Pain in toes and feet: I've been having pain and... - LUPUS UK


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Pain in toes and feet

clova profile image

I've been having pain and cramp in my toes and soles of my feet for over 5 years. All that time I've been wearing orthotic insoles but even with the insoles I'm in pain after walking for 30 mins. I've been told after a scan that the lupus has attacked the small joints in my feet and there is nothing but orthotics and wearing wide width shoes that will help. Does anyone have any tips on how to deal with this awful pain. I also find if my feet get too hot or cold without walking it sets if the pain. I also have Hughes syndrome and raynauds .

15 Replies

I too have pain in my feet, but never been told what the root cause is only, "well you have auto immune disease!" I have insoles and braces (the braces are very restrictive, so don't use very often) my shoes have to be bought from shops like cosy feet. My feet swell like balloons. I also have been told I have raynaulds and sticky blood (which I think is hughessyndrome?)

The only thing that helps me with the pain is regular feet massage,every 5/6 weeks and a circulation machine which I put my feet on and it sends little pulses through the soles. The down side is both suggestions can be expensive. But for me they are worth it.

clova profile image
clova in reply to Chris21

Thank you chris21 for your reply

Hello clova. Am v much feeling for you. As I understand it, our feet can have a similar set of problems to diabetic feet. And often our problems go unmonitored, whereas now diabetic feet get lots of monitoring. Isn't the main thing to investigate your symptoms thoroughly enough to understand the underlying cause/s? I've had to learn this the hard, perhaps I can help, at least a bit.

First some background: i have infant onset lupus with the usual collection of secondary conditions. My version of toes & feet pain began to be a daily prob in my teens. at the time, my podiatrist & I were unaware of the infancy lupus diagnosis because my mother had told no one about this diagnosis. So, I'm 62 and all my life I've been managing the cumulative damage caused throughout my body by the uncontrolled inflammatory process of lupus & co. And my extremities (hands, feet, head etc) have been particularly debilitated. So, like you, the small joints & soft tissues in my feet are affected. The NHS finally recovered my lupus diagnosis 5-6 years ago...since then various NHS clinics have figured out virtually all of my lupus-related chronic multi system problems including those in my feet

For what it's worth here are a few thoughts;

So, like you, I've worn bespoke orthotic shoe insoles all my life, with podiatrists updating the prescription just like opticians do with spectacles. Do you have your orthotics updated? Perhaps a review with your podiatrist could help?

I'm guessing you wear shoes that give you the right kind of support...if you're hypermobile, like me, you probably need firmer support than no hypermobile people. I stick to new balance 996 trainers with my bespoke orthotics

What type of scan did you have? Was it an MRI? My understanding is that only MRI can give a really good diagnosis of soft tissue problems in the feet. Thanks to MRI, we discovered I have Mortons neuroma & bursitis + capsulitis & synovitis in the forefoot (metatarsal joints) which give me awful chronic pain + nerve jolts + cramping. I've managed these conditions via the orthotics + trainers + steroid injections + a special NHS physio rehab regime (more on that later). After decades of agony, all this is helping so much now that I can walk & stand again without a cane.

Re the hot & cold symptoms: has rheumatology considered whether your raynauds is simultaneous with erythromelalgia? This is unusual, but I do suffer from it. It creates a daily cycle of inflamed swollen red burning tissues alongside freezing white tissues (bizarre but it happens in my feet & hands). And, like you, the hotter parts of the daily cycle do set off my feet/toe pain even without walking....I can be sitting down & the pain starts! I'll add a helpful link later that gives info. I find that monthly podiatry-nurse pedicures helps somewhat with this by keeping down any hard skin. Intensive moisturising is also v important. There are other tips I could give, just ask if you're interested

Finally, have your rheumatologist & podiatrist examined the function of the tendons throughout your legs & feet? Systemic lupus can cause denaturing & tightening of these tendons. Tendon tightening & contracture (called by podiatrists & orthopaedic surgeons: Equinus) causes crowding of the soft tissues & joints in legs & feet. This contracture can cause dreadful chronic pain + cramping and lead to the development of bursitis, synovitis, capsulitis & Mortons neuroma especially in the forefeet, but also affecting other parts of feet & ankles. There is a simple technique experts use to test for this sort of tightening & contracture: the Silfverskiöld test. When my equinus contracture was finally diagnosed, my Drs & I were finally able to design the physio rehab regime that has made all the difference to me

I do think the meds in my lupus treatment plan are important to my feet, eg without daily hydroxy + myco + pred the inflammatory process would make it harder for my tendons to stretch in response to the physio rehab I do, and also I think these meds somewhat damp down the erythromelalgia burning...but an antiinflammation diet + other lifestyle management help a lot too

that's enough for now, I imagine! As you can tell, this subject is close to my heart! Your probs may be different to mine, but possibly something in all that can help?

Wishing you all the best

🍀 Coco

That link to info about simultaneous raynauds & erythromelalgia:

And this link explains the type of tendon contracture I've outlined & the Silfverskiöld test:

clova profile image
clova in reply to Barnclown

Thank you barn clown for such a detailed explanation of what is happening with my feet. I have been told that I do have a mortons neuroma and that the metatarsal joints are affected. I find when I'm in the car sitting with the heater on that this sets off the pain and cramp, and once it's flared up its dreadful to walk after that. I am going back to orthotics in March to have the insoles reviewed , but to be honest even the insoles only help for a short time and these were renewed last September. The rheumatology podiatrist said to contact her if the insoles don't work and she would refer me for possible surgery . The funny thing is my left foot is affected worse than the right and the neuroma is on the right foot.

Barnclown profile image
Barnclown in reply to clova

Yes, clova:

Me too: one side is affected more: in my case it's my right leg/foot. So, although I have neuromas & bursitis in both forefeet, the right foot is worse. My consultants tell me these chronic pain probs can be one sided. In fact, the pain in my worst foot was classed as a case of CRPS (Complex Regional Pain Syndrome)

You have described your case so well, and in such revealing detail that I am almost 100% convinced your case is very similar to mine. I suffered greatly during the worst years of all this...I couldn't stand and I could only walk for 15 min at the most. It took me 7 years to get a complete diagnosis that convincingly identified & treated all the causes of my version of this complex problem. Those 7 years coincided with the years when the NHS finally recovered my infant onset lupus diagnosis - that diagnosis was recovered & lupus meds begun 5-6 years ago when I was in my mid-late 50s.

During those awful 7 years of agonising foot pain & of searching for convincing diagnosis of my feet probs + effective treatment that could help me stand & walk again, my long time pain consultant was giving me steroid injections in the metatarsal joints, but they only provided temporary relief.

the very expert surgeons I consulted felt it would not be advisable to operate on my feet for any reason because of the SLE & the raynauds simultaneous with erythromelalgia...(of course, by the time I'd had 7 torturous years of the extreme pain in my right foot I was mentally preparing myself to insist on amputation...I was right foot seemed the only option...but I never got that far thank goodness...and besides, experts say amputation isn't a solution for CRPS)

Finally, only a few years ago, my pain consultant referred me to a brilliant prof ortho surgeon on the other side of the U.K. This brilliant consultant immediately diagnosed my tendon tightening & equinus contracture. He prescribed an arduous daily physio regime: I could feel this regime helping my forefeet pain within the very first week: it felt like a miracle. Within 18 months of conscientiously following this regime, I was walking without a cane & standing again.

Last year, a top nhs physio at the same NHS internationally famous teaching hospital as my lupus clinic, reviewed my orthotics & the rehab regime changing it slightly...I still do the regime several times a week, but not daily now: I can feel that if I miss too many days of the regime, my tendons begin to tighten. So I keep the regime up enough to avoid the agonising pain returning

So, like you, my bespoke orthotics only help so much. Of course I wear them all the time

Now my NHS rheumatology Lupus clinic advises me that all they can do is ensure my lupus meds are effective enough to make it possible for the tendon stretching rehab regime to actually work

To sum up, it is these 3 things that have put a stop to my agonising foot pain:

1. My NHS physio rehab regime of equinus contracture tendon stretching: it is the lupus inflammation that has caused the tendon tightening which has created the Mortons neuroma & bursitis in the metatarsal joints

2. My NHS SLE daily meds: it is these meds which reduce my rate of tendon tightening, allowing the tendons to stretch in response to my physio rehab regime...and it's my lupus meds which have slightly damped down my daily cycle of erythromelalgia burning

3. I wear my bespoke full foot orthotics in sensible lace up flat shoes

Apologies for going on at such length, but I had to fight so hard to get full diagnosis of this complex leg/foot prob and then to do the rehab so that I am now able to stand & walk again with so little pain. This has been a huge thing for me...I can't be sure if our probs are identical, but we seem to have a lot in common. If any of these details of my experience can help you in your discussions with your Drs, I'll be a very happy woman

Hope you'll let us know how you get on

🍀🍀🍀🍀🍀 coco

clova profile image
clova in reply to Barnclown

I have an appointment for my rheumatologist in March . I will let you know how I get on . Thanks again for all the information, I hadn't thought that the ray nauds was part of the problem but I can see it makes sense.

Barnclown profile image
Barnclown in reply to clova

Great & thanks

Clova, I don't wish these probs on anyone, but I am v glad to meet you. you're the only lupus patient I've encountered who comes this close to my version of this foot stuff. Rheumatology tells me that lupus-related tendon tightening is more common in arms & hands, than in legs & feet

Have you been diagnosed with any type of hypermobility? One reason my feet probs were so hard to diagnose is that most Drs thought my hypermobile ligamentous laxity couldn't co-exist with my tendon tightening. Now we know these contradictory conditions do coexist in my case...just as the contradictory conditions raynauds & erythromelalgia exist in my case. And also my infant onset autoimmune condition + my early onset immunodeficiency. I'm told I'm an unusual patient

As much as I hope my story might be useful to you, I also hope your story might be useful to me...I still wonder if some sort of surgery might work for me: the ultra distinguished prof ortho surgeon who figured out the tendon tightening (equinus contracture) aspect of my prob insists he is one of the few who has the skill & expertise to successfully operate on a patient like me....and I do trust him....but even he advises I avoid surgery if at all possible

🍀 Take care

I found buying a footspa really helped ease the pain in my heels and arches and to relax the feet. Also, regular massage has been amazing in helping alleviate the pain in my feet. It is more manageable now, since I have been having regular massages. It is costly, but as Chris21 says, it is definitely worth it as the pain eases significantly. Hope that is of some help to you.

Renu xx

clova profile image
clova in reply to Renu

Thank you Renu for your reply

Hi Clova, I was first diagnosed with RA prior to Lupus. However, my feet suffer more than my hands. I have Raynaud's and Erythromelagia which causes the extreme hot and cold. Sometimes my feet feel broken. I find trying to keep a constant temperature, not staying still for too long, particularly with my feet down helps as this all puts strain on my circulation. Antiinflammatories when its bad. I find any support helps particularly around my ankles and I avoid shoes where I cannot spread my toes when walking. Restrictive shoes cause cramp.

Not technical but small things that help me.

clova profile image
clova in reply to johare

Yes Johore I know what you mean about your feet feeling broken it's agony and I certainly have to wear shoes with plenty of room in fact I now buy a bigger size in shoes

Barnclown profile image
Barnclown in reply to clova

Me too: just to get my bespoke full foot orthotics in, I have shoes 2 sizes bigger.

I have metatarsal domes as well as arch support in both full foot orthotics. Do you have both?

clova profile image
clova in reply to Barnclown

Yes I do

Hi clova,

It looks as though you've received some really helpful comments from the community. I thought that I would make you aware that we also have a factsheet called, 'LUPUS and the Feet' which includes lots of helpful information. You can view it or download it from our website at

clova profile image
clova in reply to Paul_Howard

Thanks Paul I've downloaded some of the fact sheets on this link and have found them very helpful. It seems that there is always something to learn about this disease and things that I thought were separate problems are all interlinked with lupus . Very much appreciated all the replies and information I have received .

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