Lupus and Feet: Hi everyone, I posted on here at... - LUPUS UK

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Lupus and Feet

Leenie0811 profile image
43 Replies

Hi everyone,

I posted on here at the weekend with some photos but there wasn’t much of a response. I’ve been having issues with my feet for the past few months, increasing pain within my feet as well as swelling from the ankle down to my toes. Does anyone else get this?

Also I keep finding strange patches of dry skin even though I look after my feet and sometimes get hard sores mainly on my toes but one has appeared on the bottom of my foot. Initially I thought it was some kind of scab but it doesn’t look like it is the more I’ve looked at it. Sometimes the sores itch but they can be painful too. I have Raynaud’s and my feet have been hard to keep warm with the U.K. weather changing at the moment. With the change too my shooting pains have come back in my feet! Any suggestions on fighting the foot flares? Currently in two pairs of socks and feet are like ice

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Leenie0811 profile image
Leenie0811
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43 Replies
suzannah16 profile image
suzannah16

I have had assorted pains in my feet for years. I know some of it is osteoarthritis but the rest my rheumy just dismisses.

Leenie0811 profile image
Leenie0811 in reply to suzannah16

That’s a shame it is dismissed I find impact on the feet is horrible because I literally can’t do much and love to be up and about!

suzannah16 profile image
suzannah16 in reply to Leenie0811

exactly. without my feet I can't do anything. most of the time I can't even wear socks let alone shoes

Leenie0811 profile image
Leenie0811 in reply to suzannah16

Ah I need socks otherwise my feet are terrible

CecilyParsley profile image
CecilyParsley in reply to suzannah16

Hi Suzanna Cosy feet do extra wide socks. They are the only socks I can get on my badly swollen feet. The bed socks are so soft warm and fluffy, my best friend in autumn and Winter xxx

suzannah16 profile image
suzannah16 in reply to CecilyParsley

thank you, I will google them. although mostly my feet are burning hot but don't go red.

CecilyParsley profile image
CecilyParsley in reply to suzannah16

Mine do go red t which point I cannot bare anything on them. I was so relieved two years ago to be able to get 6 EEEEE boots with fur lining. Bliss xxx

suzannah16 profile image
suzannah16 in reply to CecilyParsley

I go barefoot as much as possible. lucky you got such wide boots.

CecilyParsley profile image
CecilyParsley in reply to suzannah16

Me too but my best thing ever are Birkenstocks. My OT advises against them but honestly they support my feet so well xxx

suzannah16 profile image
suzannah16 in reply to CecilyParsley

I like dunlop memory foam toe post sandals as they mold to my feet. my podiatrist said no toe post sandals. the shoe inserts she gave me made my feet worse.

JCZW profile image
JCZW in reply to suzannah16

Hi Suzannah16 I bought the memory foam toe post sandals after you recommended them, best ever sandals I've bought. My podiatrist told me to wear whatever is comfortable for me . She said every one is different and you should just wear what is more comfortable. I appreciated her being honest.

suzannah16 profile image
suzannah16 in reply to JCZW

different ideas from different medics, just shows they don't know much. glad you like the sandals.

JCZW profile image
JCZW

Hi Leenie0811 I also have raynaulds and my feet really get very painful and sometimes I find it hard to walk. I saw a podiatrist who was very helpful, she talked about keeping my hands and feet warm at all times. She also contacted my rheumatologist and requested feet x Ray's, which I had done but haven't had any feed back yet. Now the weather is changing I'm constantly shivering and my hands and feet are suffering but I've bought sheepskin slippers and thick socks which is helping. I'm sorry that I'm not very helpful. As the podiatrist said thete is no cure. Take care

Leenie0811 profile image
Leenie0811 in reply to JCZW

I think when I speak to the rheumatologist in a couple of weeks I’m going to mention my feet because I did see a podiatrist before I was diagnosed. I had some insoles but with moving house I’ve lost them!

Leenie0811 profile image
Leenie0811 in reply to JCZW

I’m also really cold with the change of weather it’s brought on a lot more issues and I’m always finding new things online to try and keep hands and feet warm

Krazykat26 profile image
Krazykat26 in reply to Leenie0811

I invested in some leg warmers last year..reminded me of back in the day when they were 'fashionable' I had a pair back then!! I've found them to be great coz they warm the shins n calves too!! So this year I've got some wrist warmers on the same principle..keeping the wrist warm helps the hands. I've yet to go out with them on but I've been wearing them indoors n they help to keep my hands warmer..without restricting my fingers. Just a thought? 🌈😽😽Xx

Leenie0811 profile image
Leenie0811 in reply to Krazykat26

That sounds a brilliant idea! I’m only out of the house for work one day a week so for the rest of the time I’m at home. I think it’ll be a good addition to the warm brigade haha. I’m going to get a little box with all the things that help like a little sos box x

Krazykat26 profile image
Krazykat26 in reply to Leenie0811

Make em groovy so it lifts your spirits too!! Think they'll be outta the box for much of the time..like everyday wear!! 😹🌈😽😽Xx

Wrist warmers
MrsMarigold profile image
MrsMarigold

Hello Leenie0811. Sorry for your poor feet. Many people on here have Raynauds. It sounds like you should try for an appointment with your GP or dermatologist

Or rheumatologist. Possibly you have something else along with it. I have not

Been able to walk bare foot now at least 20 years. The collagen in my feet has worn away and there exists no more soft tissue.

I have arthritis and some of my toes are painful and have sores at the knuckles. I hope this helps. Titters

Leenie0811 profile image
Leenie0811 in reply to MrsMarigold

I have a telephone appointment coming up in November so I’m going to talk to him about my feet. I take nifedipine morning and night which does help sometimes but the change in the U.K. weather is making it worse.

Susieliz39 profile image
Susieliz39

Hello Leenie.I too suffer from Raynauds and my feet in particular at this time of year come in for a battering. I use hot hands disposable foot warmers in my shoes and boots and they do help to keep my feet toasty. You can get them off Amazon and although are not particularly cheap, to me it is money well spent. I get chilblains too that drive me bonkers! I find balmosa cream can help calm them down and relieve the itching. Hope this helps x

Leenie0811 profile image
Leenie0811 in reply to Susieliz39

Thank you for the recommendation I’ll have a look for them on Amazon I’m always on there for different things to help!

Whitemagnum profile image
Whitemagnum

Hi Leenie0811, I'm sorry to hear about your poor feet. I too have Raynaud's+ my feet can suffer badly. It sounds like chilblains for the hard,sore bits on your toes but I'm not sure about the dry,itchy patches or the shooting pains. I agree with suzieliz39 who said to use "hand warmers" in your socks(the disposable things you open,shake+they immediately heat up+ stay hot for quite a few hours). I was given Protopic 0.1% ointment (Tacrolimus monohydrate) to apply thinly once a day to my hands for chilblains so maybe you could ask your GP about it for your feet? (It wasn't suggested for my feet at the time as my hands were the big problem when I was prescribed it 2 years ago). It does help but obviously not great if you're washing hands a lot! Whereas with feet, I could imagine it would be much more effective. That,plus the wee heat pads+2 pairs of cosy socks+slippers might give you a bit of relief? Definitely get the shooting pains looked into- ask for a podiatry referral at your next lupus appointment or even through your GP. Sorry I can't help more. Let us know how you get on+good luck. Sending you good wishes!

Leenie0811 profile image
Leenie0811 in reply to Whitemagnum

Thank you for all the help I’m making notes for my next appointment so hopefully they can do some referrals but in the meantime I’ll use the hand warmers. I’m only leaving the house once a week at the moment for work and our office is nice and warm usually if none of the workers put the air con on! The day I go is quiet so I haven’t experienced that yet. Feet are the worst I think because it limits what you can do in a day.

Ianflashdavies profile image
Ianflashdavies

I get the opposite my feet are always hot. Too hot. Swelling is now normal along with pain, which for some bizarre reason has now started in my ear, the actual ear.

Leenie0811 profile image
Leenie0811 in reply to Ianflashdavies

Very rarely if I’m on my feet they’ll be really hot until I sit down then within half an hour they’re freezing again. Usually when I’m cleaning but I’m looking to get someone to help with this now as I’m too exhausted for big cleans.

Villagelife profile image
Villagelife

Hi I'm undiagnosed. I have raynauds and get chilblains in cold weather. Last year was particularly bad, I had very sore toes, the tip ends would then harden into thick skin & peel off. I used a cream for hard skin on heels as recommended by the pharmacist. I dont really know if it helped or not but I'm trying it again now. I cant remember the name & I'm not home. Im also going to order gloves & socks with silver threads. They are supposed to be very good for Raynauds.

Leenie0811 profile image
Leenie0811 in reply to Villagelife

Oh I hope you get diagnosed soon lovely, I’ve been using a butter moisturiser and recently tried a foot peel pack. Didn’t do anything for the skin it said 7-10 days though and I’m on day 6, still waiting haha. Hope you’re okay though x

MusicalFurbaby profile image
MusicalFurbaby

Hi Leenie0811, hope you are now getting some helpful responses! The pain from your ankle to your toe sounds like arthritis to me, I get similar pain through my thumb joints. I have sores on my toes too, but they are not caused by Reynauds. The doctors used to think they were chillblains, but I have since been diagnosed with vasculitis. Which makes way more sense coz my feet were never cold.

When the doc thought it was chillblains, he told me to wear wool thermal socks, the kind hikers wear on the alps. Try those (if you haven’t already) as I believe the real trick is to keep the feet warm. In terms of the sores themselves, I’ve only had relief from one topical cream called Anusol. It’s for haemorrhoids but it works great for the unbearable itching and pain on your feet!

Leenie0811 profile image
Leenie0811 in reply to MusicalFurbaby

Yes so many responses there’s so much to try out and mention at the next appointment. I do have walking socks from when I used to go out walking - sadly I can’t manage long distances now so they’re sitting in a drawer somewhere so I’m going to fetch them out and try them with the hand warmers. A nice bath sometimes helps as well but I’m worried of falling asleep in it as my fatigue is horrendous at the moment, hence why it’s taken so long to respond!

Leenie0811 profile image
Leenie0811 in reply to MusicalFurbaby

The pain in my ankles and feet is really bad it stops me from doing anything, I hope maybe I can get some scans from the next appointment and they can get back to me on that. Last year (2020) is was nowhere near as bad but this year it’s getting so much worse and I’m doing less as time goes on.

MusicalFurbaby profile image
MusicalFurbaby in reply to Leenie0811

Sorry to hear how bad your pain and fatigue is at the moment. If you get some scans they may be able to rule out anything sinister, but be pre-warned, they don’t show up everything! I’ve got rheumatoid arthritis in several joints, and while some show up on scans, others don’t, so you may not get any answers from xrays etc. Hope you get some joy from the hand and feet warmers, it sounds like keeping feet warm and preventing cold works well for you!

Hoofprints profile image
Hoofprints

I too have swelling and pain in my ankles, but no skin lesions and no (diagnosed) Raynaud's.

I had an ultrasound which showed inflammation in the tendons of my ankles. Almost a year on, I'm now also getting my toes trying to curl under me and have no idea what that's all about!

Is it worth your GP sending you for an ultrasound? X-rays don't show up the inflammation of the soft tissues so much. I have a form of vasculitis that is lupus-like and am treated with hydroxychloroquine. I also have inflammatory arthritis.

I hope you get answers soon. 🍀

Leenie0811 profile image
Leenie0811 in reply to Hoofprints

I’ll ask them for an ultrasound, they did an MRI on my hips and found Edema/oedema however you spell it around the joints and muscles so could be happening in the feet I guess?

Buffer profile image
Buffer

I use Sudacream on the chilblains and copper infused support stockings from Amazon. I have Reinholds and very bad arthritic big toes that are swollen heel pain and shooting pain it’s awful.

Leenie0811 profile image
Leenie0811 in reply to Buffer

Sudacream is so useful for many things I’ll have to try that too! I have some copper infused socks but the toes are exposed so maybe a full sock would help better?

CecilyParsley profile image
CecilyParsley

Hi Leenie, I empathise with you. My feet are the source of so much pain and discomfort. I don’t get scabs but they are either boiling hot or freezing cold. I get shooting pains and aching, badly swollen ankles and feet to the point where I struggle to walk or articulate the ankles at all. The only relief I have had pre Covid was through a chiropractor. I have to say Rheumatologists, Orthapaedics and Podiatry have consistently failed to help. I really hope that you get some answers and relief xxx

Leenie0811 profile image
Leenie0811 in reply to CecilyParsley

I was looking into some alternative therapy before Covid but then lockdown took place and I haven’t looked since, I think I’ll try something like that if it helps it helps doesn’t it?

CecilyParsley profile image
CecilyParsley in reply to Leenie0811

Absolutely it helped me. I was sceptical, really I only went for my knees one wouldn’t bend and another kept dislocating which was awful pain. When he put a thrust down on my ankle I screamed but the pain was just immediate then huge relief. When he pulled each toe they cracked and more relief. It was the first time in years that my feet were pain free. I cannot wait until they reopen to book myself in for a full body tweak. Good luck, let me know how you get on xx

RachelD1972 profile image
RachelD1972

Hi, I have RA alongside Discoid lupus. The RA affects my feet more at the moment. I’ve found the sheepskin shoe liners help so much during winter. I have to buy wider fitting shoes/boots to allow for swelling so plenty of space for them. I would get the sores/scabs checked. My dle can cause these just about anywhere on the body x

Leenie0811 profile image
Leenie0811 in reply to RachelD1972

I do have a pair of Ugg boots which are so warm, my feet are really narrow (size 3 U.K.) so I get away with kids shoes a lot. The swelling makes it hard for shoes so maybe an extra wide would help. So many different fluffy socks and slippers as well! My mum has some fluffy insoles I was looking at getting too, thank you for the suggestions!

Paprika60 profile image
Paprika60

Hi, try some essential oils such as camphor (warming) mixed with circulation boosting oils such as rosemary and black pepper oil. Mix with grapeseed oil (less sticky) and massage your feet and legs all the way to the knees. They work. I do this every morning and whenever I feel the need. You can find many suggestions for oils on internet. You might also try acupressure massage or Bowen massage. Good luck.

Leenie0811 profile image
Leenie0811 in reply to Paprika60

Defo going to try this I’m always trying to get my boyfriend to massage them! Thanks for the help!

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