DAS Score?

Just had appt with rheumy nurse and was asked again what did I think my level of pain and stiffness etc was out of 100. As usual I found it very difficult to give a number. Does anyone else find this so? I'm always convinced that I've given the wrong number, too low or too high. What did I say last time? Will she think my score is not the same as she would give?

Anyone else have similar thoughts?

10 Replies

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  • Hi Chappy, I do so agree with you, last Thursday, I had to do the same, and find it nigh on impossible to give pain levels a number! With RA something, somewhere always is painful, I find, so living with constant daily pain of some sort over a long period of time almost becomes normal. I have no idea what is high or low, and usually pluck a number out of the air, and just hope it's not taken into account too much. Just hope your pain is being managed, as to be honest that is the main thing. Take lots of care, Jennyxx

  • Hi Chappy,

    I've just joined this community... so forgive me if I'm just barging in!

    I agree it is very difficult to give a number when asked about pain levels etc.. as it's such a subjective thing!..

    I also think that when we live with constant pain we become, to some degree accustomed to quite high levels of pain, so what might be a pain level 9 to one person... we might register as a 6, as we are comparing it to our own acute episodes of inflammatory/ joint pain... (usually I'm only asked for a number between 1- 10?)

    When my rheummy nurse does the DAS assessment & scoring I ask her what the results are so I have an idea of my disease activity too!..

    Dorcas x

  • Hi again Chappy,

    I forgot to say, that I usually say between 40 - 60, but I've had times when my nurse has said it's ok to say 100! Make of that what you will. The most important thing ( for me) is to discuss how I'm feeling, numbers are just a small guide. Wishing everyone pain free days. Jennyxxxxxx

  • I get asked this by my doctor, the nurse and the consultant each time

    I see any of them, it appears to be a standard question along with, hold

    out your hands!!!

    I feel like screaming, why my hands all the time? what about my legs, feet,

    arms, shoulders etc etc.

    I once asked about my feet only to be told, we do not do feet, excuse me!!

    One knee is set solid and I am in pain, I had the injection which normally

    works, for some reason this time it has not.

    I went to see my GP this week and he near enough told me, you have got

    RA there is little we can do.

    As for my shoulder and arm pain book to se the physio, I tried, next appointment

    in July!! I 'hope' it still hurts then or there is no point going (:(

  • Had to reply to this feed as I too want to scream at them - my ankles, feet and jaw hurt so much that I cant walk properly and cant open my mouth wide enough to eat things like apples (without cutting it up first) - yet this is not considered in the initial DAS scores.

    However my nurse specialist said the hands/shoulders gives them a way of standardising. They then look at the blood results and add that to the equation and then the important question how are you feeling 1-100.... he said this question is where I include my feet, mobility, fatigue, emotional well being and my jaw etc.

    As fizzy said in a later reply - this question is subjective and must be based not just on the day of the clinic but on how you, personally, have been coping over the past few weeks, so although a very difficult question, an essential one that we consider before we go.

    Following answering this question with a 70 they placed my DAS as 3.68 which my nurse said was good ... and with that they are increasing my methotrexate up again (now to 25mg) and stopping my Prednisolone.... so Im waiting for the pins and needles and permanent nettle rash sensations to return in my hands/arms once more :-(

    Tina

  • Thanks for your answers. I now know I'm not the only one who finds it difficult to answer the DAS question.

    Carolyn x

  • i find the question of 0-100 rating extremely difficult.

    I treat critically ill patients as part of my job, and I rate them as 100 (being the worst ever), so I can't rate myself anywhere near that. But I was advised at my last rheum appointment to rate it for myself, not considering others. and in ordfer to get a DAS score high enough to be assessed for anti TNF I ended up rating myself as a 70....which is a pretty over generous!!

    Its a subjective thing, so its gonna vary a lot!!

    I would say don't be shy in over stressing your problems, and consider emotional and personal well being as well as physical issues...good luck x

  • I have now had two DAS appointments and I have to put a mark on a straight line to indicate where I think I am pain/mobility wise. One end of the line says 'good' and the other end 'bad'. My nurse then takes out a ruler, measures the mark on the line, does some kind of calculation and hey presto - I get a DAS. They do check my bloods and joints for swollen/tender - how many hurt when they pinch then - ouch! Putting my 'score' in to something visual is manageable. I don't think I could think of a number either.

    I am amazed there are different ways of assessing DAS.

  • l give the daz score 8 how much pain ,yet the bloods say RA is stable, well why do l feel in pain, lv had RA longer enought to know what is RA pain and what is'nt, think its about time anew method was though of

  • This good, bad line out of a 100 is so difficult because I have just been told it is not a pain, fatigue line, it's based on active swollen joints. Which means I have probably been filling it out wrong, hence why I end up with a high DAS score each time. I am so confused.....

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