Chronic foot pain

[tuppenceworth]

Hello,

I was diagnosed with probable SLE about 6 years ago (in my late 40s).

This diagnosis was based on chronic bilateral foot pain. The pain is in the balls of my feet kept me awake at night and I was barely able to walk for 15 minutes. I was given a steroid injection which helped and have been on hydroxychloroquine since.

The pain has not fully gone, but has been better overall, more manageable.

Then 6 weeks ago it came back as fully as at the start. Drs won't give me a steroid jab now, due to potential side effects and risks.

I don't have joint or muscular pain anywhere else. I am not sure if it is Lupus or more down to the shape of my feet and toes (wide and lumpy!).

Does anyone else suffer just from chronic foot pain?

Thank you 😀

[ZA31]

hi,

Yes I had pain in my feet which was quite severe they also gave me steroid injection once and hydroxychloroquine! A year on now it’s definitely not as bad to the extent that I can walk for a while now, however at night the pain starts and my feet also get really really hot to the extent that my partner says they are uncomfortable to touch.

Have you been back to your rheumatologist?

Xx

[tuppenceworth in reply to ZA31]

Foot pain isn't fun is it? We all need our feet.

I'm back in a few days with the rheumatologist so will be asking for another jab. Hopefully that will happen and help me out.

I'm just interested if others with Lupas have had the same localised pain. My rheumatologist said it is rare, and he has been in the business for many years! I'm trying to see what short and long term options are.

Sadly like many things, there is never an easy answer.

Thank you for your reply. For night pain in your feet have you tried amitriptyline? Your GP should be able to prescribe it.

Good luck x

[Jerg]

yes I have the same problem but given nothing for it by the doctors have to manage it by myself. Very distressing

[Nonameme in reply to Jerg]

Me too given nothing for it told “old age and type 2 Diabetes “ Standard reply these days trying to get help dealing with symptoms I have given up with NHS GP its like they have wahwd their hand of me since reaching 75. I even made an official complaint acknowledged and ignored. Sorry to vent on your thread hope you have better luck xx

[Cas70]

I have just had my Hydroxychloroquine dose doubled and it has cleared the boiling hot feet I had at night. My inability to walk far has been diagnosed as lumbar spinal stenosis’s and steroids have helped a little. A remedy for boiling feet is Deep Freeze spray or gel last thing at night

[Jerg in reply to Cas70]

I have that issue too got a spinal nerve root injection in June 2022 . The back pain is gone and the left leg is stronger but not fully but the right leg has gotten worse, still a struggle to walk without fall and find it hard to balance my whole body . Can’t walk far either

[RosieA]

Ah yes, feet- I am a veritable martyr to them. I have UCTD and as I type, am feeling my right sole throb. I am told it is Plantar Fasciitis. I had it constantly for nearly 18 months. Had steroid injection into it. Perfect. Had flu jab - flared and back it came. I am under physio to try and resolve it but experience tells me this ain't going to happen. I now have hip bursitis caused by my uneven gait (trying to hobble with the pain). Once walking (in sturdy Birkenstocks) I am OK but as soon as I sit and take the pressure off them they start to throb. Getting back up on them is very unpleasant and at their worst - brings the proverbial tears to my eyes. Finally, I am hoping that I may get another steroid injection into it but I know they are reluctant to keep doing this. Is yours Plantar F do you think!

[tuppenceworth in reply to RosieA]

I have had physio which didn't really help. I saw a specialist podiatrist (privately) who helped give good advice and helped with insoles. I live in walking books or boots from Wider Fit Shoes widerfitshoes.co.uk/ as they are designed for foot problems and are big enough for specailis insoles.

What I have isn't plantar f as it's in the 'wrong' part of my feet. I just get pain inside my balls of my feet - both at the same time and level.

I'm aiming for another steroid jab to see if that helps. I'm trying to be upbeat but at times it is hard because we all need our feet!

[redmaggie]

Hi there, I'm another foot pain sufferer. I have erthromelalgia and reynauds, plus a new diagnosis of UCTD. I loved walking but now have to ration myself. Despite the horrible pain in the balls of feet and toes, they look pretty normal between over and underheating. I think I could write a book about my feet! Like others, I am still searching for the perfect shoe. I find hotter brand are good but expensive (but I only buy when on sale). leather shoes are the most breathable. I tried hydroxychloroquine recently but stopped after 3 months. I had persistent gut disturbances and felt generally more unwell. It was worth a go!

[tuppenceworth in reply to redmaggie]

Yes, my feet look pretty 'normal' too. The pain doesn't show through does it.

Have you tried Wider Fit Shoes widerfitshoes.co.uk/ They are not cheap, but I have had them (and relied on them) for years. The shoes last a long time.

Good luck.