Hang 10: Is the Jury Still Out on Rheumatoid Arthritis Feet? | Rheumatoid Arthritis Warrior

Hang 10: Is the Jury Still Out on Rheumatoid Arthritis Feet?

This is part 2 of a series on RA feet. Yesterday, I conveyed my skepticism about failing to “count” Rheumatoid Arthritis forefeet when measuring disease activity.

“Individuals with rheumatoid arthritis (RA) experience debilitating foot pain and deformity, which in turn contributes to the substantial physical disability well-documented in this population. More than 70% of all individuals with RA report moderate to severe foot pain, exposing a significant clinical challenge and an international public health priority. Effective management of foot pain and prevention of foot deformity are the chief goals of intervention to this challenge. Increasingly, a team approach is used to institute multidisciplinary care. Despite the high prevalence of foot issues, there remain several significant barriers to effective foot care, and evidence indicates that the majority of patients with RA do not access foot care.”

RA feet: a hallmark symptom?

Hang Ten logo screenshotI appreciated this practical editorial on the topic of RA feet by Smita Rao, a physical therapist at New York University. Rao calls foot deformity the “pathognomonic in RA,” which I found ironic since feet were only recently included in diagnostic criteria for RA (toe joints can be considered “small joints”). And, as we discussed yesterday, investigators have again determined that measuring feet is unnecessary to gauge disease activity.

Cool word, pathognomonic, says this Grecophile.

The article, “Quantifying Foot Function in Individuals With Rheumatoid Arthritis: Recent Advances and Clinical Implications,” was prompted by two new 3-D motion studies on RA published in this month’s Arthritis Care & Research. Both studies make valuable contributions to the evidence about what happens to the feet of a person with Rheumatoid disease, using state of the art technology to evaluate “inflammatory and mechanical” processes that contribute to foot disability.

The first, “Foot and Ankle Kinematics in Rheumatoid Arthritis: Influence of Foot and Ankle Joint and Leg Tendon Pathologies,” examines how gait changes from the early stages of RA, as a result of disease effects on feet and ankles.

The second, “Tibialis Posterior Tenosynovitis and Associated Pes Plano Valgus in Rheumatoid Arthritis: Electromyography, Multisegment Foot Kinematics, and Ultrasound Features,” studies how muscle function is altered as a result of the way tendons are affected by the disease.

Bottom line on our bottom joints

The feet, like the neck and the hands, are affected in most people with Rheumatoid disease. And the involvement can develop in various ways. Since the disease does not limit itself to synovial membranes or to hands, we must broaden the perspective of clinicians and investigators to improve care for people with Rheumatoid disease. I welcome Dr. Rao’s perspective as a physical therapist: “Also, if we are indeed to help our patients, objective evidence is urgently necessary that will allow us to test interventions and aid treatment in the critical area of foot issues in our patients with RA.”

Until there is a cure, knowing “the majority of patients with RA do not access foot care” is not acceptable.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

29 thoughts on “Hang 10: Is the Jury Still Out on Rheumatoid Arthritis Feet?

  • April 3, 2013 at 7:53 am
    Permalink

    It is ridiculous there is even any argument about feet and RA. My RA is still not that bad but my feet, my big toes and joints that connect them to my feet are in really bad shape. Recently I injured one of my feet (and it was me just standing up and a bone broke). A PA had my foot x-rayed and said, “Wow. Your bones look horrible!”

    And even I, the non-medical person, could see how bad the bones are.

    If our feet give out, how will we walk???? I pray the medical world will see the truth here.

    Reply
  • April 3, 2013 at 8:27 am
    Permalink

    Having an EMG today on both feet due to neuropathy. Feet are definitely involved in some way!! I have a few toes that are mis-shapen but not too bad. Getting used to wearing flats! My feet and ankles were the first joints that hurt and what made me see a rheumatologist.

    Reply
  • April 3, 2013 at 11:13 am
    Permalink

    Kelly, great post !!!

    Is there anyway that RA Warrior or the Rheumatoid Patient Foundation can request that the paywall for the journal Arthritis Care & Research be removed for us or that we can access the articles without cost?

    As we know, there is power in numbers so a request from a group of consumers is likely more effective than requests from individuals. I know that you’re rather busy : )))

    Thanks

    Reply
    • April 3, 2013 at 11:30 pm
      Permalink

      Hi Helen, I do have a press subscription to some of those journals, but for other ones, I have to use various work-arounds also. I cannot speak for them of course, but I do doubt that ACR would make any article public that is not already public.

      You probably know that “access” to such journal material is a debate that’s going on across academia. From what I’ve read of this debate, some view the public as “consumers,” as you said, but many do not – they believe that their journals serve the profession in question & that you and I have no “right” to that information being publicly available. (That was a very general statement & not referring to any specific person or publication obviously.)

      I’m sorry this is so frustrating. I’ve spent hours looking for information many times because of the same problem.
      All of the articles quoted in the blog are always linked to a publicly available abstract – if the abstract isn’t already open on the page when you click on the link in the post, you may have to click again on “abstract.” Going back through old posts, I’ve found that many times an article is open to the public when I link to it, and then later it is archived and becomes subscription only (or pay per view). If I see that, I change the link to the abstract, but of course I can’t keep up with all of them.

      Often if the article is referenced in another study, the reference link opens the article even if it is closed. It’s usually easy to find a list of places the article is cited. I realize all the work-arounds we have are not a substitute for an open book policy. Dove is an open access journal, that has a rheumatology section – that’s a start. http://www.dovepress.com/open-access-rheumatology-research-and-reviews-journal

      Reply
      • April 4, 2013 at 1:19 am
        Permalink

        Thanks so much, Kelly. I miss having easy access to all journals at the university : )

        Reply
  • April 3, 2013 at 2:51 pm
    Permalink

    My rheumatoid Arthritis started in my left foot. The doctor’s didn’t know for months what was causing my foot pain. Then an urgent care doctor actually did a blood test to check for the RA factor.

    Reply
  • April 3, 2013 at 4:07 pm
    Permalink

    thank you for doing this post – my feet have been in decline for the past year- and will be seeing a podiatrist in 2 weeks- toes going numb on one foot severe pain in other. Can hardly walk and I have to do a lot of walking to manage the farm. last night the top of my left foot hurt so bad could not sleep, woke this am and it is all swollen. but RA DR, never checks or looks at my feet.

    Reply
    • April 4, 2013 at 1:54 am
      Permalink

      Mine does Kelly. He knows that I believe that’s where it started, so he asks how my feet are and feels around on them and even has had them x-rayed. Be candid and firm with your doctor. Remember, you are your own best advocate.

      Reply
  • April 3, 2013 at 7:28 pm
    Permalink

    Interesting! I have more deformed toes than fingers!

    Reply
  • April 4, 2013 at 12:07 am
    Permalink

    rawarrior thank you for the foot article- it’s so true! My feet were painful years before my hands

    Reply
    • April 4, 2013 at 10:03 am
      Permalink

      For me it all started with my feet and almost 6 months of grabbing straws trying to figure it out. It wasn’t until my frustration level was at a high that I went back to my GP and he believed I had RA. He ran the RF test and then put me on methotrexate. Since then my RA progressed up my body effecting not just small joints but most major joints also.

      Strongly believe that the feet should be considered when diagnosing rheumatoid disease. There are many “small joints” in your feet. In fact my rheumy checks my feet during my appointments for “disease activity”. As we continue to learn more and more about RD we need to move beyond the preconceived notions that have prevented people from being diagnosed and treated early.

      Reply
  • April 4, 2013 at 10:03 am
    Permalink

    I’ve had RA for over 20 yrs now. I’ve been to several different feet drs and they all tell me that there are too many nerves in the feet and its impossible to give cortisone shots in feet. My impression from all these Drs is that is the only solution. So in conclusion there is no solution. So what do I do for ra nodules on my feet. Without slamming a book on them which never worked for me. Thanks in advance!

    Reply
  • April 4, 2013 at 10:12 am
    Permalink

    with all the meds i am on the only symptoms that don’t respond are in my feet as the perpetual inflammation seems unaffected by the treatment(there is aome erosion of bone although not too bad at this point). it disallows me to walk any distance on hard suraces (museums, shopping, around town) even though i can kayak for 3 hours straight. crocs and other squishy, bulky footware are my only recourse or my feet go numb and are in great pain. no therapy is offered or any specific treatment – i will address this in my next round with the rheumy.

    Reply
  • April 4, 2013 at 11:11 am
    Permalink

    This article exactly explains my situation. I have been Dx with RA for 12 yrs now. I have never liked to complain or speak about my ills to others but I have learned that this philosophy doesn’t help anyone. I am a RN with an advanced degree and know better. I have been seeing a great rheumatologist and have tried many med combinations. I’ve had shoulders, wrists and nodules on the bottom of my feet injected. My achilles grew a golf ball sized nodule on it limiting my gait and finally tore requiring surgery 2 yrs ago. I feel my meds have stabilized my other joints for about 4 yrs but it is as if they do not relate to my feet. I have terrible pain in my feet, stabbing, burning and ripping pain. The crying kind of pain yet my toes are numb to touch. It is not diabetes related. My toes are twisted, numb but have sharp pain. How is it possible, I’ve asked myself. I really hate the pain of “driving spikes” in the tops of my feet. Those pains I cannot hold in my response. My family doc says it’s RA but my rheumy just avoids it until I expose my feet and require her to look. My big toes have deformed causing the bone joint at the base to protrude so much that the skin is taut and white. I also have marble sized nodules on the side of my little toe joints. My rheumy says they are RA related but my big toes’s are bunions. I love beautiful shoes but they are just a dream now. My main concern is “getting by” trying to walk with the least pain. I’ve learned that a torn achilles takes a yr to heal. It is my feet that stops me. The other joints, tendons can be tolerated with meds. The feet are a whole different ballgame. May God bless you all.

    Reply
    • April 4, 2013 at 11:50 pm
      Permalink

      As far as I understand it Bonita, RA causes bunions. It also causes the other things you describe like “driving spikes” sensation, twisting toes, the nodule on your achilles, and the ripping, burning pain. I’m sorry your feet are so troubled.

      Reply
    • April 9, 2013 at 11:17 am
      Permalink

      I also grew a golf ball sized nodule on my Achilles, and I still have problems with the tendon over a year and a half later. My feet are also one of my main complaints with my RA, and they hurt for well over a year before other joints got involved and I finally got a diagnosis. I also have substantial pain in my heels, does anyone else get this as well?

      It is such a burden.

      Reply
  • April 4, 2013 at 11:51 am
    Permalink

    I really appreciated Bonita’s post. It seems no matter how educated, professional, or well-trained we are, the field of rheumatology is full of difficulties that directly impact on our well being, the understanding of the disease, and our treatment. Bonita’s story couldn’t illustrate these points any better.

    Sometimes I wonder about the value of us telling our stories as, at the least we are labeled as whiners and at the worst we’re suspected of having mental health problems. However, when I see the hundreds and thousands of similar stories of people with RA, I see the value in our “case studies” that will HOPEFULLY provide a better understanding of the disease. Researchers can dismiss people’s stories as anecdotal evidence but with social media it is hard to ignore the similarities.

    For myself, my level of disease activity has been questioned for the past six months or so. This has taken me quite by surprise as my first several months with the disease, I received excellent medical care. My CRP / ESR have always been normal. My CCP and RF are both high and positive. I had erosions evident on power doppler ultrasound tests within the first month of diagnosis. My symptoms are not well managed because of side effects of medications and complication from another disease that makes taken Biologics very risky. Also, research shows that when CCP and RF are both high and positive, the prognosis is poorer.

    I recently had repeat ultrasound of my hands and feet. I now have 10 visible bone erosions in the joints, 6 sites with synovial hypertrophy (swelling) and 3 areas with fluid. My RA is progressing despite “little clinical evidence of inflammation” upon clinical exam by the rheumatologist. My feet are the most involved with 8 erosions. I cannot walk more than 50 feet without extreme pain.

    Because of little conspicuous swelling and normal CRP / ESR, the possibility of somatization has been raised by the care providers where I have sought treatment. My credibility has been questioned. I’ve also been told I have a centralized pain disorder. I think these labels are handy devices to use when medical answers are not readily available because of the lack of consensus on standard of care in rheumatology.

    The reason I’m sharing my story is because IT IS ESSENTIAL that we advocate for proper, OBJECTIVE testing of our joints as well as all other systemic symptoms. The use of power doppler ultrasound and/or MRI should be THE standard care for every person with RA.

    Once again, if I hadn’t strongly advocated for repeat ultrasound of my hands and feet, I would not be given the opportunity for proper medical treatment. This is a life-threatening situation given the seriousness of the diagnosis of rheumatoid arthritis.

    Reply
  • April 5, 2013 at 12:58 am
    Permalink

    my name is shannan and I have arthrits how do u try to say calm when ur in pain and can’t deal with it…..

    Reply
  • April 5, 2013 at 9:22 am
    Permalink

    Wow – My Rheumatologist suggested x-rays the other day, and asked for hand and foot even though my hands look much worse. When I asked why, she said, “Even though it shows more obviously in your hands with the swelling and redness, radiological changes often happen in the feet first.”

    I get grouchy with her sometimes because my disease is totally uncontrolled despite dozens of attempts on meds, but I think I need to give her a bit more credit, eh?

    Reply
    • April 5, 2013 at 11:02 am
      Permalink

      Raenne and Warriors,

      Xrays don’t show synovial hypertrophy (swelling) or fluid at all. Xrays don’t show damage until several years after it has occurred even if you already have evident bone erosions.

      Power doppler ultrasound or MRIs are much better at giving accurate images of all the features of RA. MRIs will show bone edema, also.

      Xrays should be obsolete in rheumatology as the research is quite clear about these points.

      Reply
  • April 5, 2013 at 7:35 pm
    Permalink

    The American College of Rheumatology has links to forms Rheumatologists can use in their clinical practice to assist with documenting disease activity as per the ACR 2012 Guidelines.

    The SDAI and CDAI are forms used to document the number of tender or swollen joints. Although, the forms at least include the patients’ perspective and BOTH tender and swollen joints (not just swollen), you’ll notice that the feet are not included on either form. NOT GOOD !!!

    https://www.rheumatology.org/Practice/Clinical/Forms/Clinical_Forms/

    Reply
  • April 12, 2013 at 2:25 pm
    Permalink

    my feet have been agony for the last year,….Doctors said it was plantar fascia…in both feet??…Since had a RF positive…still awaiting rheumy appointment tho!

    Reply
    • April 12, 2013 at 2:29 pm
      Permalink

      hi Wendy, if it is RA in your feet, it could still be the plantar fascia- – Rheumatoid disease can cause many -itis’s such as tendonitis or bursitis. Good luck with the rheum doc – I hope you don’t have to wait too long.

      Reply
    • November 5, 2014 at 10:41 am
      Permalink

      Hi Wendy, I know its been a year since your last post about you Plantar Fascia. I was wonder if they found out if you truly do have the RAD? Just yesterday I forced myself to see a podiatrist for the very first time, as both of my feet have been in some serious agony for the last several months. I was told I too have the Plantar Fascia and Over pronation of both feet. He says this could be because of being over weight or too much running. For one I don’t run any more and secondly I’ve been at 160lbs for 7 yrs straight with maybe 4-5 pds in fluctuation from time to time. Then he says, it could be just the ligaments in my feet that are the problem then. As my feet have only been this severe for the past 3 months. He suggested that I may have Osteo as my feet and ankles constantly click. I told him that this wasn’t possible as I was told I didn’t have osteo and X-rays have proved this. My right foot being the worst. I was then told to have X-Rays done that day of both feet and ankles. I’m not sure if RAD will be found. I suggested that should nothing be found, maybe doing an ultrasound on both feet may find something. I’m seeing a new Rheumy on the 21st. Wish me luck!

      Reply
  • April 25, 2013 at 11:46 am
    Permalink

    all i know is…My feet hurt all the time.. i went on a walk over the weekend…It took almost 2 full days for me to feel back to normal, feet wise.. YET my feet always ache… I wake up like i’m 90 years old. I put on my sneakers and fresh socks its a bit better. but the minute I sit for a while, and get back..the pain is back … for me, the feet are the worst, then elbows..then hands.

    Reply
  • April 3, 2017 at 2:44 pm
    Permalink

    I’ve had RA for 4 years. I’m 67. All my symptoms are controlled by medication. I would be totally able to do normal things, but my feet hurt. I have no swelling or pain in my toes, but some days I am unable to walk. I spent 2 months in a walking boot. My RA doctor thought I had a stress fracture. As soon as that foot healed, somewhat, the other foot was affected. I believe I have tendonitis. I’m going to have my doctor look into it and see what treatment can help me get back on my feet. RA SUCKS!

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *


“imaware™
    Advertisement
Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.