Painful Feet and ankles not included on the Das28 score?

I have pains in all the usual joints, ie fingers, wrists, shoulders, knees, but my feet and ankles have always been more painful than the other joints. Walking more than short distances is a real no no. I find myself compelled to hop from one foot to the other constantly when I'm standing on the spot having a conversation with someone. I feel sure that I'm not alone in this problem, so I'd like to hear your comments and stories. Also, I have been feeling confused as to why the Das 28 scoring does not include my feet and my Rheumy doctor never examines or asks how my feet are even when I offer to take my shoes off !!!

16 Replies

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  • I was told that DAS28 doesn't include feet as much more difficult to distinguish between tender and swollen joints as feet are so boney. I think the previous DAS 44 did, and some research showed that it didn't make a difference to the treatment outcomes. Easy to say if you're a doctor, but less acceptable as a patient.

    My feet are also my worst bit, but my new inserts have made a wonderful difference. They're proper customised ones made from casts of my feet, not the off the shelf ones. I got them from the podiatrist (took over a year mind, but got there in the end), so ask to be referred to one. I can now go for long walks again, with only short stops to let the burning sensation die away.

  • Hello Helixhelix, thankyou so much for your explanation which makes sense to me. I have seen a podiatrist and I have got the off the shelf inserts, but had no idea that you can have customised ones. Mind you, I'd better start on the trail pretty quick if it's likely to take some determination to achieve better comfort, like you. Just a last thought...... can your customised inserts be used in different pairs of shoes or will they only fit in one pair ?

  • No, I move them from shoe to shoe without problem. You only get one pair on the NHS, and they have to last you for life apparently!

  • hello Petalnumber2:) I feel your pain hun ,,,i have problems with my feet , i was examined & found out what was causing the pain & why i could,nt stand still with out swaying. Findings ,,,im flat footed i have no arch ,,also my toes are all mishaped & are all starting to turn in. This as been going on for afew years now. Im unable to stand with out feeling discomfort. Hope this as helped ,,,x

  • Hi Petalnumber2 - I also have pains in my feet especially if I walk barefooted. Sometimes the pain is so bad it feels as if I have broken my foot at times.

    Also my toes seem to go into spasms where they sort of open up and then I can't close them, this is really painful.

    I have problems in getting shoes that are comfy as my feet tend to swell up at times.

    I have not heard of "DAS" so am I going to look this up after finishing writing this.

    Kind regards

    Grannyshiraz

  • Hi GrannyShiraz

    Coming to this a little late I imagine you have already looked up some information on DAS, but if not you might find it helpful to watch our 'Know your DAS' video clip: nras.org.uk/about_rheumatoi...

    Kind regards

    Sarah Kate

    NRAS

  • yes i am with you all on this , as i been told the some about my feet , as being a woman i have lots of shoes , only wish i could were them , just look that them , and think may be one day, lol x

  • Feet and ankles (plantar fasciitis and achilles tendonitis) are enthesitis points and would come into a spondyloarthritis assessment rather than a RA assessment. They are a very common area for ankylosing spondylitis as well as other forms of spondyloarthropathy. If you have significant pain in those areas then really do push the point in asking the rheumatologist to check those for you because it just might be that you have significant enthesitis as well as RA, or that actually you would be better having a spondyloarthritis diagnosis and being assessed on that basis or that you have both RA and AS.

  • Well thank you for such an informed message, I have jotted down the different conditions which you have mentioned and I will definately look into what you have said.

    All the best, petalnumber2

  • I think that feet problems are just as common with RA as with other forms of inflammatory arthritis. This is presumably why there be a whole section dedicated to feet on this site? I believe the DAS leaves feet out because foot problems are so common/ inherent with RA that it is assumed that everyone with RA/ Inflammatory arthritis will have sore feet at some stage - not sure where I got that idea from but on here I think?

    For myself I have always had sore feet since I was young and have never been able to wear heels. When all this started for me two years ago my feet used to burn so much when I got out of bed each morning that it was like walking on red hot coals. Gradually this pain disappeared or perhaps I got used to it - and losing weight helped a lot too. But I still get burning feet if I walk in cities on hard surfaces all day or if I don't wear insoles and have new or unfamiliar shoes (always boringly flat!)

    I wear insoles that are foam called "Pro Feet" that I find in various chemists and they are brilliant - although they do make my shoes/ boots feel much tighter. My rheumy does atually examine my feet each time but there is very little to see with me so I have never been referred to a podiatrist yet. Tilda

  • I had not had my feet examined for four years despite complaining about the pain and burning. He had referred me to the podiatrist after my request (that was a waste of time for me as she was useless. I saw the podiatrist that my sister sees - in France, privately, with better results).

    Then this year I complained about the pins and needles that I had developed and the rheumatologist was horrified when he examined my legs and feet to discover that I had lots of wasting of the muscles and distorted joints.

    I do think that they need to be more aware of the ankles and feet. They so carefully examine the wrists and hands but feet seem to be a no-go area, and I think this is because they are not included on the DAS score. Even if the rheumatologists are not using this to give a score they have it at the back of their mind when assessing the severity of the disease.

  • I'm quite new to this site myself and I'm so glad to have joined you all. What a lovely group of people you are, I've learned so much from you all in the last 24hrs.

    Grannyshiraz, what a lovely name (I presume you like a glass of red wine!!) my toes also get stuck in one position, usually downward and it is painful, isn't it. It's challenging when it feels like walking on hot coals, I identify with this too.

    Oldtimer, 4 years is a long time to suffer without having your feet examined, and your message hit home for me, because I am noticing some bony nodules around the ankle bones (particularly my right one) and I find it difficult to straighten that foot. Also the pain up the side of my leg from the ankle bone is excruciating.

    I was only diagnosed in May 2011 and I was so worried during the first few months because, I am a carer to my husband who is wheelchair bound, long term diabetic and on dialysis. I do everything for him, so I need to be as fit as possible in order to cope.

    I've been a bit uncomfortable about putting my concerns about my feet/ankles to my Rheumy Doc, prtobably because I don't feel very comfortable with him. But I'm going to be bold and speak up at next app in January, because it would seem that you have speak up if you are going to get anywhere. That much I have learned from you.

    Anyway, Cristmas is coming and I feel sure we'll be swapping some funny and lovely stories during the weeks to come.

    My very best regards to you all, Petalnumber2 xx

  • hi,i to have had bad feet for years,since the age of 7 to be precise,my mum was told i had juvenile arthritis,and i have had numerous treatments over the years,constantly in plaster casts,cotersoine and gold injections and finally at age of 17 final op,then for years and years i was told that i had to `expect some pain,they have got worse and worse,again i`v been given cortisone jabs and stuff,finally 2 yrs ago i spoke to a really good doc and she sent me for x rays,i now have dislocated toes,due to damage through rheumatoid,which it seems could have been avoided if they`d been treated sooner,so angry,years of pain,and something could have been done,means more major surgery again now,why don`t docs take us more seriously???`

  • I'm so sorry to hear about your years of pain and frustration. I do think doctor's are beginning to wake up to the fact that each individual knows their own body better than anyone else. Some doctor's listen harder than others. Having said that it is no comfort for someone like you and me to an extent, because I have had urticaria/angeodema along with bad tummy flare-ups for years, until I firmly argued with my GP to send me to see an immunology specialist. Eventually I saw a specialist in Leistershire who got my condition under control and finally diagnosed crossover Rheumatoid. So I do understand your years of frustration. Is there anything that can be done to resolve the problem with your toes ?

  • Hi Petalnumber2

    As Helixhelix mentioned DAS44 does include the joints in the feet and ankles but there is evidence to suggest that the DAS28 is an equally accurate measure of disease activity and obviously is quicker and easier to count. I thought you might find it interesting to read the study from which this is taken (please follow the link below). I have also copied a short quote from the study: "It was concluded that no capacity to discriminate between ‘low’ and ‘high’ disease activity was lost by replacing the 2 comprehensive joint counts by the 28-joint count."

    clinexprheumatol.org/articl...

    Many people with RA do find their feet and ankles to be particularly problematic, and if you haven't had a look already you might find the Foot Health area of our website really helpful: nras.org.uk/about_rheumatoi...

    I hope this helps to explain things a little better.

    Kind regards

    Sarah Kate

    NRAS

  • Thankyou for your message Sarah Kate, I've had a look at the foothealth site which I found very interesting and informative. I'm a firm believer that you can better help yourself if you have the information at your fingertips. Also the article about das 28 has answered my questions and I now understand how it works. I must say that I really like this NRAS site. I think it helps to meet others who are in the same situation and share info and support each other in our lows and highs. Thanks so much. June/petalnumber2 xx

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