Foot Pain Helped Me Get Diagnosed With AxSpa!

By Jes Hojsan

2 min read

When we think about foot pain, we often don’t think of it being a common AxSpa symptom, but for me this was one the main symptoms that started to put the puzzle pieces of AxSpa symptoms together and that eventually led to my diagnosis!

It started several years ago

My foot pain started a few years ago. Each morning when I was finally able to sit up in bed, and get my feet planted on the floor I would feel this INTENSE pain in both feet. It truly felt like my feet (especially my right foot) had broken bones, or had a trash truck drive over them while I slept.

At times, I limped

I would hobble around the house, limping at times because it was so incredibly painful. But like the rest of my stiffness and joint pain, after an hour of movement the pain would improve, only for the stiffness in my feet to return if I sat down for even 10 mins of rest. The painful cycle would start all over again. I bought a new pair of running shoes for running and walking. I invested in Crocs to use inside instead of floppy slippers. Nothing seemed to make a difference!

To the doctor I went

So I made an appointment with my family doctor to have it checked out. My family doctor examined it and sent me for X-rays, which ended up coming back normal. But along with my other symptoms that I was having at that time, like fatigue, joint pains, and morning stiffness, my doctor decided that it was time for me to see a rheumatologist.

A diagnosis

Fast forward to being diagnosed with AxSpa, and starting my first biologic, Cosentyx. After I was on the medication I started to feel my symptoms improve, and that included the intense foot pain. And now, thankfully with the help of the right biologic for me, my foot pain and all of my AxSpa symptoms are well managed!

This is something I haven’t come across as a common symptom of AxSpa, so I wanted to share my storey as my foot pain was a huge contributor to seeing my doctor!

Has anybody experienced foot pain? Where in your foot does the pain happen? Have you ever brought it up to your rheumatologist or family doctor?

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

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Jed Finley Moderator & Contributor
Jes, (Btw, auto correct really fought me on not typing “Jed”) I saw your article linked and it hit me. While foot pain is not “one of my symptoms” I’ve been moving the last 2 weeks and all the walking (and two pieces of furniture rolled over my foot by myself) my feet are hurting so much! I don’t know how I’m going back to work tomorrow. Foot pain is not a symptom that gets much credit, but it is indeed legit!
MegC Member
I have been diagnosed with Axial Spondylitis (2 years ago). My hand pain was what got me diagnosed. I suffer from pain that moves from one part of my body to another. At the moment it’s the top of my feet, keeping me awake, swelling and making me limp. It’s worse at night. Before that it was Achilles tendonitis in my calf and before that the pain in sides of my feet. It is always my hips and buttocks too. Valerian helps me sleep (so does Night Nurse- I’m in the uk). I’ve not moved onto biological yet- is it worth it? I don’t feel like anyone takes my pain and fatigue seriously. Meg
1. Nadine Cruz Member
 Hi Meg thank you for sharing your journey with us. So sorry you are experiencing this type of pain, I myself have been through similar pain in my hips and buttocks and constant pain throughout my body. Everyone reacts differently to biologics what may not work for me may work for you and vice versa, I would recommend consulting with your doctor to go over which options are best for you. Wishing you all the best and better days to come hang in there you got this 💪🏽💙 Nadine (Team Member) 
2. Rebecca C Moderator & Contributor
 <inline-mention username="MegC" user-id="6706420"/> - here is a link to an article we have about biologics, and why they are important once diagnosed with spondyloarthritis. I have found it has slowed down the progress of my disease by managing to lower inflammation, thus less fusion and damage to my spine, pelvis, and joints. I sure hope you have a rheumy who can discuss whether biologics are appropriate or not at this time. You say you feel no one is taking this pain and fatigue seriously - I hope you get the chance to read some articles here and advocate for yourself in the doctor's office - maybe they will start hearing you. https://axialspondyloarthritis.net/treatment/biologics-biosimilars https://axialspondyloarthritis.net/living/collaborate-doctors Hoping this helps. Rebecca (comm advc)
Lisa Marie Basile Moderator & Contributor
I have one toe (my big toe) which is permanently painful and popping. My doctor said it was arthritis for sure. So, I don't know! My hands hurt a LOT, a though the tops are stiff like a sheet of bone. I am so glad you got the diagnosis and care you need. How do you feel now?
Julie Vallortigara Moderator & Contributor
Hi Jes, Thank you for sharing that! I totally relate to your story!! My AxSpa was diagnosed after a flare in my feet, first locally in toes called dactylitis (or sausage toe) which is quite typical of AxSpa, and then the flare did spread to the top of my feet. When I was stepping during that flare, it was like walking on fire... I think having arthritis symptoms in feet is more common than we think, it's not well know by the doctors to think AxSpa when they see such symptoms. I had sign before as well, with Achille's tendon inflammation. And what you describe with your pain in your feet first in the morning when going out of bed, that was me with my Achille's. After hours of lying in bed and not walking, that pain putting my foot on the ground was very intense, until I was walking enough to ease the pain a bit. It's very important to raise awareness about these symptoms as they are part of our condition and can really help the diagnosis 😉 Take care, Julie.
1. Lisa Marie Basile Moderator & Contributor
 <inline-mention username="Julie Vallortigara" user-id="2107984"/> Hi Julie! I actually haven't paid much attention to literature about the feet, so this is very interesting. I'm going to spend some time digging into dactylitis (aka sausage toe), since I have one of my own sausage toes, haha! It's been there for YEARS. Just swelling and pain. Thanks for this. 
2. Julie Vallortigara Moderator & Contributor
 <inline-mention username="Lisa Marie Basile" user-id="2108259"/> Hi, I am glad my experience can be helpful to you. Take care and Happy New Year 😀 Julie.
Bart Cornelissens Member
I'm sorry to hear you have so much pain. And believe me, I fully understand! 😉 Do you also have pain in other areas (such as wrists, elbows, shoulder, knees, hips, chest, buttocks)? I have been diagnosed recently with nr-axspa but also want to challenge the fact of having enthesitis (or pheripheral spa). On my side, my feet were also the first indicator something was wrong, closely followed (within 6 months) by my wrists and the other parts of my body). It took me 5 years before someone took me serious, and in the meantime it became more and more painfull to move because of my feet and my hips, where the disease progressed a lot. Wishing you all the best!
Nabila Member
I have just been diognosed this september I can't stand on my feet too long. When I wake up my feet feel like I have been on a long walk they are so painful and sore. When I get put of bed I am trodding on them. Mild sacroiliitis showed in my mri but for the hospital to keep saying mild to me I feel worse than that and they won't start me on biologic even though 3 nsaids haven't made me feel much of a difference. They think the foot pain is because I have flat feet. Hoping everyone with this can get the right treatment to help
1. Rebecca C Moderator & Contributor
 <inline-mention username="Nabila" user-id="4277447"/> I see this a lot in our community - because we have been multiple diagnoses, it seems one is treated and the others are put to the wayside. How are they treating the pain from the "benign hypermobility and flat feet"? If how they are treating you is not adequate, please continue to push on about the spondyloarthritis diagnosis and get appropriate treatment. Here is a link to many therapies and treatments that is very informative. Sending you strength and healing vibes ~ Rebecca (community advocate)
2. Rebecca C Moderator & Contributor
 <inline-mention username="Nabila" user-id="4277447"/> <a href='https://axialspondyloarthritis.net/treatment' target='_blank'>https://axialspondyloarthritis.net/treatment</a> ~ Rebecca
Rebecca C Moderator & Contributor
<inline-mention username="Jes Hojsan" user-id="2107853"/> - Thanks for sharing your experience with us here in the AxSpA community. I, too, suffer from horrible feet pain from spondyloarthritis. My Achilles feel as if they've both sclerosed and are inflexible, and every small bone in my feet feels as if they are fractured. One ankle is fused from an injury during a performance while in college, which has been replaced 3 times. Both feet have severe arthritis visualized on x-rays. Walking more than 20 minutes puts me back 2 or 3 days every time. At times the pain is severe enough I reach for my cane. I understand ~ hoping you have found relief with treatment for your feet pain and that soon they find a cure for this inflammatory arthritis. Best of wellness. Rebecca <img src="/content/images/2021/10/21/b27efcd47deb84c526af108b3f6bd1e1_medium.jpg" alt="Happy Feet" class="uploaded-image"/>

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