Painful feet- SLE

Hi, Hoping I am not the only person experiencing this, but I have pain in my feet, particularly soles but overall, when walking. It's like my bones in my feet are collapsing. I'm mostly shoeless, so I can not pinpoint what could be causing the pain. Pain is especially strong when I am shoeless. I'm afraid my doctor will dismiss me, since the symptom may not be common for people with Lupus or on Lupus meds. Thanks in advance for your response.

[nanleighh]

I get terrible pain in my feet when I stand for any length of time in one spot. I cannot go on elyptical Machines or do any exercises where I have to be stationary. I don't know if that helps you. Good luck with your appointment. Nan

[Hidden in reply to nanleighh]

Thank you for responding. My pain comes when I'm off them and I get up to walk. It's so strange.

[nanleighh in reply to Hidden]

When I first started to get symptoms in 2007, I had that same issue. For an entire year my feet hurt so bad when I would sit down and then get up again that I could only wear crocs shoes, because regular shoes just killed my feet. I had a complete work up at that time and was told there was nothing wrong with me except a vitamin D deficiency. I was told it was probably either viral, or a serum sickness for many immunizations I had received. I wasn't diagnosed with lupus until seven years after that. That pain lasted about a year and then went away. I went on a very extreme diet at that time it was like a Paleo diet with mostly lean meats, and vegetables. My symptoms came back again in 2013 and I was finally diagnosed in 2014 after I developed joint pain, severe fatigue, and rash all over my face and neck. I hope you get to the bottom of your issues cause I know it can be very frustrating. Pain in your hands and feet are very common in lupus. Here they won't diagnose it unless you have positive labs though. I have positive ANA, elevated CRP, and anti-RNP antibodies. I had symptoms probably for 20 years but they kept telling me everything was OK so I believed them and just kept on keeping on. I've had Pleurisy, and severe leukopenia in the past as well. The best of luck to you in your journey. XO Nan

[Hidden in reply to nanleighh]

Nan, thanks for sharing. I had been Vitamin D deficient. I will still share with my doctor.

[DRunnerchick]

I was originally diagnosed with S-RA and on MTX for 7 months until March. My feet feel like I'm walking on a bag of marbles when walking barefoot in the house. I also have pain in ankles, knees, fingers, wrists, elbows and shoulders to varying degrees. Current suspect dxs are Rhupus, Behcets, Primary Lupus or RA + sSS. Not sure if that helps but welcome to the neighborhood!

[Hidden in reply to DRunnerchick]

Thanks for responding and thanks for confirmation that the pain is not in my head.

[juliaselsey]

My feet often hurt. It's as if all the bones are broken and when I stand up they all scream! The fronts/tops hurt when I sit or drive and my ankles kill when i drive or stand;they swell up too! It used to be my knees but after 1.5 years of knee issues it's now my feet! I'm on methotrexate and live on codydramol!

[justjan2 in reply to juliaselsey]

My sister has fibromyalgia and has these symptoms. I also have fibro plus lupus and have these symptoms off and on.

[Claire133]

Hi Cosmolupie

Can I recommend telling the GP about this in detail and being very assertive with him/her, request a referral to a Podiatrist or Foot & Ankle Specialist.

I've had very bad problems with both feet for around 4 years now, I have bilateral plantar fasciitis and I had 10 months where I couldn't walk at all, I couldn't weight bear. I also have pain in ankles and all over feet now, I describe it as though all the bones in my feet have been superglued together, and are breaking as I try and walk. The pain is worse after rest when first placing feet on floor, especially bad with no shoes on, and in fact it is recommended not to walk bear foot or in flip flops as the feet have lack of support.

It is a possibility that you have a similar condition to me and you really need an ultrasound of your feet so they can look at the ligament that runs under your foot, where the arch is, and especially to look at the attachment area to see if there is inflammation. If you have inflammation they will offer you exercises and Naproxen, or injections. I tried everything over 2 years and nothing worked, then had 2 lots of the injections and it was instant relief.

With any luck they will make you orthotics for your shoes too.

Good luck and hope you get a referral asap. Claire 🙏

[Hidden in reply to Claire133]

Claire, thank you so much!!

[Hidden]

I've had this for yrs it's caused by vasculitis small blood vessel disease and your feet become like your walking on broken glass due to inflammatory response it comes and goes like when you have a flare

[Hidden in reply to Hidden]

Thanks Anni63 for sharing your experience. It's helpful.

[Kjmarsh]

Hi Having had Lupus for over 12 years, painful feet is common, especially the bony parts and you feel like you are walking on cobblestones all the time. As Claire 133 stated you must get treated on a regular basis by a podiatrist. The will look at aspect of your feet and can make cushioning soles for you. Good luck. Kirsten

[Meganx3 in reply to Kjmarsh]

For two years the pain was so bad in both my feet I could not stand on them when getting out of bed every day. This was before i was diagnosed with SLE + Sjogrens. I had to push myself to try to stand and walking was awful. I was told by my doctor who did not look at my feet that I probably had Spurs! I new he was wrong. My Rheumy told me its part of my auto imune disease. I would still recommend seeing a doctor.

[Hidden in reply to Meganx3]

Thanks Meganx3. I'm happy that my symptoms were not all in my head.

[Hidden in reply to Kjmarsh]

Thanks, Kirsten.

[creaky]

Foot pain is one of my main problems, some burning pain on the sole of my feet but severe pain on the tops of my feet. I find it difficult to find comfortable and stylish shoes.

I'm happiest with nothing touching my feet to be honest.

I don't know the answer sadly, hope that this helps 💐

[Hidden in reply to creaky]

Thanks Creaky. I'm also happiest wearing no shoes at all. Definitely a change for me since I love shoes, well before Lupus started giving me problems.

CosmoLupie 💜💜💜💜

[Chanpreet_Walia LUPUS UK]

Hi Cosmolupie,

Have you spoken to your doctor about the pain you are experiencing?

We published a factsheet which explains some of the foot problems associated with lupus; it is important to remember not all will develop these problems. To read our factsheet on ‘LUPUS: and the Feet’ please click here: lupusuk.org.uk/wp-content/u...

We published an article on our blog about pain management which I hope you will find useful: lupusuk.org.uk/pain-managem...

Please keep us updated, wishing you all the best.

[Hidden in reply to Chanpreet_Walia]

Thank you! I have Reynauds, so this may be the cause of my troubles. I will share with my Rheumy. I will try the two pairs of socks, as recommended.

CosmoLupie💜💜💜💜

[Roanna]

Hey Cosmolupie,

I'm late on the thread here but just wanted to share other possibilities. I've had SLE for 30+ years. I've been on most meds for SLE. I would get swollen ankles, tender feet at the end of the week which would go on for a few years then disappear for years, never to be seen again. I've had ultrasounds on ankles and on digits but all I've been told is "Yes you have inflammation". But, after having bunion surgery on both sides of feet, on both feet, I started to get burning and pain again only different from anything in the past. The Doctors can't tell me what is going on, and one has even told me it is from my lower back. That I can believe because I started getting lower back pain around the same time ( after having a hysterectomy same time I had bunion surgery). Heck why not shock the body all at one time right..... Also check into orthotics. Mine saved me being on my feet all day, I could go forever with my custom orthotics and a lot of that earlier pain never came back after getting them. I do have some fibroids on ligaments on the soles of my feet which can be removed but will more than likely come back. A good podiatrist and physio may be able to answer your questions but from experience you may never find out a cause, other than just a lupus thing. Good luck to you and I feel your pain.

[Hidden in reply to Roanna]

Thanks Rosanna. I spoke to my Rheumy and he had no idea what would cause the pain. I'm going to ask him again about it and see if he can refer me to a podiatrist. I've also noticed my ankles swelling. I just want to walk like normal.