Our Topic of the Month discussion for July is 'Caring for your Feet'.
Problems with the feet are common in the general population, but they can have even more of an impact for people with long-term health conditions such as lupus.
Your feet take the weight of your whole body, so foot problems can quickly lead to discomfort and affect the way you walk. This can in turn cause knee, hip and back pain.
We want to hear your experiences of taking care of your feet. Do you wear particular insoles or shoes to help protect the structure of your feet? Do you have any treatments or therapies to keep your feet in good health? Do you see a podiatrist or other specialist?
We would like to hear all of your tips and experiences and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at
Not sure I can add much to this (famous last words) but here goes.....To look at my feet seem fine but on the inside there's osteoarthritis and sensation loss. I'd always thought SLE was responsible for my losing feeling but was told its more likely to be OA and sciatica that have caused the nerve damage. I've had both for many many years
Rheumatology referred me to a podiatrist clinic a few years ago in the center of the city and the very first app revealed sensation loss. I was later sent off to the podiatry and foot dep at another hospital and told to ask for "arthritic shoes". The young lady who examined my feet was amused and said there is no such thing as arthritic shoes. She asked me what it was I wanted, bit embarrassing, I said I'm looking for comfortable footwear. They supplied insoles and warned me I might have bruised insteps until I got used to them. She explained about weight distribution and effects on feet that arent properly supported. I wore them for a time, didnt get bruised insteps and found the raised instoles quite comfortable for a time. They werent very soft, quite firm and if I walked for some time they added to the discomfort
I had repeated apps at central clinic every 3 or 4 months for a couple or more years, persuaded to go by the 2nd podiatrist I saw who was interested in lupus, and was more than happy to trim toe nails and hard skin. I'd been struggling with them for a long time. I saw her every time I went. She spotted what I'd thought was a blue bruise under one foot and sent me off again to have it looked at. It was bursitis but because it wasnt troubling me they decided to leave well alone..."come back if there are any problems"
On the last app my usual lady wasnt there, she'd "gone home early" and it was a much younger one I saw. She greeted me with "you're rheumatoid arthritis arent you Mrs Jackson?" Not a good start, no I'm not its OA.....quick glance at her computer screen, then she told me to take my shoes and socks off. There's nothing wrong with your feet Mrs Jackson, they look fine to me, you shouldn't be here, you're using the system...I didnt know what to say. She reluctantly offered to trim my nails and I reluctantly climbed on the examination bed. It was so uncomfortable I was glad to get out. The young lady didnt let up once telling me she didnt know why I was there I began to wonder when I left if indeed I had abused the system. Didnt go back again. Apparently the system was being streamlined and according to her there was no place for people like me
So my biggest problems are finding suitable footwear, I've tried them all, being able to walk comfortably and making sure my toe nails are cut safely. I cut them recently and couldnt feel a thing. When I stretch my feet it feels like I have tendons and bones made of steel. There's no cure for OA so its a case of accepting it living with it as best I can. Told to take paracetamol to help with any discomfort. As someone who enjoyed a good brisk walk its been very hard
I too have OA, plus Sjogrens & COPD and it is really just a matter of finding what is right for you. So sorry at the attitude of the last person you saw at your clinic. I gave up on Podiatrists years ago, they all seem to have "attitude." Find a good Chiropodist and have regular appointments, mine is very re-assuring with plenty of good advice when asked. I notice my toes are beginning to ache, along with a knee, I buy Pernaton and use this twice a day to good effect. Plus change heel height and make sure shoes have low impact on surface with soft inserts from Scholls. Good luck and hope you find some comfort soon.
Hi there. Croc shoes fantastic get cheeper ones at super markets and clothes shops. Really a big comfy bounce in my step these days we'll still slow but much more comfy
Sjogrens here as well, and SLE. Been a struggle to come to terms with it all and accept that mouth gels, moisurising mouthwashes and toothpaste and sprays are part of the daily routine...sipping drinks with dry food and cheek bites, inflamed gums..etc etc
I've often thought about getting a chiropodist I've looked online to see what we have locally but not booked anyone yet. My son is keen for me to do that just once a month
Not heard of Pernaton so googled it but I dont think I'll be buying. Thank you for suggesting it. I use moisturising creams as much as anything and sometimes give my feet a massage at night before going to bed, and I wear flattish shoes, maybe a slight wedge. For me the main thing is the thickness in soles and how well they absorb shock, making sure my toes aren't squashed. Cloud Steppers from Clarks are good, I have 2 pairs of ankle boots, sent for the shoes but they were a smaller fit than the boots so had to go back....and assortment of insoles. Never bought Scholls, might try those, thank you
Thank you so much for sharing your experiences. I'm sorry to hear that you haven't had a lot of success and that you were treated so dismissively by the young podiatrist. Have you spoken with any arthritis organisations (such as Arthritis Care/Arthritis Research UK) about their recommendations for footwear?
No I havent Paul. I sent off for a leaflet some time ago from Arth Care UK but no mention of footwear in it. The only people I've talked to have been medical professionals and a health trainer at our gp surgery who was very helpful. It was the first time I'd been able to unload how I was struggling, more with depression and pain, and being able to share it face to face with someone was just what I needed back then. They rang my home from time to time to ask how I was and the option to see them again is still open as far as I know
The podiatry clinic had an assortment of booklets from different companies and I took one of those home, think it was a Hotter one. I eventually found a Clarks ankle boot called Cloud Steppers with the underfoot comfort I was looking for and thats pretty much it
This booklet by ARUK is pretty good and includes a section about footwear. You can either request a free print copy or download a pdf from the website. arthritisresearchuk.org/sho...
Chris, I just want to make sure, when you said you ordered it... that you are aware how easy it is to click on the download arrow. Thank you Paul, this is a very informative booklet!
Best footwear really is trainers/sports shoes - tons of padding and support to protect the foot running around a track or whatever is also great for painful feet!
Like many other lupies I have Raynaud's, Erythromelagia and peripheral neuropathy. This combination means that my feet and hands are really dry and I have lost the fat pads that should cushion my heels as I walk.
During the summer months, the Raynaud's is fairly quiet but the EM in my feet is a nightmare, mostly in the evenings and at night but if my feet get too warm during the day, they swell and get fiery red and very painful. I have tried NHS insoles but they are too hard and they make the shoes too small when I have one of the EM flares.
I have found Skechers shoes and boots in one size up from my pre-EM size don't hurt my poor chilblainy toes in the winter. I wear them all the year round because they are really comfortable and very light but I'm reluctant to go two sizes bigger because the EM flaring doesn't happen every day.
i'm planning on seeing privately a local Podiatrist who also works with a neurophysiotherapist. They may be able to supply a custom made insole and advise on footwear as well as help me re-learn how to walk properly. I will keep you posted.
I actually settled on Pilates and Neuro. Pilates to realign my turnout, which had displaced my knee and hip. Neuro to mange the neuropathic pain and nerve entrapment.
Hi there. Having had a lot of pain and swelling in my feet initially 7 years ago - I now have very dainty looking feet again. But they are still very painful and also quite numb! They discolour a lot too with livedo and Raynaud’s and my padding seems to be receding badly on the ball of my feet.
I think the numbness is only on the outside for a few layers but the pain still affects them is deep. I thought the combination sciatica and neuropathy were the cause but my neuro physio said this isn’t the case with the pain I’m presently experiencing - she thinks it’s the Sjögren’s/ RA type stuff is flaring because I struggle so hard in the mornings with walking. I think it’s my tendons and trapped nerves eg Morton’s neuromas in both feet and some plantar fasciitis. I am struggling to walk in my left foot now but butter wouldn’t melt in terms of normal appearance!
Basically our feet and hands take the brunt of most things so are going to be often badly affected by the combination of ageing and highest usage. This is why, with RA, rheumatologists don’t include them in diagnosis or disease activity assessment apparently? Many with RA don’t even have their feet examined at all. It’s something people shout a lot about on the RA HU.
I just have to wear black sketchers now. I used to see a great podiatrist under the nhs but I relocated and the local NHS dumped him so he only does private practice now. My GP used to refer to him as the Wizard of Oz because he came up with stuff that would bring patients in demanding imaging or testing. He is Rheumatology trained and in his mid 50s so has loads of experience and a kind of canniness that is rare.
But the thing is that he is invariably right in his assessment of my problems. He just doesn’t look at feet in isolation to the rest of us. I just wish he was nearer so I could get to see him more often as he always sorts me out very well for only about £32.
The first time I saw him he almost shouted at me to see my GP once I was home and ask for a month of Prednisolone to get my flare under control! I didn’t know I was flaring but he could see the first moment I hobbled in, quite newly off Methotrexate and Hydroxy.
He once gave me steroid injections into my metacarpals on both feet once when the swelling and pain was awful. Then he made me toe cosies for my socks made of lambswool for Raynaud’s and neuropathy. He cuts insoles out from a sheet of thick grey rubber of various thickness on the spot or orders special orthopaedic insoles.
Last time I saw him in September with a sharp pain and splinter haemorrhage in my big toe. I’d been hobbling about on it for a few months and GP reported it to my vascular dr. But when I eventually saw this great podiatrist he just laughed as soon as he saw it and said I only had a corn trapped under my toenail, drilled a hole in my nail to release the splinter haemorrhage and cut out the corn to release my nail. Bingo - and no pain beyond the quick drill. I went on my way toe pain free!
So a good podiatrist is worth their weight in gold.
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I began to wonder when I left if indeed I had abused the system. Didnt go back again. Apparently the system was being streamlined and according to her there was no place for people like me
I've looked online to see what we have locally but not booked anyone yet. My son is keen for me to do that just once a month
