pain in feet: Does anyone in here with lupus get... - LUPUS UK


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pain in feet

silverbeatl profile image

Does anyone in here with lupus get pain on the balls of your feet that make it too uncomfortable to walk around the house without shoes on? My feet feel very tender and sore and I can't manage to walk around the house unless I have some sort of cushiony shoe to protect my feet.

28 Replies

Hi, Yes! I had this problem for years. Eventually got referred to podiatrist, who diagnosed Plantar Fasciitis. He made me some insoles which I wear in my shoes all the time. The insoles must have improved the condition, as after a few months I was able to walk round the house barefoot. I still wear the insoles in my shoes. Hope this helps.

I've had this at times. I'd describe it like walking on marbles.

I needed more treatment to control my lupus/vasculitis as those symptoms always coincided with more disease activity. It's very painful and as you say, difficult to walk!

AuntTea profile image
AuntTea in reply to Lupylass

That is exactly how I have described my feet. Like I'm walking on little stones.

I have arthritis in my big toe joints aarrrgggghhhh!

Yes. It varies with time of day but is not limited to the balls of my feet. Have read that small bones/joints feet and hands are the first to fall prey to inflammation. Hydroxychloroquine helps, though after six weeks am still suffering terribly from heartburn and queasiness.

milkwoman profile image
milkwoman in reply to 23_molly

Generic hydroxychloroquine is known to cause stomach upset. I couldn't tolerate it so had to be switched to namebrand Plaquenil. I have no stomach issues with namebrand. If you are in the UK, the namebrand has been rebranded and is now available under "hydroxychloroquine Zentiva". In the U.S., I've had a some success using hydroxychloroquine from Prasco Labs but have to switch between the generic and the namebrand when the heartburn returns.

Others in the UK have also reported good experiences with a generic hydroxychloroquine by Blackrock Pharmaceuticals. The pills are yellow and round.

23_molly profile image
23_molly in reply to milkwoman

Thank you once again for your counsel, Milkwoman. Am in the US. My doc insists that all Plaquenil is now generic, which makes sense. The formula has been out of trademark for years. As soon as the script runs out, I'll switch pharmacies and see what effect that may exert. Thing is, it's working. Molly

milkwoman profile image
milkwoman in reply to 23_molly

Hi Molly!

Your pharmacist is lying! (Or uneducated... I now recall you writing that your CVS wasn't, um, the best. ;) )

Here in the states, namebrand Plaquenil is most certainly still available (made by Concordia, tho package inserts currently still say Covis who sold to Concordia in April of this year).

To save money, I'm now taking a combo of generic and namebrand. I take the generic by Prasco Labs (which confusingly looks identical to the namebrand) in the morning and the namebrand in the afternoon. When heartburn returns, I then go back to at sigh namebrand for a few days. Seems to be working.

With all that we deal with on a daily basis, we shouldn't have to suffer with heartburn/stomach upset from the meds!!



23_molly profile image
23_molly in reply to milkwoman

Thank you, Milkwoman. I'm switching pharmacies. So-called name-brand at dosage 200 mg./day is $250, whereas generic is approx. $6.00. Paying $250/month is financially burdensome. It would appear that I have more learning to do. Molly

milkwoman profile image
milkwoman in reply to 23_molly

Sigh, yes, namebrand is costly. :(

At first, my insurance company wouldn't cover the script. But I had my rheumy submit a request stating that the generic was causing me vision issues (apparently, "stomach upset" is not a "valid reason" to be switched to namebrand) and the insurance company did finally approve it. I now pay $50 for a 30-day supply. (The generic is $3.86 for a 30-day supply). I will say that the generic by Prasco labs is better than any generic I've tried. You could try that one and see if it is better. The pills look identical to the namebrand (figure-eight shaped white pills stamped "Plaquenil").

We all have much to learn! 😊


in reply to milkwoman

I end up being prescribed heartburn medication due to hydrochloriquine. 😖😖

milkwoman profile image
milkwoman in reply to

Ugh. I've had that suggested. I refused on the grounds that I shouldn't have to take an additional medication to deal with the side effects of another. I then said, "what's the harm in trying the name brand and see if that resolved the issue?"

So that's what we did and now I'm on namebrand only.

bluefingers profile image
bluefingers in reply to 23_molly

Hi molly, has your gp got u on omeprezole? I take two every morning before I have anything else, this stops all heartburn, ran out not long ago ( was late getting my prescription in). Oh my was the heartburn bad? Will never run out again. Hope this helps. Stay strong. 💜

23_molly profile image
23_molly in reply to bluefingers

Hello, Bluegingers. Thanks for responding to my query. I haven taken lansoprazole for nearly 16 years. I had bleeding duodenal ulcers and eventually, a Dx of Barrett's esophagus. The pharmacy's info sheet suggests that PPIs are linked to kidney disease; my GFR is just short of 60. I've moved house recently and don't have a GI specialist yet. I myself withdrew the lansoprazole. Perhaps that was premature? I've been clear of Barrett's for 14 years but have rather mindlessly been taking 30 mg. every evening since then. Thanks again, molly.

in reply to 23_molly

Ho 23_molly. I take Pantoprazole for heartburn and it works wonders. No issues whatsoever.

For me its like walking on large pebbles, cant walk barefoot around the house any more as its so uncomfortable, and with osteoarthritis there's only so much walking I can do anywhere. Its been hard to adjust. I've lost some sensation too, the podiatrist did tests last year and there doesnt seem to be anything they can do about that. She seemed to think it was more to do with the arthritis and sciatic pain than lupus

I got insoles through the orthopaedics dep at hospital to realign the bones in my feet and give more support to the instep. I also bought insoles myself to make shoes more comfortable and its helped a bit but I cant walk far any more...very frustrating

Lupus can bring neuropathy with it. I remember my feet feeling numb way before I was diagnosed with Lupus. Do you have diabetes? Walking barefoot - especially on tile or a hard floor has always been a no-no with my orthopedists. I did once have a stress fracture in the middle of my foot, and my ortho said it was because those bones are fragile and can crack at any time. Wear comfortable slippers in the house.

Hi adeangelo. Yes, in a word. I recently had had enough and self-referred to an NHS podiatrist who was very helpful. I have lost a lot of the fleshy 'cushioning' on the balls of my feet so I have been given some special foam and also insulating insoles to keep my feet warmer and provide more protection. I am also getting orthotics made up for me as apparently I use my toes in a strange manner when walking (!) and must also do set foot exercises. It'll be interesting to see whether all this helps. Perhaps worth you trying to see a podiatrist too?

Thanks for the info. I saw a podiatrist in the past for a different issue but maybe it's time to make another appointment since it's so bothersome and persistent. I was hoping that Plaquenil would help but unfortunately it hasn't.

Yes, I have plantar fasciitis and hurt when I walk, I have been wearing good feet cushions, measures by the way I walk when it hurts, also my RA gives instructions to excercise to help planter fasciitis, you can also google up. Now, I only exercise in the morning and walk normally without cushions.

Good lucks.

Yes, I have gotten this, worse on my right foot. The condition was aggravated by working out on my elliptical cross trainer. I wear cushiony sport insoles in my workout shoes and cushiony inserts in all my other shoes. When it got really bad, I needed to ice my feet.

I do have to limit the time I am in any sort of shoe with a heel, but I can still wear them.

From what I understand, lupus can cause inflammation of the metatarsals. Activities such as jogging, running, even walking, can aggravate it. Also, ill-fitting shoes and being overweight. I use shoe stretches to make sure the toe box of my dress shoes is not pinching my toes. I also make sure that any tie shoes aren't tied so tight as to pinch my toe area (especially when I am working out).

Right now my feet are doing great and I do not have pain. The minute I feel any sort of discomfort, I make sure I rest my feet and ice them. I am also on Plaquenil so I'm sure that is also helping to alleviate inflammation.

If your pain is really bad, you could have a serious condition and I would see a podiatrist.

I take Plaquenil but sadly have had no relief

yes have has for many years

i wear alegria shoes as they have an amazing removable sole in them check out on e bay

Hi. Walking on marbles is my norm. I've had 6 operations on both my feet with my right foot now fused, all toes shortened, k wires to join them back together. All right toes are now floppy and no feeling with the big toe pinned together so it doesn't move at all. It did help a lot. My right big toe was at 45degrees across my second toe. Now with it fused and the sides cut off there is much less pain and I learned to walk again. I had NHS shoes made for me but they are pretty yuk so I don't wear them much. My left foot is having more problems now and isn't fused though 4 toes are shortened. I've pics of the procedure with k-wires if anyone needs a visual to see what they do, but they're not for the faint hearted. They show before and afters. I attached flags of the world to the k-wires which kept me smiling for a long time. It did make such a difference but wearing casts for months was hard work and 6 major surgeries later with lupus kicking in as my lovely white cells went to the rescue was very painful. Learning to walk again after big surgery is a challenge. It was worth it for the difference it's made though I won't ever be running a marathon! I still have constant pain but not like the pain I used to have before the surgeries.

I find having the marbles massaged / pushed very hard is almost between pleasure and pain. I have a wooden rolly thing that I push my foot onto and press hard. Even pushing the nodules against the wooden arm of a chair gives relief. Excruciating, yet it relieves in some way. My son (who has been a young carer) found it hysterical hearing me shriek and scream and then burst into fits of giggles when he pushed the marbles for me. He's 18 now so he try's to avoid my feet as much as poss!). As the marble is pushed up through it appears on the top of my foot and my toes fold down. The nodules from the rheumatoid are nasty and walking at times when swollen is unbearable. I cant walk any distance at all without swelling. A wheelchair in the past has been a godsend (can't use crutches due to knackered crooked gnarled hands and pressure points on my arm that the lupus attacks.

You can buy gel pads to put between your toes that cushion the balls of your feet. Peppermint foot cream and one of those water foot baths has helped in the past.

I fear another surgery will need to happen on my left foot in the not too distant future.

I've had trouble with my feet since my young adulthood when I was first provided with bespoke orthotics. Am now 61. Despite conscientiously being treated by

podiatrists + using bespoke orthotics in sensible footwear all my life, by my mid 50s, similar symptoms to those you're describing had become so debilitating that I often couldn't bear weight and was virtually housebound

It took almost 8 years of frustration + pain to finally get full & complete diagnosis of the complex of lupus related problems causing my lameness. meanwhile what turned out to be my infant onset lupus was rediagnosed & treatment with prescription oral sle meds begun.

during investigations into my feet probs, I had top UK NHS ortho surgeons telling me to just stick to a wheelchair & give up. But finally my pain consultant referred me to a genius prof ortho surgeon on the other side of the country who found the missing piece to my diagnostic jigsaw puzzle: progressive tendon tightening in legs & feet causing a type of club foot. The physio rehab he prescribed has been & continues to be extremely time consuming & arduous but it has given me back my I walk well & can stand on my 2 feet with virtually no pain

My version of this has been fully diagnosed as due to the combo of:

- arthritis, especially in big toes

- Osteoporosis causing collapsed forefoot (high arches not collapsed though)

- A lifetime of mainly untreated infant onset SLE permitting lupus tendon tightening in legs & feet to progress into equinus contract us (club feet) disguised by the fact i'm globally hypermobile: ED type (which in my case means loose ligaments making joints floppy + paroxysmal haemtomas amongst other stuff)

- Mortons neuromas & bursitis in both forefeet developing due to the cramped tightening of forefeet tissues (the pebbles under toes sensation is mainly due to the neuroma)

- simultaneous raynauds & erythromelalgia in a constant 24/7 year round cycle of extreme chilling & burning denaturing the soft tissues of my feet

- sjogrens drying out the skin and contributing to severe dry callus formation

- relatively "normal age-related loss of muscle mass" cushioning in the balls of the feet

Some of the above + various other neurological issues also affect my ankles upwards. on my right side i have foot drop, and both limbs tend to numbness, stiffness especially in the joints, and a weird sensation in the lower leg as if cold water is running down inside and the whole calf is being twisted like a wet towel

i won't go fully into the treatment plan I continue to follow in order to maintain my mobility & freedom from pain, unless someone is interested & asks for more...cause i think i've gone on long enough + i have posted about this plan on forum previously. basically, surgery is a possibility, but for many reasons am avoiding it as long as poss. what has & is helping includes:

- effective oral systemic lupus meds reducing inflammation in soft tissues of legs & feet, which makes them less stiff & prone to tendon tightening

- intensive gastrocnemius stretching

- bespoke fullfoot orthotics with metatarsal domes

- well padded low heel shoes

- steroid injections in metatarsal joints up to 3x per year

- monthly podiatrist nurse pedicures

- slathering on l'occitane shea butter moisturisers

I hope something in all this is useful to others

Wishing you all the very best🍀

Thanks for all that as wondered what the burning feet thing was as opposed to the Raynaud's feeling.I also appreciate finding someone who also has ED hypermobilty as well as everything else.l was told repeatedly that I couldn't have it as well until both my youngest boys were diagnosed Ehlers Danlos and then it was agreed that my hypermobilty is ED too.A Shame the floppyness from the ED and stiffness of arthritis and sle couldn't cancel each other out and make us OK?

Keep up the good work as it sounds like you're doing a great self help régime.

Wish we didn't have this stuff in common, but it's good to be in touch...

Hmmm....when they repeatedly insist something is white, how often does it turn out to be black, or even just a shade of grey!

Thanks for the encouragement...I wish putting together this sort of regime didn't seem to so often involve years of laborious searching for medics who can actually help

Take care

Me, me, me! I'm happy it's not all in my head! I'm going to ask my Rheumy to recommend a podiatrist.

CosmoLupie 💜💜💜💜

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