My Feet

It's been very hot recently hasn't it and I'm sure I'm not the only one of us feeling it. The usual covering up and sun cream challenge has started. We went camping last week and I managed quite well. The sun was out, I wore jeans and a rash vest, sunglasses, hat, factor 50 on my face etc. I have been careful with my feet too. I haven't worn my sandals every day, I might have worn then 6 or 7 days so far. But every time I wear sandals my feet get very dry, itchy and swell up! Even when wearing Factor 50 on them. So I have the usual problem of being a woman and wanting to wear pretty sandals on my feet v. covering up and having really sweaty, smelly feet. It's hard to get the balance right. I tried to explain it to my Dermatologist this week and whilst he understood the dry skin, itchiness and swollen thing he didn't get the wanting to wear sandals bit, being a man. Ha ha. It's bad enough having to cover myself up and sitting in the shade etc but the feet issue is difficult. It's only June and we have a couple of months of summer yet. Sometimes it's the small things that are difficult to deal with. I do have photos of my feet from September last year and they were huge by then and very dry. In fact getting my tan leather Fit Flops out this year, I put them on and they are "baggy" on me - I think my feet were big and stretched them. They look huge on me. Anyone else get this? (I have Subacute Cuntaneous Lupus - SCLE). Hope you are all keeping well in the sun.

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  • Horrible isn't it, Wendy?! Feet can be such a prob for us...and in different ways depending on our type of lupus.

    My infant onset SLE is the vasculitis type & as I went into menopause, the raynauds I'd suffered with since childhood became simultaneous with erythromelalgia...which means my feet & hands & face feel cold & hot at the same time...the burning hot thing runs in a daily cycle 24/7 even in cold weather...causing overheating & swelling that affect my choice of footwear pretty much in the way you're describing. I get the dryness & soreness too...all year round I slather on l'occitane Shea butter & wear sandals inside (πŸ˜‚ Orthopaedic Birkenstocks with built in bespoke orthotic insoles because of the way my SLE & EDS have affected my feet over the decades (am now 62)). I can't wear off the peg sandals...but I can imagine the swelling could stretch them... 😟

    I see a podiatrist nurse every month, who monitors the condition of my sad feet & cares for my toe nails...meanwhile every week I have to file off the hard skin or my feet become v's a lot of I am v much relating to your post! I could go on & on about all the other conditions affecting my feet...but will leave this at that! πŸ˜‰

    πŸ€πŸ€πŸ€πŸ€ coco

  • Hi Wendy, it's a nightmare isn't it!

    I have piles of unworn shoes, yet I live in my sketchers go Walks and my various pairs of fitflops.

    Doctors never seem the understand about shoes do they. When I go shopping for outfits my main consideration is, what shoes could I wear with that. Hence I seem to live in trousers.

    My joints in my feet and ankles are very painful, the tops of my feet swell and itch like crazy, ( I usually carry a tube of e45 itch cream in my handbag), because once they start I can't leave them alone!

    Then at night even though we have the lightest duvet I could buy, I have to stick my feet out of the end of the bed as they just burn like mad!

    Maybe we should all get together and design comfortable pretty shoes for different occasions.

  • Thank you for your reply. I think sometimes having lupus makes me feel ugly. I can't wear strappy vests and shorts and get a nice bronzed glow like my friends. I can't wear swimwear on the beach. I have to cover every inch of me and hide and then I feel whiter and paler than ever. It makes me feel quite unattractive. As my diagnosis is still relatively new - Oct/Nov 2013 - it's still trial and error for me. Like I said last summer I wore my sandals more but I paid for it. I need to take more care this year. Frustrating. Interestingly, I have never got on with E45. I think I itch even more with that. Cetraben does not bring me much relief either. I have tried loads of things over the years, Holland & Barrett natural organic products etc. I have started buying Aveeno. It's working for me, at the moment and my skin does feel softer for it. Hopefully that will work just as well on my feet when I need it. Good luck with your feet this summer.

  • Seriously, and soberly Wendy, but you are not abusing your delicate skin either. Be like Nicole Kidman, pale and interesting!



  • I'm also new to this club, diagnosed 04/14 although I had a diagnosis of inflammatory arthritis before that, lupus came as a complete shock, right at the same time as the sudden death of my mum.

    Sorry to hear that you have to cover up so much, I wear factor 50 on my face all year round but just take sensible precautions on my body, I try not to sit in the sun but I don't have too many problems.

    Ironically I got a letter from my rheumatologist today, informing me that my vitamin D levels are very low against I have to restart the fulcrum d3 again, which I hate as it makes me very thirsty all the time.

    So the love/hate relationship with the sun goes on.

    Oh hum ☺

    Don't worry about being pale, when your friends all have wrinkles from sitting in the sun, you will be glad you were a shady lady.

  • Sorry for your loss...

    Btw, I love your saying: "be glad you were an shady lady" LOL

  • Do you know you can get Aveeno cream off your GP? Wendy

  • I didn't know that! I'll ask next time I'm there. Thank you!

  • I get it on repeat prescrition 2 X 300 ml bottles, I find it very good

  • Such attractive pictures you paint, coco and creaky, thank goodnss we dont have smelly mail yet! Ha ha

    Seriously, it is the thin end isnt it? I too wear sketchers because of my newly diagnosed lupus flat feet, they have arch supports, they cover most of my feet and are light to wear... hot though. With using my scooter or chair, I drape my sunproof wrap over legs and feet which is loose and cool and use my sunproof hat and umbrella for my top half even though covered as well.

    Yes, serious thought needs to be given to new footwear for us. How about normal sandals with an anklets, like hair bands, from which drape cool fabric which keeps us cool and covered. Mind you I cant get rid of the image of the feathering on the legs of shire horses. And you couldnt see your shoes after all! Hm more thought needed!

    Defo good moisturiser helps


  • I love to idea of shire horse sandals!

    I'll get right on to it πŸ˜‚πŸ˜‚πŸ˜€

  • I am also slightly hypermobile & slightly flat footed. The podiatrist told me I could correct it myself and wear "sensible" (yawn) shoes with an inch heel. No flat shoes. 😁

  • Well, I can't say that I have that problem, due to rash/blister on right foot I have had to go barefoot for 2 years. Everything I do, everywhere I go, I am bearfoot. (I have gotten use to being barefoot, it feels natural, now I don't want to wear shoes, I had rather be barefoot).

    I do understand what you go through, we have to adapt and overcome. Make the best of what lupus throws at us. My feet swell all the time. I have found nothing that will keep them from swelling?

    Live life to the fullest!


    "The Barefoot Gardener"

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