I'm up at 3:30am writing this post because I can't sleep due to so much foot pain. This pain kicks off in the evening - after most days where it disappears or I can at least forget about it, when I stand up in the evening after sitting on the sofa for a bit, I suddenly am hobbling and my feet are stiff and a bit sore. This gets progressively worse until I go to bed. At night it frequently wakes me and by morning it's so bad, I can barely walk to the bathroom.
The thing is that it's pain that is hard to describe. It's like that feeling you get when you walk a really long time in some shoes that don't fit well (but these days shielding I often am not wearing shoes so that's not it!) - I feel they need a really good massage and if I press on them it's like a headache, it feels helpful. I have bad callouses and Reynaud's but while it feels like surface pain it also comes from within the feet. It's not just on movement at all (thus the pain that's keeping me awake now) but certainly when I try to walk it's very difficult until it eases mid morning. When I walk it feels like I can't move the joints - I walk really flat footed and have fallen at night trying to go down the stairs.
Help - does this sound familiar? I've spent tons of money twice at podiatrists and it's made things no better. This has gotten progressively worse over 3 years. I'm 49 and have SLE diagnosed age 12 - I'm on typical lupus meds.
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ShannonB
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Hi, I hope you managed to get a bit of sleep. Having sore feet is a horrible thing, you can’t think of anything else. I can’t really help you but sending hugs . I have MCTD and get weird things happening all over my body at times. I have hallux rigidus on my big toe which is very painful, I find my feet get worse without a sock or shoe on to protect them. Are your feet swollen? You should try and call your GP if you can get hold of them. Take care Shannon x
Thank you for the thoughts and reply and sorry you also struggle with your feet - my feet don't seem terribly swollen (or the swelling doesn't align with the pain if that makes sense). I finally got back to sleep around 5am. Hoping for a better night tonight!
Sorry to say: your description seems familiar to me....so, for what it’s worth, maybe my feet story can offer up something.:
my lupus was infant onset...but I was born in 1953 before treatments became as sophisticated as they have. So my Lupus went relatively unmedicated except for emergencies until the manifestations in my peripheries became way too severe in my late 40s early 50s.
Like you I’d always taken v good care of my feet inc bespoke orthotic insoles & regular podiatrist appts, even so, lupus-related progressive debilitation & tightening of the tendons in my lower legs and feet resulted in much deformity (Crowding in forefeet due to equinus contracture causing mortons neuroma, synovitis, bursitis etc etc etc) + CRPS (complex regional pain syndrome). And, as so often happens with us, there were various comorbidities including secondaries complicating all the mess my feet had become despite all my best efforts: hEDS, Raynauds, erythromelalgia, small vessel vasculitis etc.
Of course all this gave me constant pain & limited weight bearing activity in a big way for years. But once my lupus finally began to be more adequately medicated in 2010 , various consultants were able to help me manage the pain + claw back some function by undoing the equinus deformity caused by the tendon tightening which made ALL the comorbidities affecting my peripheries so debilitating.
So, revising my bespoke orthotic insoles prescription + stronger daily therapeutic Lupus meds + a specially prescribed long term intensive lower legs & feet rehab regime are probably what helped me most, but getting me back on my feet took a lot of focus & commitment & networking between specialist medics..and, although we’ve achieved a lot, the debilitation is still progressing & at 66 my feet still give me a tough time 24/7 ...but we now understand the combined forces messing up my lower legs & feet well enough to manage them A LOT better
Last summer when heel lesions set in, I finally self-referred to our local NHS podiatry Service where they said: you met the criteria to be in our care years ago. So now I run my private specialist podiatrist alongside the NHS Service. I also see a specialist physio who helps me modify the intensive rehab regime as it becomes tougher due to my body aging.
I could go on & on about all this...but my reply is WAY too long already, sorry. whatever, this subject is very close to my heart, & if there’s any way my version of this can possibly offer something useful up to another, I find it very hard not to offer my stuff up...I’d think your lupus meds have probably been helping you slow your version of this debilitation...and should help any rehab you try to work for you!
Am sure you’ll get great replies...take care & good luck
You’re welcome & thanks...if I were to suggest anything, it’d be, yes, to see your GP, and then be examined by ‘new eyes’: see an autoimmune disease (AID) specialist podiatrist & an AID specialist physio for thorough reassessment...& ask them about tendon tightening in your lower-leg/feet. There is a simple test...I’ll add a link as a PS. my feeling is that because your lupus is adequately medicated, you have a very good chance of responding to any rehab much more promptly than I could
“Using the Silfverskiöld test makes it possible to determine whether the tightness originates from the gastroc-soleus complex or strictly due to an isolated contracture of the gastrocnemius muscle.”
Many sympathies 🙏 I get foot troubles, my toes don’t bend my big toe on one foot gets dreadfully painful and hot burning feet or stone cold discoloured. My ankles after getting up and body is so stiff, the ankles ease when using but after stopping go all through it again. My toes are real painful when in bath 🤷♀️ Yes changes the way I walk and I am far from flat footed but feel like a penguin, like slapping feet down 🤷♀️ Like you it’s hard to describe. A lot of toe cramp too left foot where toe painfully splays , real painful. My pain feels like tendons rather than joints. I hope you find help and a good nights sleep 💤 best wishes 🙏
I've got pain very much like yours - it gets really unbearable. Different doctors kept giving me different diagnoses - nerve damage, swelling etc. It's got so bad I demanded an x-ray and they have now diagnosed oestioarthritis in most of the bones. It's worth keeping on at them and having an x-ray if you haven't had one. Good luck.
It's very bad in the morning when I get up and walking makes it worse I can't walk very far anymore because the pain is too bad. Sometimes when I sit down in the evening I don't know what to do with my feet🙂 and sometimes it does keep me awake.
They only suggested painkillers but I honestly don't think they give me much relief and a lot of them make me drowsy which isn't good with the lupus. They suggested Rosehip extract but it takes 3 months to have any effect.
I bought a foot spa and sometimes putting them in it relieves the pain a bit.
I'm trying not to paint too black a picture but I don't think there is much else they can do
Hi Shannon. I can very much relate to this. I complained for years about my feet. I went to GP’s podiatrists, got orthopaedic insoles, creams nothing worked. Then I went to a Chiropractor in desperation for my knee problems. Upon examining me he said your feet need adjusting. He pulled and twisted my feet. Initial intense pain and a huge crack and for the first time in nine years my pain was gone. Until lockdown he adjusted my feet and toes regularly. I still get intense burning but not the pain. It worked for me anyway. Good luck I know how miserable it is xx
Hi ShannonB. I have UCTD and have started to experience episodes of foot pain too, sometimes can struggle to walk and can't sit with my feet touching the floor and they just ache all day. As with all things it comes and goes and I'm not really sure what triggers it. This will probably sound weird but the lady who runs my tai chi class suggested I get a squash ball, the softest one I think it's a red spot, and use it to roll my feet on as a massage. I was sceptical but it does help me! Not a long term solution but might help ease things a bit. You have some great advice here so hopefully you'll find a solution. It is miserable. x
Oh Cecile, diagnosis with Lupus this year2021, my feet swell, also ankles and toes, nothing seems to help, but when u mentioned chiropractor I lit up inside because chiropractor has help my back in the past. This gives me hope!! ☺️ Thank you
I really hope it helps you. I also sleep with my legs raised to let the oedema drain. It is so uncomfortable and painful. Please let us know how you get on xx
I really struggle with stuff like this. I want to say - oh, not everything is lupus-related - but what you describe is so familiar. Feet hot, burning and painful - sometimes I am not even aware of it until I am trying to work out why I can’t sleep - and can’t keep my legs still or get comfy in bed. I have tried insoles and various sorts of supposedly orthopaedic shoes but nothing really helps. The stiffness and flat-footed walking is very real - and first thing in the morning too. Things I do to try and help myself include sitting with my feet in a cold bath in the middle of the night (or walking outside in bare feet to cool them right down to the point where they are numb). I now have some CBD balm that really seems to help - but at £15 for a tiny pot it’s not an everyday solution. (I’ve not bothered to mention to a rheumatologist - because it is so hard to describe what is actually going on and I am too used to the blank look that says ‘what do you expect me to do?’ ). Sorry I can’t actually be of use - I have a comfortable pair of boots and I am still wearing these even though it’s summer because they seem to lead to less pain at night.
I’m both sorry to hear about your challenges and relieved to know it’s not just me. I can relate to everything you write here. Thank you.
Hi,
I have this, but we are just now trying to discover what my autoimmune diagnosis shall be this time. I am in the US, but I have a cream called Voltaren that started out for my knees, but it helps my feet immensely! It has an anti-inflammatory and a numbing agent.
My feet get get bright red and burning hot to touch. Other people can feel the heat. I believe I have Erythromelalgia, but getting that diagnose would mean having a real neurologist.
Voltaren Cream is by prescription here, but it or something similar is worth a try.
Hi I too have really bad foot pain. It was one of my first symptoms. Foot clinic said it's plantar fascitis but it's so much more. I have huge amount of numbness and inflamed viens on my feet. Definitely have neuropathy if some sort but it's never given a name. I wake up in the morning feeling like I have been on my feet all night! I have treated myself to a circulation booster and use that in the evening. It definitely improved things at the time. Bad again in the morning ☹️ I would love to know why it's worse after testing all night? Or exactly what it is.
Every symptom seems to only have short term relief.
I have had painfull feet mainly at the base of the feet with rash sometimes as well. Yes, they are worst at night and in the mornings. I had a period of painfree feet when I started cutting out food related that triggered flares. I now only get them when I have a bad flare or an infection some where in my body . At the moment , I am having a painful feet the rash has cleared up with a gel the was given by consultant a long time ago via prescription . it works very well with all my lesion spots as well that is popping up at the moment. I hope you will find a solution with yours . I used to go a chiropractor before a long time ago pre lupus days for my migraines and my pelvic. It helped alot she then retired from it. have not found one suitable to go .
Hi Shannon I'm glad you wrote this as I have been having foot problems. Diagnosed with Lupus and Sjogrens in 2005 and put on Hydroxychloroquine which really helped. In about 2010 I had a good blood test and was taken off my medication and told I had a Lupus like illness!!! Had an open appointment with the Rheumatologist should I get any flare up's. Then in January 2011 I moved, new GP who I must say is very helpful and when I had a bad fare up sent me to a Rheumatologist I was in there about 5 minutes he'd done some blood tests and said you are fine so I just got on with it once again seeing all different doctors for different problems which I am sure are caused by Lupus. Maxillofacial for mouth problems, Optician for eye problems, Orthopedic surgeon for shoulder problem, Gastro for stomach problems. I'm sure you have all been there when trying to get a diagnosis!!! Then my feet started playing up (not impressed as that is stopping me getting around) started with numbness and tingling in my toes and feeling like I am walking on marbles, not so much pain but a weird sensation. As I am now borderline diabetic was told it's probably Neuropathy, diabetic nurse tested all fine, Podiatrist tested could find nothing wrong with the nerves in my feet but still said it was the diabetes. Had a Doppler test all fine, sent to a Neurologist who sent me for Nerve study tests he said feet were fine but found a problem with my hands, 3 month wait to see the Neurologist again and that's where I am now. I have had 3 falls or should I say trips and the same as some of you they are worse in the evening, at night and in the morning. I struggle to get to sleep and my feet are always freezing cold. Your post and the replies on it has given me some ammunition for the next doctor I see. Thanks and sorry it's so long winded.
Sorry to see this and your story is very familiar — probably to many lupies here. Hope you get some good support and the symptoms ease. Mine have moved on and I am struggling with different inflammation now but reading this I’m thankful to say I’m not falling as much and don’t have quite this same pain now! The nature of lupus!!
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