Feet of endurance ;)

Hello all. I was wondering if anyone has had the same problem as me, in that my rheumy and rheumy nurse are not interested in my feet at all? I understand their reluctance to look, as they are, quite frankly, minging. However, my toes seem to be determined to plait themselves, and as this and other unpleasant "features" make walking more and more painful and they are getting slowly worse, I thought they might be significant I terms of controlling my condition? Is it usual to focus only on the hands, or should I be more assertive when talking to the pros? Your thoughts are welcome!

16 Replies

  • I get asked in passing about feet but fortunately I only have two toes which are tender when everything else is playing up. The DAS28 score which is used to measure activity score does not include feet. You could ask the nurses who you should see regarding your feet to open the subject up for discussion. Hopefully NMH will be along shortly as she has had issues with her feet and be able to give more advice. Farm

  • Hello Kathy

    I go to the Podiatrist every couple of months and they sort the nails. The only thin is after a couple of months I have the talons of an eagle when she clips them.

    Also I have been supplied with Orthopedic shoes that have insoles in and a raised heal.

    So it helps to protect my bad joints. Give it a try, ask your GP


  • Be more assertive! Although rheumies don't spend much time on them as there's little they can specifically do they should be able to refer you to a podiatrist who specialises in our sort of feet. Getting custom made inserts made a huge difference in my life, and I also got exercises that have helped.

  • I need to be assertive about my tootsies too. My rheumy tends to ignore mine - and that's not because of the DAS28 score as it is not used for PsA.

  • My old rheumatologist wasn't at all interested in my feet - 'the hands are everything.' A pretty shortsighted approach when, as the chiropodist says - 'you don't walk on your hands.' :) Just to shut me up about feet, I think, I was sent to the orthotist and it was one of the most worthwhile appointments I have ever had - the orthotics literally keep me on my feet. They aren't painless, but they are soooo much better.

    I now have a new rheumatologist who, refreshingly enough, insisted on seeing my feet without me raising the subject.

    DAS does place a huge emphasis on the hands, which is all very well if they are your biggest problem. I know that disease activity in the hands reputedly reflects what is going on in the rest of the body but that certainly isn't the case for me. My neck was in bits long before I had swollen finger joints.

    I say push for attention to be paid to what's bothering you. You're the one that has to live with it.

  • I am having pain in my feet referred for podiatry assessment and I have one leg shorter than the other.I am going to have a raised shoe.,

  • I was assertive at each appointment but still got the "sorry, out of my hands as they're not included in the DAS 28"! My feet were where the disease first presented & have always been examined by my previous Consultants but since returning to the UK two years ago they've been dismissed. As my mix of meds is working I rarely show any inflammation but my feet have continued to be problematic. Fortunately at my last appointment the Registrar who I was down to see was behind on her clinic so my Rheumy called me in. She said I looked better than last time (I had unmedicated OA which is now responding well to a mix of pain relief) & asked what I had to report & to cut a long story etc. I said not much as everything was under control but as we had some time could she please just examine my feet. To my amazement she said to go into the examination room, lie on the couch & she'd take a look, She was very apologetic when she saw them sockless & even more so once she'd checked them as I'd lost all the fatty tissue so basically walking on bone which had caused 6 corns & thickened skin. My arches have basically collapsed which is helping toward throwing my balance out making me unstable barefoot (which I never am because it hurts like billy-o), my ankles are swollen, they have poor rotation & very little movement. I had inflammation in my tarsals & metatarsals & upper foot mid metatarsal is problematic, giving shooting pains periodically. As disease activity was finally confirmed thankfully an increase in MTX has eased my inflammation & my ESR levels are dropped but I can't help but feel the clawed toes & all my other problems wouldn't have happened if only my Rheumy would have looked at them 2 years ago despite reporting that they hurt & continually swollen at each appointment & receiving the stock answer. I was referred to a Podietrist who's doing a sterling job & I will eventally have some custom made insoles, she's building up off the shelf ones just now until the issues that can be corrected are.

    I appreciate that the toes & feet as a whole do a lot of hard work & there are a lot of bones but so do the hands & they aren't exactly bereft of bones! The original DAS (which is a 44 point exam & what was perfomed when I lived abroad) included other places I have issues with..... as well as toes, feet & ankles, the hips & neck are included, jaw as well but I'm of the opinion if the feet were where RD was first noticed then particular care should be taken to check them even if they're not included in the DAS 28. So now I have trainers instead of slippers & it's no more mules or skimpy sandals, full shoes from now on to hold my foot to stop me going over on my ankle & to accommodate my orthotic.

    Sorry, gone off on one! Do state your case, let me be an example to ignored feet & don't take no for an answer. Good luck. ;)

  • My rheumy says that it's not time to 'do anything about' my feet just yet. I suppose he means it's not time for surgery yet. But they are the one part of me that hurts all the time and the most deformed.

    We got a little old dog recently. She has a range of health problems (some autoimmune - hello!) and the charity we got her from pay the vet's bills - it's a kind of permanent fostering scheme. Anyway, I rather wish somebody would foster me under a similar scheme. Between us, the vet, me and the charity put a lot of thought into her medical care and make careful decisions. She's already had major surgery and is doing just fine.

    The decision making process hinges on a) whether she's strong enough to undergo procedures, b) whether the procedures will improve her quality of life and c) will they prevent problems from getting worse. I want my rheumy to apply this line of thinking to my tootsies.

    He is an excellent rheumy who has helped me a lot, so he might be thinking carefully about my feet. But it just doesn't seem like it as he's got almost nothing to say about the wretched things. In cynical moments I wonder if that's because nobody's paying my vet's bills.

  • Hi

    I also have problems with feet toes and ankles but are not looked at during rheumy appts. As apparently problems with feet can be caused by a lot of other things.

  • After my feet being ignored, I first asked for a referral to podiatry. Unfortunately, the NHS podiatrist was awful, didn't even take a history before giving me a lecture about wearing high heels (which I don't!). So I went privately to a podiatrist who was excellent, but she then said I should see an orthopaedic surgeon - 9 month wait on NHS, so I paid. Then had a joint fusion.

    Much to the surprise of the rheumy team who "hadn't realised my feet were so bad" !!

  • I have had RA over 20 years - started in my feet and they continue to be the major cause of pain. it has also been my experience that their is little interest in our feet. I have had foot surgery and definitely have mixed feelings about the outcome. Trainers are my footwear.

  • My RA mainly affects my feet and ankles. I wouldn't say the rheum clinic are completely disinterested but pretty close! After a few years of watching the bones in my feet slowly move around, I sought an opinion from a private orthopaedic surgeon who specialises in foot and ankles pathologies. He ordered an MRI scan both feet and ankles. Rheum conceded that yes, my feet and ankles have been badly affected by RA. Yet, several years later, she still examines my hands very closely and never even asks me to take my shoes off.

  • I've been talking a bit to my GP about this, she's also a friend so this was without her doctor hat on! Her advice is if you have problems with your feet & your Rheumy refuses to examine them ask to be referred to Podietry. If you still have no joy ask your GP to refer you.

  • Thank you so much all of you for your helpful and informative replies. I have asked to be referred to the podiatrist as a result, particularly as like many of you have said, my feet are the part of me which affects day to day life the most. Interestingly my MRI at initial diagnosis made particular reference to the damage to joints in my feet caused by inflammation. Will let you know how things go when I eventually get an appointment!

    Hope you are all well and enjoying a bit of sunshine like we are on the south coast. thanks again xx

  • It is the state of my toenails which causes me problems, but Poddy & GP not interested as they say its cosmetic.

  • Have a look at this & if any apply go back to your GP & request referral samjam nhs.uk/Livewell/foothealth/...

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