Barefoot Because Of Lupus: I am having a another... - LUPUS UK


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Barefoot Because Of Lupus

Tiras profile image

I am having a another flare, the skin on my feet is so thin that shoes rub blisters and or raw spots. My doctors have told me and even given me a statement to keep with me, that I am not to wear shoes. For those of you who don't know me I have had to go barefoot for over 3 years. Yes, I have to do everything, and go everywhere barefoot. Also now the lupus has effected my nails, and I have to put a nail treatment on every week. (Laura my wife gives me pedicures some time) so, what is suppose to be a nude/neutral color looks light pink on my nails, not to mention extremely shiny. Not what a guys toes and fingers should look like!

Photo shows blisters on my right foot.

12 Replies

I hope your flare settles down again soon, you are lucky the weather is warm with you ! I wear thermal socks all year round as i have secondary raynauds 😀 best wishes.

Tiras profile image
Tiras in reply to weathervane

Thank you! Yes I live in the USA in the state of Alabama. Today doing some things outside, it is 60 degrees Fahrenheit. So not bad to have to be barefoot. On top of that I have nerve damage due to lupus also, so not much feeling in my feet anyway.

weathervane profile image
weathervane in reply to Tiras

Hi there , i live in Ireland and it’s actually 10 degrees here which is not bad for the time of year. Its not good that you have decreased feeling in your feet , do be careful of injuries .

katidid profile image
katidid in reply to Tiras

I live in CA and when my feet swell the only thing that works it to place them on top of an ice pack. I even sleep with them on ice. I'm not sure if you get burning pain on the bottoms of your feet, but that happens to me as well. I can only kind of relate to being shoeless. I couldn't wear shoes for about 4 months. I can't imagine what it must be like to have to deal with that for years! I'm so sorry! Any chance you've looked for a more progressive dermatologist? My Rheumy just recently told me to see one for my face rash and a now permanent case of vasculitis on my face that was never there until last year.

Random question: by any chance do your lower legs swell up? My feet are the worst when I have edema in my calves as well. reducing the pressure in my legs seems to relieve some of the pain in my feet and they also shrink a little.

Best of luck to you!

Tiras profile image
Tiras in reply to katidid

Yes my feet swell but, do not burn, I have nerve damage from lupus in my feet so, not much feeling. The 3 middle toes on my right foot feel like they are asleep all the time.

I did go to a dermatologist at UAB in Birmingham, and she agreed with my local dermatologist, so it is easier for me to drive 20 miles compared to 100 miles for the same diagnosis.

I get rashes also it is odd most of mine are on my feet, upper thighs to waist, (yes including private area). Arms and back. I very seldom get anything on my face.

I have hair loss, thinning badly on my head now, but, I have absolutely no body hair from the neck down, (again no hair in private area either).

Yes I do swell lower legs and feet.

As I have said before.

"Lupus effects us all differently, but, yet the same. That doesn't make sense but, neither does Lupus"

Wishing you the best!

Hi Tiras good to see you posting again but sorry about flares. My feet and ankles are now pretty numb from neuropathy and my toenails are thick and shiny and look like they have a pearly slightly yellow varnish on them always with groves each way. Plus an ugly looking hole in one large toenail due to a subungal corn which had to be removed by drilling as it was making my toe very sore.

I’m in Scotland and have circulation problems due to the neuropathy so I barely even go barefoot in bed!! My pale dead looking feet are like Boo Radley in To Kill a Mockingbird and peer out at me when I’m climbing into a hot bath in effort to warm them through. Couldn’t be more opposite to yours really!!

Tiras profile image
Tiras in reply to

Good to hear from you again! Sorry for all of your problems, I hope you get better, or like me a Good as we can get?

I bet it is getting cold in Scotland now?

I have not heard from Barnclown, I sent her a message, but no response. I have not seen any post from her recently. Do you know how she is?

in reply to Tiras

She’s fine - just having a break from posting here and trying to save her precious and scare energies I believe. We chat occasionally and she does still like posts, letting us know she’s alive and okay.

Also she posted a lovely youtube video made for Lupus UK starring her and a friend last month. Scroll through the search bar for her and you’ll find it. X

Tiras profile image
Tiras in reply to

Good to hear she is still with us, I was starting to get worried. If I had not heard anything soon, I was going to send her an email, and I may still do that?

in reply to Tiras

Well she’ll probably just contact you when she’s ready Tiras. Sometimes it’s hard work communicating one to one when fingers are sore or whatever - that’s what I find and have to explain I’ve gone quiet for a reason that I need to hibernate from the Internet - screen glare etc. I can’t recall her reasons but she did post us all to explain so just read her posts to catch up maybe? X

Tiras profile image
Tiras in reply to

I understand completely.

in reply to Tiras

Ps someone posted asking after you too as you disappeared and were missed! X

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