I was diagnosed with Lupus SLE last year, and I have Osteoarthritis in both knees. But I have such painful feet, I didn't know if this was part of the Lupus or not, or whether its the arthritis that has gone to my feet.
I'm still learning about this illness and the more I read the more worried I get, my Rheumy Consultant said I only have a mild form of Lupus, but I can relate to all things I've read about it.
You may find our factsheet about lupus and the feet helpful?
I am low end too, but have my feet cramping lately at night when I get into bed. Thanks Paul, I will check that site out.
Thanks very much !! I only joined here this afternoon, so I'm having a good look round this wonderful site. Thanks again xx
When my lupus is more active I feel like I'm walking on marbles. It's very painful. My rheumatologist nodded in acknowledgement when i described that pain to her.
Having mild lupus means you don't have any major organ involvement, but it doesn't mean you won't suffer from pain or fatigue. It's still, at times, awful to deal with.
Has your rheumatologist offered any advice for your feet pain? Or have you tried a podiatrist?
I hope you find a solution, as foot pain is unpleasant - you have my sympathy x
This is new to me. I have severe SLE Lupus with involvement in every system except my kidneys. Thank God. I used to wake in the morning and my toes felt like little sausages. This would pass a couple of hours into the day. Thinge last month or so, I have felt like I am walking on shooter marbles. The pain is intense, and if I have to stand, the sides of my feet are the only way. I have given up my shoes for open toed, slide in sandels with fuzzy aloe vera socks. The fuzziness helps cushion my feet and the aloe makes them incredibly soft. (a wonderful side effect). The intense pain lasts all day. I am not willing to stop living and be a couch potato. My PCP (who has RA) told me it was a flare and upped the medrol. It's not helping. I have tried ice and heat all to no avail. Anyone have any suggestions? Please. I can't take it.
Doesn't look like there is a consistent approach for this - here's an article from arthritis research uk about it - arthritisresearchuk.org/new....
It's terrible that on top of everything else you have, now this. Although the picture of fluffy aloe vera socks with sandals is worth remembering :).
Yes, my dry cracked feet are gone. t received them from my granddaughter for Mother's
Day. I don't care what they look like. Just bought 2 more pairs. Thanks for the article, going to it right now.
I tried the link, but it didn't work. Went on sight and I read this article arthritisresearchuk.org/new...
It's great to know they are doing research on this. This has certainly curtailed my activity.
Hi Georgie 63
I too have painful feet due to the inflammation . Have you been put on any treatment for Lupus?. I find the steroids help with this and my symptoms vary according to the dose I'm on. It might also be the Osteo-arthritis as they say that can cause inflammation. Worth asking your Consultant.Hope I've helped.X
I've just discovered Skechers shoes - there is a whole range of trainers, casual shoes, sandals. The ones I've bought are from the GoWalk range - they have a 'bubbly' sole, are very light and are sooo comfortable! My husband who has diabetes and sensitive feet also has a pair - you don't know you have them on. Unlike many 'sensible' shoes, there are also a range of colours and a bit of bling if you like that!
Hi- sorry you are having this. I have RA rather than Lupus but one of my first symptoms over three years ago was burning feet - the soles felt as if I was walking on red hot marbles. I describe this as like wearing pain socks and over time they went from being ankle length to knee high!
The burning soles went away for a while but came back with a vengeance when I came off my DMARDs (tolerance problems). Eventually, after this burning pain spread into my legs and I was being tortured by it 24/7 my GP (rather than my rheumatologist who would only shrug and say it wasn't my RA) decided to treat it as Raynaud's and put me on a low dose of Nifedipine by slow release. It did complicate things initially as my feet and other parts would suddenly become steaming hot and very flushed but once I was on the lowest possible dose - bingo - no more burning soles or pain socks!
My feet are still quite sore every morning or if I walk a long way and I see a podiatrist regularly but a Lupus specialist I saw on Monday explained that my GP was spot on to identify and treat the burning soles as secondary Raynaud's.
Twitchy
Thanks for all your replies !! I am on the hydro such lot I qui me but I think I need to get them to up the dose. But I am also going to try and get the fluffy aloe vers socks too ....lol
Last summer my feet were swollen and I bought a pair of FitFlops, they are really comfortable, as it distributes your weight so its not all on the painful parts of your feet. I really found these helped me in the summer. I never liked the bits in between your toes, but trust me you don't feel it. I hope I've helped some of you in return 
Feeling for you big time, as I've been dealing with a case of CRPS (chronic regional pain syndrome) in my feet for years....am 60 now - this started in my teens...anyway, treatment has included everything from reflexology to steroid injections. Bespoke orthotics from a podiatrist & monthly have made it possible for me to stand & walk meanwhile...no doubt you know the type of footwear that helps you most
Last year my pain consultant referred me to a foot wizard prof orthopaedic surgeon on the other side of the uk. This HERO figured out the last piece to the jigsaw puzzle of conditions affecting my feet: tendon tightening & denaturing due to my infant onset SLE going untreated until 3 years ago. He prescribed a heavy duty special daily physio routine in order to avoid surgery...and this routine is now in its 25th week, helping me walk & stand easier and less painfully than I have been able to in many years
So, now, at least I am confident that I finally know pretty much all the conditions that are working together to make life especially hard for my feet (and haha my hands share all this...if I walked on my hands, they'd be as bad as my feet!). I wish the same for you all here....sadly, I've had to be vvvvv determined to achieve this complete a diagnosis...because several times top nhs consultants told me I was a hopeless case & should go away and stay off my feet!
For what it's worth, my feet (& hands) CRPS jigsaw puzzle is mainly made up of:
Lupus
Raynauds
Erythromelalgia
Mortons neuromas
Bursitis & synovitis & capsulitis
Osteoarthritis
Ehlers danlos type hypermobility
If anyone wants to know more about the physio treatment that has helped me so much, I'm vvv happy to post details...but I feel I've gone on long enough for now already
Take care
I have mild Lupus, but my feet have hurt for years. In fact if it wasn't for my feet, I could certainly walk a lot farther than I can at present. I have been referred to a podiatrist twice and have been given insoles that help a bit, but not enough to make a difference. Although my feet are not swollen, I have bunions and my soles hurt after walking a short distance, and my middle toes feel like someone is sticking needles in them. Finding footwear to accommodate all the problems with my feet, is an uphill struggle. Doctors I've noticed, pay little attention to foot problems, but you can't get far if your feet hurt.
Hi, also have this but had an ultrasound scan and it didn't show up bursae, showed osteo arthritis with big toe joint but nothing else. What can be done to help it anyway? I already take steroids, plaquenil painkillers....etc?
I understand some of what your saying. My recent flare arrived with painful feet. They start the day being really stiff, take an hour or so to loosen and start to get painful. Brillx
Anyway I have liquid filled soles that I put in my shoes that work and I recently bought a pair of Sketchers. Both work well, giving me a lot longer on my feet.
I wouldn't be able to walk without bespoke full foot orthotics in my shoes. I've tried the OTC orthotics, but they just don't help as much. My podiatrist works with the orthotic firm LANGER. These orthotics are expensive, but I can walk & stand thanks to them. Mine include metatarsal domes because of my forefoot problems. These domes were added about 8 years ago, and
helped reduce my mortons neuroma nerve pain & bursitis/synovitis enormously
I can only wear trainers that fit these orthotics. I take the trainers' own insoles out & put the langers in. But I can also get my langers into wellies etc.
Another tip is to use arnica gel or cream daily, which soothes burning symptoms v effectively, & encourages improved circulation & helps with raynauds nerve probs. These help my simultaneous raynauds & erythromelalgia. I find...boots stock a good fairly priced arnica cream. But my fav is vogels arnica gel (Amazon does it)
Finally, I get my hard skin & nails taken care of every month by a skilled pedicurist (no polish so my nail bed symptoms aren't obscured)
The nhs has been grrrreat in many ways over the years for both for my health probs & & my husband's crohns, and I know nhs finances etc are vvv tough, but in the past 10 years, my feeling is that the NHS has been letting my feet down badly...during these years almost all my truly effective feet treatments have had to be private. The nhs has just shaken it's head & urged me to stay off my feet....to my relief, I've heard of others who are getting nhs help with their feet, but I haven't managed to succeed....as far as I can see, there are no nhs podiatry depts left in my immediate region. The situation seems worse than dentistry. But the nhs locally does seem to make an effort for diabetic feet....hmmm....I've been advised that my feet probs are just like the probs diabetics get...Drs have warned me about gangrene & amputation....I don't feel I can complain because I'd be lost without the nhs, so....instead I do my best to budget so I can have private treatments. The only orthotics the nhs have given me were cobbled together out of OTC insoles and even out of cardboard & cotton wool. This situation seems to me to be a vv sad & serious symptom of our times & the pressures on the nhs
I've been on this forum since it began, and over the years there have been loads of discussions about feet. without mobility, our health only deteriorates which costs the nhs even more....all very worrying
I've suffered with this for over 10 yrs. my GP in Texas put me in strong pain meds and it helped me so much. I had moved from TX to NY and for some reason unknown to me, I was taken off and I've been trying to get help for over two years. I am at the point if going insane with pain, working with pain management is not helping. Supposed to find out on June 3rd what they are going to do, for me, it's not just my feet, all of my joints are severely damaged and very painful, but the feet is the worst. I've tried so many things, tramadol and MS Contin was the recent medication, it worked well, but the docs didn't like it. I'll keep you posted.
Thank you to all the replies !! I am loving the fluffy socks, they are a delight to my feet as they feel like they are in a fluffy cloud.....lol. But I think I need to probably up my Hydroxychloroquine dose as I'm only on 200mg, so we'll see what gp says, but many thanks to everyone for their help.
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