My Poor, Ignored Feet

My Poor, Ignored Feet

The common picture of RA seems to be the damage that people have in their hands.

For me, the most visible damage and deformities come not from my hands, but from my feet.

I recently saw a Facebook post of someone in an RA group sharing that they were having several toes amputated due to damage from RA.  I had never heard this before, but it kind of scared me, knowing the way my toes look and feel.

I mentioned my feet to my rheumatologist, but she has only really looked when I haven’t been wearing socks and shoes.

I did make it a point to show her the nodule on the big toe of my right foot, but I haven’t really addressed the other issues that are happening with my feet, with her.

At my most recent appointment, however, she could clearly see the indentation of the nodule through my sock.

But I worry.  My feet are probably the most covered up part of my body, and yet, what you can’t see, can obviously hurt you.

I wonder if I’m harming my feet even more by hiding them away.

But it’s also scary because I see so much about RA damage in the hands, and much less about RA in the feet.

And I wonder why that is?  Is it just that our feet are covered most of the time?  Or is this something that people in the RA community really don’t talk about?

It’s scary when the few things you do hear are of people getting their toes amputated.  I’ve never heard of that happening with the hands due to RA.

So either someone is pulling one over on me, or this is a possibility, and nobody talks about it.

I know a lot of people are ashamed about the way their hands look, due to RA.  And I have to say, I feel the same way about my feet.  But we shouldn’t be ashamed.  We should share and support each other.

This community has made feel not so alone countless times, but as far as my foot issues go, right now I feel like I’m one of a few dealing with significant foot deformities.

Does anyone else have foot issues?  I’m talking nodules, crooked toes, whatever.

And does anyone else feel that the damage in their feet is much worse than the damage in your hands?

If you all really want, I can provide you with photographic evidence of my feet.  But I’m not a big foot lover and I wouldn’t want to traumatize someone that feels the same way.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (49)
  • 1vmdy6s
    2 years ago

    My name is Brenda
    If you are having problems with your feet or ankles,MAKE YOUR DR LISTEN TO YOU!! I have had RA since 2011. It started bothering me in my right ankle and thats when I got tested. In May of this year,2016 I started hurting in my right foot worse than normal. I brought it to the attention of my family dr and my rheumatologist. They ordered a test to see if I was having a bloodcot issue. Came back with some issues but not enough to worry about. So they both just blew me off when I kept complaining. I decided to go see a podiatrist to get some answers. I had a broken ankle!! Two bones were broke and I had been walking around on it in pain so great I can’t even describe it. I was literally walking on the side of my foot.
    Podiatrist referred me to a surgeon in St. Louis,Missouri. When he looked at my xrays he refused to do surgery. He said that with the way the arthritis was I would be at risk of having the foot amputated if they did surgery and it didnt heal.I had to quit my job,file for disability and now here it is holiday time and I’m sitting here with no income other than my husbands disability.So I say MAKE THEM DOCTORS LISTEN TO YOU!! My problem could have been solved if they would have just listened. All they would have needed to do was a simple xray but neither dr offered that. I am just sitting waiting for it to heal back in one big mass of bone,guess we will see what happens…..

  • Erin Rush moderator
    2 years ago

    Thank you for sharing, Brenda! I am so sorry you had to needlessly go through all of that. Your story really drives home how important it is to have physicians that listen to you. Thank you again for sharing with the community. Best, Erin, RheumatoidArthritis.net Team Member.

  • jopilc52
    2 years ago

    Glad to see I’m not alone. My left foot hurts all the time, more so after a day out. Unlike others I’ve read, my pain is on the top of my foot and my Dr says I have a cyst on top that is causing me the pain. Could it be a large nodule instead? Who knows, I just have to break down and add another Dr to my list.

  • kgirl64
    2 years ago

    I have way more problems with my feet. I have neuropathy in both feet. Constant ankle pain and burning. The doctor always says exercise but its hard when you need your feet to do it. I am so glad there are others who have these problems also.Like other people said, the rheumatologist does not seem concerned. If it weren’t for foot pain I’d have no pain at all.

  • gravyswimmer
    2 years ago

    My two little toes are gone. The dr. said the bones were disconnected and overlapping each other.He could fix it,but they might end up doing the same thing again.

  • melody123
    2 years ago

    When I asked my mother who had RA where it started and she said her feet I am glad I did. Mine started in my feet and ankles and neck. My hands didn’t hurt at all. For two years I kept buying new tennis shoes every three months for support. When I got a bunion I knew it was time to go to the dr. Fortunately they had remicade and started me on it. It took about 10 years to show up in my hands and really they look normal. The biologic has kept most joints at bay. I’m still doing well and pray for a cure. I couldn’t understand all the questions about my hands when it was my feet that were hurting.

  • Kacey
    2 years ago

    I don’t have an visible deformities in my feet but they still give me a lot of trouble. I have to be super careful with what kinds of shoes I wear and lately I’ve been having problems where when I’m working out my feet will start burning and cramping and going numb with certain activities. But I agree that feet don’t seem to get as much attention as other aspects of RA

  • Lauren Tucker moderator
    2 years ago

    Kacey,
    Sorry to hear your feet give you so much trouble as you can see you are not alone.
    We hear you when it comes to finding comfortable footwear. We have many others that understand this challenge who may offer you some support.
    I have to commend you that it is wonderful that you push yourself to work out despite the pain and cramping. I thought this article on footwear may be beneficial: https://rheumatoidarthritis.net/living/do-you-have-a-favorite-pair-of-shoes/. Please reach out anytime, we are glad to have you part of the community!

    Best,
    Lauren (Community Manager RheumatoidArthritis.net)

  • Norreen Clark
    3 years ago

    Leslie, I have had RA for 36 year and I’m only 63. I have 4 nodules on my left foot not counting the ones on the bottom. Some medication for RA will give you nodules. I have some on my right foot and right hand. As long as they are not rubbing causing pain and also find out what medication. will get rid of them. Keep the faith.

  • Kami
    3 years ago

    I had the worst troubles with my feet. My toes were drifting, hammered, and I was walking on bone as my toes didn’t touch the ground. I have had both feet reconstructed. The best surgeries. My right foot still gives me troubles. I had an artificial joint put in my big toe and a couple of years ago it broke and worked it’s way out. Ouch!! It was taken out and my toe slightly fused. I can walk barefoot, something I never could do before. U can wear pretty saddles in the summer and shoes other than tennis shoes all the time. I still have to make sure they are supportive and have good cushioning. But it was well worth having the surgeries. If you are having troubles, talk to an orthopedic surgeon. There are things that can be done to ease your pain!

  • beaut
    3 years ago

    The first symptoms I had were in my feet and hands. It often feels like I am walking on sharp rocks; the most helpful thing I have found is using the cushiest insoles I can find with thicker, cushioned soles on my shoes. Standing or walking for long periods of time is painful and I know I will pay a price the following couple of days. I have had several excrutiationg bouts of plantar fasciitis that required multiple cortisone shots. Recently my ankles have joined the party! Oh yay! So far just one injection but I can foresee many more in my future.

  • Nanci Burns
    3 years ago

    I also have grown big knots beside my little toes. Every doctor I’ve been to just ignores them.

  • alyce j kowal
    3 years ago

    I have a lot of pain at times with my left foot. I had a break in my left foot shortly after being diagnosed with RA. I wore a boot for 6 weeks and the Doctor said the bone was healed.
    I still had pain and walked with a limp at times.My Rheumatologist does not comment.
    I guess feet aren’t important.
    I soak my foot and sometimes I use heat.
    As with most pains with RA most treatments are temporary.
    Still thankful I can get where I need to be.

  • pugpen
    3 years ago

    So glad to see the foot topic! My RA started in my feet so many years ago. It’s miserable & I would be a wealthy woman right now if I had all the $ I’ve spent thru the years on shoes, podiatrist,orthotics,& inserts.And really none of them have worked for long. For a while only Birkenstock’s would help, then Croc’s, right now it’s Spenco & Vionic (QVC) and Brooks tennis shoes. I’ve decided to just keep all these darn shoes because my feet change periodically, so then I switch up again. Frustrating.I’ve developed neuropathy in both feet and sometimes they look angry red and HOT to touch & so painful. I used to wrap them in cold ace bandages which felt great at first but then the icy cold started to cause them to cramp, so I stopped that. Now I’ll rub them with a peppermint lotion (Ulta)which cools them without cramping.My left big toe is totally unbendable, both little toes are a little out of position andI have a few toes that are curling under now & a nodule on one toe. I guess the thing that bothers me the most though is the big lump on the ball of the foot area.Sometimes it’s so swollen that my toes don’t touch the floor. The best help I’ve found for all this neuropathy pain is Cymbalta, without it, I can’t walk.I’ve been on it for about 15 yrs. I’m happy to have found fellow-sufferer’s, someone who REALLY understand’s!

  • Kami
    3 years ago

    Have you tried Alegria shoes? They are shoes most nurses were. I bought my first pair a couple of months ago and they are absolutely fantastic. Very cushioned and supportive! They are pricey, but we’ll worth it! And soo many cute styles. Go to Alegria.com to check them out.

  • Kimberly
    3 years ago

    I have just recently been experiencing more and more pain and discomfort in my feet. I work in a laboratory setting, so the option to wear any type of open shoe is not even there. I was thinking about going to one of those custom orthotics places to get it taken care of, but this article is making me wonder if I should address it with my rheumatologist. It’s nice to know, and sad to know, that I’m not the only one experiencing these problems. Thanks for the share!

  • Kami
    3 years ago

    Get a referral to an orthopedic surgeon. I’ve had both feet reconstructed and the results are amazing. Also look into Alegria shoes. They are soo Worth the money!

  • Kathy P.
    3 years ago

    I have problem with my feet, especially the left foot. The proximal metatarsal joints (I think that’s the official definition)are deformed so much, it’s like having a rock taped to the bottom of your foot. The toes don’t really touch the ground, and I’m getting hammer toes. It’s difficult to keep my balance because my toes don’t touch, which can make me seem like I’m drunk. Orthotics actually makes things hurt worse, and I’m tired of spending 100’s of $$ on these useless things. Traditional Crocs are my best friend because they tend to conform around my lumps, but they’re not made for hard outdoor use. It’s nice to see others have found some ways to deal with the issues. Maybe a podiatrist is in my future!

  • Darla
    4 years ago

    Leslie, in answer to your question..The herb filled sock/booties label reads
    “Aroma Comforts.” Cannot remember where I purchased them. Easy to use
    smell wonderful.

  • Leslie Rott moderator author
    4 years ago

    Thanks, Darla!

  • Glenda McDonald
    4 years ago

    Thank you sooo much for telling us about your feet! I thought I was going crazy when my feet started going nuts about 8 years ago! Drs just said it was part of having RA! It turned out to be neuropathy!! Now after reading some of the other replies to your article, I know I’m perfectly normal! (Well other than having RA that is)!! Anyhow, thank you and everyone else here on the forums! I wait for each issue from Rheumatoid arthritis.net!!

  • Leslie Rott moderator author
    4 years ago

    Glenda, so glad you found this article helpful. You are far from alone! Leslie

  • Darla
    4 years ago

    My feet were the first sign of RA. When I flare, it feels like walking on sharp
    rocks. Step out of bed and know it’s a pain day. I have used a foot bath, and
    lotions to help. Also found a pair of herb filled socks you can heat in the micro.
    Use Orthodics in my shoes. Elastic laces help. Have a cushy mat for my shower. Have never heard of amputation of toes. Surgery, yes.

  • Leslie Rott moderator author
    4 years ago

    Darla, can you say more about the socks? Leslie

  • Jan
    4 years ago

    Thank you for bringing this up! It’s obvious from the posters that this isn’t uncommon yet why does it get so little attention from rheums? I’ve had RA for over 30 years and my rheumatologists (for various reasons I’ve had 4 over the years) have yet to ask to look at my feet. My RA actually presented in my great toes and my feet are my most affected joints. I’ve had cheilectomies on both great toes with removal of bone spurs and cleaning out of the joints. I have hallux limitus so can’t wear over a 1 – 1 1/2 inch heel (not that I would anyway) and a fusion is in my future. Most days it feels as if I’m walking on rocks and I wear custom orthotics. I have repeated flares involving my toes which require cortisone shots in the joints. Several toes are misshapen and one is permanently discolored. I spend more on my shoes than I do my clothes. Only wide toe boxes. The good news is there are a lot of brands now that are cute and stylish that are also supportive and comfortable, some so supportive I can wear them without my orthotics. I recently developed neuropathy with pain, tingling, burning, and sensitivity to hot and cold. Thanks to the poster who suggested a neurologist. I still exercise and walk but I can’t stand for long periods of time. It truly affects quality of life.

  • Leslie Rott moderator author
    4 years ago

    Jan, you are welcome. I am so sorry to hear about all of the trouble you have had with your feet. I think you might be right that adding another type of doctor, whether a neurologist or a podiatrist is probably the best way to handle feet issues since most rheumatologists don’t seem to be too concerned about it. Leslie

  • GingerS
    4 years ago

    I was born with splay foot deformity. So all my life I have delt with foot pain,aching,toes and toenails that are crooked. But with the onset of RA. I developed idiopathic neuropathy in my feet and hands. The pain,numbness, tingling, hot and cold sensations is an every day event. One of the first places RA showed up was in the lower joint of my right toe. The family Dr. called it gout. What it actually is a swollen synovial sack. I now go to a podiatry surgeon for my feet. He clips my nails and inspects my feet for problems. My sympathy goes out to anyone with foot problems. I can still walk thank heavens. But time on my feet is very limited.

  • Leslie Rott moderator author
    4 years ago

    Ginger, thanks for mentioning the podiatrist. It seems that rheumatologists aren’t great and dealing with this, so I might just have to see a podiatrist myself. Leslie

  • Wren moderator
    4 years ago

    So glad you brought this up, Leslie. I’ve had awful pain in my feet from the beginning, 28 years ago, but have never been able to get any doctor to pay much attention to them. Fortunately, no deformations (so far), but I do have one small nodule on the outside of my right heel. Like you, I wish our docs would be more helpful with foot problems caused by rheumatoid disease. It’s nearly universal, and it directly affects quality of life, even if we can still walk.

  • Leslie Rott moderator author
    4 years ago

    Wren, you are right. It’s a huge quality of life issue. I wonder how we can make rheumatologists more concerned about these issues. But I tend to think that most doctors don’t even ask patients to take off their shoes or socks, so how would they know about what’s going on underneath? Leslie

  • Andrew Lumpe, PhD moderator
    4 years ago

    My feet and ankles were the first joints impacted. Thanks for drawing attention to these oft covered parts that are so often affected by RA.

  • Leslie Rott moderator author
    4 years ago

    Andrew, you’re welcome!

  • Blanche
    4 years ago

    I too am glad you brought this up, I have totally been ignored about my feet by my rheumatologist. It’s like well you may have to see a podiatrist, nothing more. When I mention my feet I literally have to take my socks off to show him and he says oh looks like a bunion. Well I’m almost 60 years young and have never had a bunion on either side of my feet. These so called bunions are on the outside of my feet by the little toe. Anyone have that issue? Also I have gaps between my 3rd and 4th toe now that wasn’t there over a year ago. Had an episode last year where getting out of bed one morning as I stepped down on my left foot the pain was so extreme I couldn’t walk on it, got sick to my stomach, passed out and could not keep my leg dangling. I had to keep my foot elevated. Since then I have had the seperation. Now I have nodules coming up on my 4th toes as well and they actually throb and hurt just like it’s in the bone itself. Very painful to walk on the bottom where the ball of your foot is and the toes. Anyone else have this problem or anything close to it?

  • Leslie Rott moderator author
    4 years ago

    Blanche, sorry to hear about the problems with your feet. You can either put your question out to the community on the Facebook site, and/org talk to your doctor. Leslie

  • Mary Weisgerber
    4 years ago

    My feet are a mess, bunions, crossed over toes!I have had nerve damage and lost muscle mass in my feet. All shoes have to be wide or at least have a wide toe box. Way to embarrassed to wear any kind of sandals, let along not have pain from wearing sandals. Not much pain, just depending on the shoes and area that I am walking on.But the great news is I still can walk!

  • Leslie Rott moderator author
    4 years ago

    Mary, sorry to hear about the issues with your feet. Glad you can still walk, though! Leslie

  • jan curtice
    4 years ago

    My feet were the first part of my body that showed problems. I’ve had surgery to correct some of problems … nodules, spurs. So far, I’ve not had to return to the podiatrist in several years. I’ve wondered if one of the reasons the feet are ignored is because there isn’t a standardized joint assessment for them like there is for the hands or other joints. Thankfully, my rheumatologist always asks about my feet, not just my hands and other joints. When the pain is bad, I place a lidocaine patch across the top part of my foot and wear diabetic socks (usually sleep this way). The foot bone is thin, so the lidocaine absorbs quickly and is carried to the rest of the foot nooks & crannies. This helps me alot. I also go to the spa for pedicures … not necessarily the full-out treatment, my feet can’t always handle that. However, I have difficulty keeping my toenails clipped, cleaned, and from becoming in-grown. One thing I know, if my feet aren’t happy … the rest of me might as well throw in the towel, my whole body isn’t going to be happy.

  • Leslie Rott moderator author
    4 years ago

    Jan, you have mentioned some useful tips that I hadn’t thought of, so thank you very much for that! Leslie

  • jan curtice
    4 years ago

    One thing I forgot …. my NEUROLOGIST provides most of the treatment for my feet. Even though I do not have diabetes, I do have have similar neuropathic pain.

  • Sharon Fritz
    4 years ago

    My feet feel very different than my hands. They are not what they used to be. My balance is off, they rock when I am taking a shower and make me feel like I am going to fall. They just do not feel the same as before. The toes are going a different way. The one next to the big toe is worse of all. They get red spots on them in my shoes as they sit different then they used too!

  • Leslie Rott moderator author
    4 years ago

    Sharon, sorry to hear about the issues with your feet. Leslie

  • Lindsay
    4 years ago

    My feet are actually the first part of my body to show permanent damage, in the form of heel Spurs and “extra bones”, but my rheumatologist just tells me to go to a podiatrist if it bothers me. I used to think he decided it didn’t have to do with my arthritis. I have read up on these individual conditions and now know they are common among RA sufferers. A podiatrist can make custom orthotics to make your feet more comfortable, clarify what is causing the problems in your feet, and recommend particular therapies to help. My rheumatologist doesn’t treat individual body parts, but the underlying disease.

  • Leslie Rott moderator author
    4 years ago

    Lindsay, thank you for sharing your experience. Looks like I may need to get a referral to a podiatrist. Leslie

  • Merry
    4 years ago

    Leslie
    For me I also see a podiatrist because I’m diabetic and every glare starts in my right ankle. It swells to 2-3 times it’s normal size and gets red. I’ve had nodules appear on the shin bone and the RA dr. Does an increase in medication and they gradually dissappear. Before you need foot surgery etc. Check around and find a good foot doctor.

  • Leslie Rott moderator author
    4 years ago

    Merry, thanks for that advice. Looks like I should get a referral to a podiatrist. Leslie

  • Josephine LaCascia
    4 years ago

    I too have severe rheumatoid arthritis and both my hands and feet are deformed. Also have neuropathy of feet and lower legs which now is weakening my ability to walk. Do not have diabetes, so I do believe my feet a are deformed because of RA. Have been told not to wear closed shoes only sandals and even with sandals I need to make sure my feet fit properly so no rubbing of the sides of my feet. Have a bunion on the left foot, which just recently bled and is now being taken care of. My hands and feet are always very cold. Have been told to take warm soaks with Epsom salt and that seems to help the tingling and numbness temporarily. Glad you mentioned this in your article.

  • Leslie Rott moderator author
    4 years ago

    Josephine, I have not been told to wear only sandals. I know that my feet do feel much better than they can breathe. That’s a little difficult to do all year, though, since I live in New York. Leslie

  • Sharon Fritz
    4 years ago

    My hands and feet, also the end of my noise gets so cold.

  • jdaph
    3 months ago

    yes,, my feet have developed nodules in the past three months, and my mother , who had undiagnosed R.A. had the most horrible looking feet Ive ever seen in my life,, she had hammer toes, crooked toes, and bunion, had many many unsuccessful surgeries, and suffered her whole adult life, I cannot be on my feet nearly as long as I used to even a year or so ago,,, so yes,, R.A. has a huge impact on ones feet.

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