Surgery, Stories, and Feet amid Stubborn Rheumatoid Disease

One thing I wish every day is that everyone in the world could read the priceless emails from other warriors I receive every day. If everyone treating or researching this disease could read them, comprehension of the disease and care for it would improve. Family members could have greater understanding. Employers and friends could begin to grasp how Rheumatoid disease affects the lives of people.

That is what led me to start the Onset Story project. It is invaluable to other patients searching to find out whether anyone is like them. But it also allows people to tell the world their stories – the good, the bad, and the ugly. There is never any sugar coating or editing down the experiences. (List of already published stories here.)

Here are two notes I got this week.

Sometimes I get a note that tugs at my heart like these words from Monica:

One of these days I hope I will have energy to figure out things like leaving a comment, or tweeting, or sending you my onset story! For now, I just have to say I saw your feet and a tear rolled down my cheek. That’s what my feet look like too. I am guessing they feel about the same…

Want to know what Dr. Horrible the rheumatologist in Chicago said to me this summer, when I showed him pictures like that–of my hands, wrists, elbows, feet, etc.?

“Those are just pictures. They don’t mean anything.”

I am so ill. I have been severely ill since March, in and out of the hospital. I FINALLY found a rheumatologist who would treat me—my fifth since March, seventh of my life. Someday I will write about him too–an angel…

Sometimes, I get a note from someone like Kathy who wants to help in the fight by sharing her own battle.

Kathy foot Rheumatoid nodules
Does reading it bring out common themes to you? Waiting for a new treatment to be approved because everything else has been tried? Doctors who “can’t do anything” for you. Or symptoms that stubbornly continue even with a long list of medications…

Many thanks to Kathy for sharing story. And her feet.

“Kelly,

Kathy Rheumatoid disease surgery pinsMy name is Kathy & I have been reading about your fight for RA. I am attaching a photo of my foot after surgery. I had the surgery on both feet. Some bones were removed in the toes & a pin (placed) in the big toe. I had a hammertoe that was taken out. All my toes were dislocated from this disease. I now have one toe that is turned all on its side. I just turned 61 and have been battling this since I was 42. I also have had surgery on my hands. I get lots of nodules. They are still swollen & the base of my fingers is all swollen on both hands. I have tried every new thing that comes out. It either doesn’t work or I am unable to take it. I am now on Actemra, Arava, 4 mg of prednisone, Neurontin, Flexeril, Cymbalta and Restoril for sleep. I try to always keep a positive attitude and it does help. I keep going through the pain as I walk on the treadmill each night. I am hoping I get a chance to try the new med coming out & hope it will help. I think my feet are beyond repair now though. The big lumps on the bottom are coming back. The surgeon said he couldn’t do anything for that because it is inflammation & you can’t be cutting into that. I have pain in my back & hips also. Feel free to share my photos & story. I am sending another photo of the bottom of my foot before surgery. I am reading all your info & appreciate all you are trying to do. I do have an understanding rheumatologist.”

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

33 thoughts on “Surgery, Stories, and Feet amid Stubborn Rheumatoid Disease

  • November 2, 2012 at 7:08 am
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    Thank you for the story about your feet. That is where my RA began and is the worst. It was close to 20 years before a young female rheumatolgist said after Xrays that is severe RA! I had seen so many doctors who asked me stupid questions like had I tried doctor Shoals foot pads and bunion pads. My current rheumatologist just looks at my hands every check up and says nothing but keep doing what you are doing…

    Reply
    • November 2, 2012 at 8:03 am
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      Wow, Donia, all those years and no one thought RA because it was your feet. And there are still many rheum docs who were trained to “treat by the hands” docs although hands are not the measure of disease activity. How many times feet or knees or neck go unexamined while a person suffers?

      Reply
  • November 2, 2012 at 7:10 am
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    Oh Kathy , your poor feet! We all understand what you are going through.

    My RA started in my feet. For years I was undiagonsed, went to podiatrist after podiatrist . They gave me cortisone shots, expensive orthotics etc and of course, nothing worked. No mention of possible RA , just comments like” you shouldn’t have worn high heels in your twenties”

    Finally the RA attacked my whole body and my family doctor suspected RA, tested for it and sure enough…

    I was lucky to find a good rheumatologist and am on Humira and MXT which helps the rest of the pain, but my feet have pretty much had it by now.

    I’m amazed at the ignorance of RA in the medical profession. Thank-you Kelly for working to change this, we are all indebted to you.

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    • November 15, 2012 at 1:29 pm
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      Your not wrong there. My Doc sent me to a pain management specialist because he coudnt do anyting else for me. Of coures I go there and they say they cant do anything because Im to young lol.

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      • November 17, 2012 at 8:40 pm
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        That sounds ridiculous Joe & I can’t believe someone would make it sound like you have to suffer because you’re “young”! How stupid is that?

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        • November 17, 2012 at 10:36 pm
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          Im not sure what to do at this point. I lost my job because none of these idiots can help me and Ive been turned down by my long term disability. I jsut dont know why I cant get help.

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  • November 2, 2012 at 8:55 am
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    Wow
    Thanks for sharing.
    Very meaningful.

    Reply
  • November 2, 2012 at 9:19 am
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    Kathy, your photos brought me to tears! I am not at that point, but may well be on the way. I am constantly amazed at all of the stories I read here. When my first started, I thought I was all alone. God bless you – Kelly – for creating this website so “we” don’t feel alone.

    My saga only began at the start of 2012. Early in January, my left ankle started hurting. I wrote it off as maybe I had twisted or something; didn’t really think a lot about it. But it steadily got worse, and it got to the point where my whole ankle was swolen and it hurt like heck to walk. My regular family doctor only takes appts, so I went to the other location which takes walk-ins. Long story short – I was misdiagnosed several times. I ended up in the ER twice from the pain; still misdiagnosed. Finally, was referred to local orthopedic clinic, and diagnosed with “tibialis tendinitis”. Wore a cast for about a month, and was able to work; then put into a brace (the kind that goes into your shoe) and had to be home for 4 weeks. Finally, when I got out of all of those things, I was referred to an RA doctor. Lord, she was the RA doctor from hell! She ended up “firing” me supposedly because my mother and I were verbally abusive to her and her staff! What??? My mother remembered another RA doctor that my Dad had seen a few years back; started to him. OMG – a completely different experience! I LOVE my RA doc! and his Team!

    He was floored that the devil RA doc had not even had me take a TB test or have an xray of my chest before putting me on meds. I didn’t know they should have been done FIRST until I started with my good RA doctor. He thoroughly examined me – I mean had me stand up and moved just about every joint on my body that he could. He checked my knees, hips, ankles and feet. I had never had such a hands-on doctor!

    Oh, and I failed to mention that after wearing the cast, I could barely walk, I hurt SO much mainly in my knees, hips, lower back. When I first walked into the good RA doc’s office, he asked me why I was using a cane. I said because I can barely stand up, much less walk! I know it was obvious to him; I think he wanted to hear what I would say.

    After starting the Enbrel and prednisone and some other meds, I am now able to walk – still with some pain but NOTHING like it was initially. I still hurt in my knees mainly, but also my lower back, my hips, sometimes my arms and fingers. I have a new “knot” on my right middle finger. All in all, I am doing better.

    One of my biggest issues is the fatigue. My poor house is in horrible shape since the first of this year, because I simply cannot do as much housework and cleaning as before RA. I am working full-time, so by the time I get home, most nights I have no energy to do a lot of cleaning. I do what I have to do; the rest will be there for another day. I finally put up most of my “real” plates/utensils, and have substituted them with paper plates, plastic utensils – just use and toss! My RA doc told me to do that a while back, but I just got around to it – saves me a lot of time and hassle and hurting!

    Writing this today, my left foot is starting to hurt again, and I am horrified that it is this tibialis tendinitis thing coming back. The pain is coming up from the bottom of my foot plus the inside of ankle is starting to swell slightly and is slighly painful. Two of my middle toes on my left foot have been hurting, which I figure is the RA. I’m sitting at work with my left shoe off, and my foot propped up.

    So that is pretty much my story. I am eternally grateful for finding my “good RA doctor and team” – I feel like they saved my life. I know I still have this battle to fight, but I have this great team on my side.

    To all of you who have it much worse than I do, God bless you. My heart goes out to each of you. I wish more people could just try to understand a little more about RA.

    Reply
  • November 2, 2012 at 9:26 am
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    A great read as my feet are the worse for me. I finally got to see the xrays and it was shocking. RA has destroyed the right foot the worse with bone bending and erosion. I used to never wear sandals because I didn’t want anyone to see my ugly feet. I finally decided I didn’t do anything wrong to get these feet so I now wear sandals anytime I can! I’m getting inserts soon as I am hopeful they will ease some of the foot pain. Thanks Kelly for all you do!

    Reply
  • November 2, 2012 at 9:44 am
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    I am amazed that my rheumatologist has not once wanted to look at my feet, despite my saying how deformed they are.

    Reply
    • November 2, 2012 at 1:53 pm
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      Mike,
      Just pull your shoes & socks off & show him your feet ! That’s what I do ! You have to be your own advocate in this disease ! Next time you go remember that !

      Reply
  • November 2, 2012 at 10:05 am
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    Hi, I was told my my rheumy on thuesdsy he told me he has no more treatment to give me have tried them all.
    So what am i suppose to do now paining all over. Feel lost at the moment . Can not do anything but sit all day watching T. V

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    • November 2, 2012 at 1:55 pm
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      I would try another rheumy ! I am on the latest for now & it doesn’t do a lot but I am mobile.What is the latest thing you tried Maureen?

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  • November 2, 2012 at 11:26 am
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    My mother that your reading about Kathy, has been a fighter with this disease and never gives up she keeps a positive attitude and fights it every day. I encourage all of you to never stop fighting and live each day knowing your going to not succumb to this disease. She has been through a lot and rock those toes in your sandles, I painted my moms toes when she came to visit and put cute flower stickers on them. Her toes are not ugly, just have been down a rough road….. I commend all of you for, keep fighting and thank you for supporting my mother in her fight:) Love you mom

    Reply
  • November 2, 2012 at 12:17 pm
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    These photos brought a tear to my eye as they reminded me of my own mother. She had a toe amputated and others pinned to try to “fix” them. All it did was make the next toes along collapse into the space left by the amputation. Her feet caused her tremendous pain as did her hands. Sadly I have “inherited” RA and I worry that I will end up like my poor Mum did. I live in wide fitting boots, I don’t even own a pair of “pretty shoes” any more. All I hope for is that my children do not end up with this awful disease

    Reply
  • November 2, 2012 at 1:19 pm
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    Hi – I have these same nodules on the bottom of my feet too. I would like to have my feet operated on but am wondering how your surgery came out with your feet. It looks like there are pins to straighten out the toes — how long were you in this ‘state’? And what is the prognosis for reconstructed feet, do they revert to the same issues as before, lumps, hammertoes etc.? Hang in there, this disease can be brutal but we have each other.

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  • November 2, 2012 at 1:54 pm
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    Pictures tell a lot – thanks for sharing. Your post-surgery shot looks like my most recent of four surgeries (both feet). It was two years ago and no net gain (well, it does Look better). Metatarsals are once again drifting and new callouses/lumps to walk on. Next time, I am seriously going with amputation and be rid of the most painful part of my body. As extreme as it sounds, it is much better than the 3 months of no weight bearing (I was a model patient – thanks be to yoga) and no real improvement. My Doc was a well-recommended orthopedic foot surgeon, but next time it’s a Podiatrist. They do the same surgeries, but are much more focused on recovery.

    Reply
  • November 2, 2012 at 8:02 pm
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    Dear RA Friend:
    After reading your story and looking at your picture, I feel inclined to tell you that “you” are what’s inside; you are your heart and mind, not what people see on the outside. If your heart is kind and beautiful, then you are beautiful, and anyone worth being a friend will understand that and be compassionate with you in regards to this awful disease. I, as well, have had RA for 17 yrs and I understand your struggles and your pain. Thank you and God bless you for sharing your story and continuing to fight the good fight.

    Reply
  • November 3, 2012 at 12:50 am
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    When I see the photo of the foot with the pins I want to cry. Reminds me of my foot three years ago that surgeon “butcher” ruined. I’ve now been one year on a two year wait list for “miracle surgeon” to operate and hopefully fix it enough s I can walk again. I’m running out of time…ciao

    Reply
  • November 3, 2012 at 1:17 am
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    Yes Kathy, commiserations on your feet.I find when i go to the GP, they always look at my hands and one day i said my feet had been especially bad, and my Gp said i thought it was just your hands, i was quite surprised. I guess if they don’t see them and you have walked in, they forget.Regards to housekeeping, i did a spring clean yesterday, live in Australia, and a few hours after, i felt really unwell,when i am feeling good , i forget the fatigue till it hits me, and then think how silly i am to overdo things.
    It’s such a fine line the fatigue, and not really understood by people who do not have RA. Cobwebs just don’t care either.

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  • November 3, 2012 at 3:02 am
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    Dear Kathy,
    Just to tell you that you are a brave, courageous woman, you brought me to tears and I just could not watch your pictures and remained silent. You are in my prayers, God listens. I’m also learning to keep a positive and have discovered that it is a process that requires discipline. You are an example for all of us that battle with autoimmune diseases. May God bless you now and always.

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  • November 3, 2012 at 7:55 am
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    I was told I have an aggressive form of RA…this by my rheumy who I think is the best thing that’s happened to me as she’s so caring. I have had flares…most before I was diagnosed in August of last year. I was going through a pretty bad flare at that time–so even had to go to O.T. to get my left hand working again. I’ve been beyond fortunate since then as whatever my “angel” has me on…it’s working so far. I read these stories and look at the pictures and it scares me and makes me have empathy all at the same time. I cannot imagine functioning or trying to, on a day to day basis. I remember how I felt in my flares but to have that pain continually…….it’s beyond words!!!!!
    Thank you sooo very much for having this website that we can come on to get information AND support too. Blessings to everyone!!!

    Reply
  • November 3, 2012 at 3:53 pm
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    I just want to thank both women for sharing their stories. I was diagnosed finally last December and am in another flare and throwing a small pity party for one. It helps to know that I am not alone nor fighting this war alone. Thank you for all that you do and bringing hope to many.

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  • November 3, 2012 at 4:20 pm
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    Oh My! I just think my feet hurt! Bless you!

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  • November 5, 2012 at 8:26 am
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    It’s so important that you keep reminding people to keep looking for a good rheumatologist who will listen and work with you. I was fortunate to have an internist who picked RA up immediately with a very high blood test and insisted I see a rheumatologist right away. (I was in the middle of moving to a new state so he could not recommend anyone.) The first rheumy I went to sent me for OT, had custom braces made for my hands, and kept insisting he could give me shots in my knees (my knees were not involved at the time). He also xrayed all of my joints which the orthopedic guy said showed RA. Yet, this doctor kept avoiding diagnosing RA and kept telling me “you don’t want to have RA.” Of course I don’t, but if all tests say I have RA, let’s treat it early and try to get it under control. A new internist and the orthopedic doc strongly recommended a second opinion, which I am very happy I did. I am on mtx, remicade and prednisone right now and feeling a lot better. I depend on your newsletters to keep me up to date, and also to be motivated to keep going and do what I can still do before I lose it (I am 73). Keep up the good work.

    Reply
  • November 11, 2012 at 5:00 pm
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    It started in my feet looking back, I just thought I had VERY wide feet. I was not able to wear my beloved… heels any longer. Then, I was Bullied out of my 15yr. position at a physicians office. I was one who almost never called in sick(no matter how sick I was with ALL my autoimmune disorders)to having to turn in FMLA paperwork, thinking that would secure my position. At this time she said,”you cost us money”. I only took one day off a week to rest and have more tests done. In between tests I was FIRED… both tests uncovered two more health challenges that are BOTH precancerous in my esophagus. I have since learned a lot about “bullying” and “mobbing”. The practice administrator planed to turn my co-workers against me. She did this(one of the many things she did) by giving them some of the moneys I had earned by a previous 15yr. policy. She told them, not me, so needless to say when I found out I was rather up set and said something, to then, be screamed and yelled at. She had told me one day I looked nice, these were VERY comfortable clothes so I though I would get more. I had them hemmed and also had to get new flats because I could no longer wear my heels. Then she comes up to me and says” your not keeping up with the competition,you need to step it up”. Pointing at my attire… it would have been nice to hear,something like, sorry you can’t wear your heels anymore,that you so dearly love ! She did things like this numerous times and for many more unjust reasons ! I’m sure there are many other people on here who have also been treated in a similar fashion,to all of a sudden, find themselves …Terminated on trumped up charges as an excuse to get rid of chronically ill employees !?! BTW..I’m much better off not working for/with these unscrupulous people and am employed (VERY) part time with very kind caring people !a

    Reply
  • November 21, 2012 at 5:16 am
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    Is there anything so cruel and unusual punishment as trying to get the pills out of the prednisone pill packs for those times high dose is needed? Why after 12 years of this I forget to instruct the pharmacy to provide easier access is beyond me. Maybe by the time I give in to treat the flare I am not thinking clearly. No problem with maintenance low dose – they are in a NON childproof bottle. The pharmacy has it in my record not to use childproof lids.

    Reply
  • November 29, 2012 at 9:45 pm
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    i started juicing kale, spinach, beets and any healthy vegtables i have in my refrigerator, Beets are the second ingredient in Nopal Juice advertised on TV and looked it up on wikepedia, they contain betalins wich are antiflammatory fighters, feeling much better two weeks now, i use the ninja mixer/blender i bought at costco about 100 dollars, i dont seperate fiber for the juice as traditional juicesr work, my results are good going in two weeks,twice a day my email is gkruger2000@cox.net, new to this blog i hope my commments help soomeone helps, i intend to keep it up

    Reply
  • February 27, 2015 at 10:53 pm
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    Over time, your weight will drop, your energy levels will increase, and the mental fog lifts ‘ you’ll feel
    10 years younger and, you’ll be able to enjoy life more completely.

    Provide a pain management program that includes physical
    and psychological help.
    Using this back exercise technique, the first thing that a physical therapist does is to look for the patient.

    Reply
  • November 3, 2016 at 6:27 pm
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    Can’t believe that I’ve been dealing with this for over 10yrs and only now I’m seeing this blog (I think).
    My feet look like that for the past 3yrs or so. So much has changed in the past 4yrs… turmeric/curcumin has been a life saver for me. I hope most of you have found solutions that has worked for you.

    Reply
  • February 13, 2017 at 2:15 pm
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    An ERISA lawyer can help you fight your long term disability decision. Unfortunately the lawyer will take at least 33% but that is better than nothing. Also – you can apply for social security, it may take a few appeals, but you can get a lawyer to help with that too. Best of Luck, I am fighting similar battles.

    Reply

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