid pain, and not dealing with the pain as a pain issue, if you get what I mean.

  • That's a good way to look at it earth witch . You have a point there I think x

  • I agree. I got misdiagnosed with Fibromyalgia when really, my pain was solely down to RA and excessively low vitamin D. It was a source of frustration at the time,

  • I totally agree with you Crashdoll, they never really listen to you and are not really interested in your pain. It is a waste of time talking to our RA nurse in between appointments, as she can never answer any your questions.

    My own GP Dr says.... "Well you do get pain with RA!" But really wasn't interested and I wasn't whining about it. Last app she said double up dose of Gabapentin (600mg 3 x day) which sent me into a comatose foggy like state - so stopped higher dose as I couldn't function.

    My RA doctor says take paracetamol and rub gel on if that doesn't work try another gel! I do all they tell me to do swimming, walking, exercises and have a little ground peddle cycle, all of which give me pain during and after - but what do you do??

    I think I'm going to do as allanah mentioned, write my own pain diary and see if that helps.

  • Good suggestion from allanah. I also write a diary, not just for pain, more all things RD. I don't do it all the time any more as I was noticing repetitiveness so there was little point, but when something different occur it often helps piece things together. I do write it up religiously the fortnight leading up to my Rheumy appoints though as it gives a good overview of how I am each day for that.

  • Interestingly my Rheumy highly re comments paracetamol as prescribed. He says it the best painkiller! Obviously check with docs !!

  • I was initially quite offended that my rheum though my pain was so limited that paracetamol would help. However, regular doses can make a difference. They give IV paracetamol after big surgeries, so it has a role to play.

    I take co-codamol irregularly - as and when needed. However, I find that if I take paracetamol regularly, it keeps a constant amount in your blood and levels off the pain. It doesn't 'get rid' of pain but nothing does for me!

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