Welcome Badfeet! Do your feet hurt?

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Hi, @Badfeet42, and welcome!

Not a long message, but I want to say hi and tell you that I’m so glad that you are working on getting help for your pain. I’m wearing the “ModSupport” hat right now, but I’m @Seenie (click on that to see my profile) and I consider myself to be a one of the local feet experts here. :nerd_face:

We have great discussions, and you can find a lot of them by using the search engine near the top right of your page:
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In fact, why not try that feature with the keyword “feet”?

Jump on one one of our discussions, or start your own. We’re just glad that you found us!

Seenie

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Yes my feet hurt! They are never predictable in their pain. It comes and goes. It has zero bearing on if I worked or didn’t or if I wore shoes or didn’t. If I complain to the doc, he says neuropathy. But it can literally come and go during the same evening. It normally starts at night but this is the most debilitating issue I have. Anyone else?

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My doc thought for a while that it was neuropathy too. Then she abandoned that theory. Numerous x-rays showed nothing, until several years later, an x-ray showed joint damage all over my mid-feet. Of course! Inflammation doesn’t show on x-rays, but damage from the inflammation does. And by that time it was too late.

Has your doc said anything about plantar fasciitis? That’s another diagnosis that comes up, and did for me. But my pain was much less localized than PF. In retrospect, it was probably all the ligaments in the foot that were inflamed, not just the big ones on the bottom.

I remember lying in bed in tears: my feet hurt so bad that the weight of the duvet on them was torture.

Have you managed to see a rheumatologist yet?

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You are so nice to reply! This is my first post in this group. I am seeing a rheumatologist and she is new to me but she is the fourth rheumatologist I have seen. She is a huge help and the first to try a biological drug (humera) which I am now in the midst of waiting for an approval for. Currently I’m taking methotrexate. I have been diagnosed as having planters and I do have arthritis in my feet but this pain feels like my feet will explode sometimes. It’s crazy.
My doc said to put them in ice water and one is certainly desperate to get up at 3am on a winters night to put their feet into cold ice water. I did it. It does work but there should be some way to find out why this happens. I have noticed it is better since starting methotrexate. My lower spin is riddled with arthritis and it has occurred to me that it might be nerve entrapment.

You said it was too late for saving you feet, what do you mean? Are you still in pain forever?

(full name removed by moderator for member safety)

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Nice, Macy? That’s what we do around here! And as you get to know people you can support them too.

And @Badfeet, I am SO glad that you are seeing a rheumatologist who is taking you seriously. That is going to be your ace in this game. And she’s trying to help you get on a biologic. BINGO. No drug is going to solve all your problems, but the right meds will give you crack at living your best life with a minimum of disability. It’s a matter of finding which treatment is going to do that! Sounds like you’ve got a rheumie who’s a keeper.

I know what it feels like to have EFS. (Exploding feet syndrome, LOL) And it’s a problem, because some rheumies are only interested in finger joints. My first rheumatologist ignored what I told her about feet. I fired her, but too late.

Yes, it’s too late for my feet. My inflammation is gone, so they no longer hurt when I’m off them, I’m no longer scared that they will explode. But the PsA damage has left them deformed, and very painful to walk on. My arches are gone, and joints stick out where they shouldn’t (like underneath). With properly chosen footwear and insoles, I can walk and stand reasonably well, although not for as long as I’d like. For me, a tough day is 3-5,000 steps on my fitbit (doubt I will ever be able to do much more than that). After that, my feet are done. Owee. But they recover.

I have a very limited range of footwear: croc flipflops for standing and minor walking in the house. Ankle boots for, say, shopping or a hospital visit. High cut sneakers in and around the house, especially in summer. And of course, it takes a fair amount of shopping to find the brands that use a last that fits me. Guess what, none of those brands are cheap. And of course I have to have accommodating insoles. I rip the original insoles out of the sneakers, and replace them with ones that suit me better.

I cannot walk or stand barefoot. My crocs flipflops are by the bed. I shower using a seat.

The foot surgeon said that there is so much damage in my mid foot that the joints cannot be fused, because there would not be enough room for all the screws. Removing the bones and replacing them with metal parts or cadaver bones might be possible, but it would mean six months of being non-weight bearing, and a high risk of failure. (I didn’t even ask what would happen in that case.)

I have two rheumies, both teach. Both tell their students never to ignore foot complaints, because you do not want your patient to end up like “this lady”. That’s me! Still, I manage, and I even look halfway normal.

Then there are the “minor” (that means fixable) problems I’ve had: two knee replacements, one hip replacement, and a spinal fusion. The other hip will be replaced one of these days. Those fall into the “poop happens, get it fixed” category. But it’s the feet that cause me grief. Because fixing them is not really a possibility.

Please don’t apologize for insisting that your feet need to feel OK to you. They are so important to your well-being. Insist they get looked after. BTW, have you used the search engine to search for “feet”? Lots to read there.

S

PS after posting, I found this old thread of mine.

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The fact that the methotrexate seems to be helping us strongly suggestive it is related to inflammation and arthritis- even if neuropathy is present it’s for many of us just secondary. So the good news then is that if the Humira works for you, you may be well able to say goodbye to the ice baths. So glad to hear your are on the path to finding an effective med.

When I had bad symptoms in my feet, it was always transient and migratory - could move around and come and go within hours. That led my Rheumy to suggest it was more related to a pain syndrome than inflammation. With hindsight, though, I’m pretty sure he was wrong. It was my ligaments that were inflamed, which actually led to me needing a different shoe size and as it progressed having fallen arches and needing special insoles to walk any distance.

Unlike Seenie, mine didn’t seem to do substantial damage to the harder tissues (bone, cartilage etc) - I had far less time untreated. After around 2-3 years of bad feet, one day my arthritis decided to spare them. They slowly got stronger (I guess the ligaments healed), and returned to their old shape and size. That was about the time I started Humira. Now I like wearing supportive shoes better, but can still do moderate hikes etc without too much pain, and my arthritis has settled elsewhere for the time being.

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Really positive feedback! That’s uplifting. Thanks… I am glad your feet are being left alone from any attack at the moment. As for me well I’m numb from the knee down but about to head to bed and hopefully sleep it off.

xxxxxxxxx Name removed by ModSupport

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The heels of the foot, and toe-nails maybe ugly, but the fissures can be quit uncomfortable at times. As far as brands; I wear Durham for casual shoes, Allen Edmonds for dress shoes, or New Balance for sneakers. They all come in 4E.

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Thanks @seenie for staying at this for so long. Your history gives you so much credibility and who knows how many people have been helped and even rescued…your suffering is not in vain and your sharing is generous!

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Are there typical self tests that we can do to help determine if our feet are just painful or painful and damage is occurring? Not as a replacement for proper diagnosis but are there ways that we can be alerted to probable damage?

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For the fissures, I’ll slather on Aquaphor at least once a day, immediately after the shower, and one more time if I remember. When I have a bad crack I definitely remember. It softens it up really fast, which keeps the pain level down and further cracking from occurring. I think the healing rate isn’t necessarily different, but my comfort level is.

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I am definitely the worst person to answer this. I walked around on a broken foot for a few months before getting x-rays, because apparently I’m a bit too accustomed to foot pain.

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I think it is worth noting that the big difference in my and Seenies story is that she got told to lose weight and live more healthily for 20 years, whereas I, completely due to the help and encouragement of the people on this forum (Seenie being one of the principal supports), got diagnosis and effective treatment within 12 months of onset.

That didn’t stop my feet from hurting a bit, but I suspect it did help prevent damage. Moral of the story being that I really can’t tell you if I would have had damage without treatment- the best thing is to just pursue effective treatment and try to stop it before the damage is done.

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Amos, you are too kind! Much, much too kind. But thank you.

Yes, I do believe that I can make something good come out of the mistakes that happened to me. And to be honest, it still helps me to vent and tell my story. Years of thinking that the doc was right an I was just ocd, whiny and lazy doesn’t disappear by itself.

I always hesitate for a moment before I launch one of my “data dumps” cuz I know lots of people like you have heard it before. But then I decide it’s too important not to tell a newbie. And it’s not too late for @Badfeet and @LittleBitTexas.

Again, thanks for your very sweet words. They mean a lot to me. And all my old and new friends here are very important people in my life as well.

Stay well, my friends!

Seenie

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So very right! And another confounding factor is peoples’ tolerance to pain. What I had should have been treated years before. But my description of it was “my feet are sore”. Kind of like my rupturing gall bladder was “really uncomfortable”.

And we may as well throw in the old “pain control is not disease control” while we are at it! Newbies, think about that one for a bit.

Seenie

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Oh boy, that’s one to ponder. Dangerous stuff!

Seenie

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I do wonder if a high pain threshold comes for many who have long-standing chronic pain.

I have quite an infection in my surgical wound, which wasn’t visible from outside inspection. I sent a photo and asked some questions because it was weeping a little and I knew something wasn’t quite right, but it only seemed uncomfortable to me.

Since then it has come to the surface and “expressed” and from a few comments from docs I have realised what I thought was uncomfortable would probably have been characterised by another patient as quite painful, which is possibly why the surgeon said it looked normal when I gave him the first description. Oops!

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Wow, there’s a thought! (And dangerous!)

Seenie

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It’s an interesting question. It almost seems like it could go either way. Some people clearly get over sensitized. And other people seem to be less sensitive to it.

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Good point. I think I was over-sensitised for around the first three - five years. Then I started to learn a lot about non-drug pain management, and stopped pushing my body so hard, for me that seems to have worked to provide a lot of pain resilience, at least most of the time. I don’t imagine it works that way for everyone though - there is so much out of our control with this disease

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