Raynauds : Does anyone have raynauds? It can be... - LUPUS UK

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Raynauds

Judylynne profile image
18 Replies

Does anyone have raynauds? It can be 100 degrees and my fingers and toes are purple. I'm the only one that wears mittens in the summer. My feet are always sensitive to walk and touch. I wear sox or closed shoes so they never see the light of day. I've noticed what looks like toe nail fungus on my big toe. It's embarrassing and ugly. I'm wondering if wearing sox most of the time has caused this or if it's Lupus related. Has anyone had this problem???

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Judylynne profile image
Judylynne
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18 Replies
kyliesinead profile image
kyliesinead

Hi there, yes I have raynaulds which has worsened as time has gone by. My fingers and toes are often white while the rest of my hands and feet are purple and red. I was given the anca test for vascular problems but this was negative. I suspect it's lupus related but so far I don't have a firm diagnosis.

misty14 profile image
misty14

Hi Judylynne

I have been treating my foot with a fungal nail infection, had treatment from the chemist which has worked well. They can be caused by steroids or feet being hot in sox too much as the fungus thrives in hot damp conditions. You've done a good job treating the Raynauds! I have it too and take a drug called Sloz em for it which has also been helpful. Hope that's helpedX

Judylynne profile image
Judylynne in reply to misty14

Thank you. I felt I was all alone in this.

Lupdaloop profile image
Lupdaloop

Hi, I'm sorry to hear of your troubles, I too have raynauds and I get it in my fingers toes and my tongue! The first time I got it in my tongue I was petrified! I too have fungi looking toes, I agree not a great summer look , but then I don't get my feet out very often as they're always so damn cold!

I've been told by the Rhuemy nurse that I have some kind of connective tissue thing , I take anti malaria tablets for this which seems to have helped with my flaring joint pain, however I don't take anything for the raynauds, I'm wondering if I should be? Like you it could be 90 degrees and I still get numb!

Wishing you all the best x

Judylynne profile image
Judylynne in reply to Lupdaloop

It's crazy isn't it? Thank you for your support. I use my heating pad on my hands and feet. I had part if one toe removed due to dead tissue. My feet are so sensitive it's crazy. I feel like I'm walking on pebbles or you Legos.

KathinAyrshire profile image
KathinAyrshire

Hi Judylynne

Yes to all, me too! My toes are normally purple and the entire palms of my hands too and always cold. The last time my feet saw the light of day was in Spring last year on holiday in very warm climes and then I tried not to show them off as the fungal nail infection in both big toes is horrible. I really am not sure if the nail infection is Lupus related, bearing in mind mere mortals are expected to buy the treatment from the TV advert, I have always assumed it's something anyone can have, particularly in my case virtually living in wellies!

One thing I have found with Raynauds and cold hands is the reply when anyone comments on how cold they are when shaking hands is "Oh yes, but warm heart" normally stops further comments.

I wish you the best of luck with this, it is a problem that my GP and rheumy seem to gloss over, so for me it's carry on regardless!

Take care

Kath

Judylynne profile image
Judylynne in reply to KathinAyrshire

So true. Thank you. I felt I was all by myself on this.

ijeasike profile image
ijeasike

I have the same problem and my fingers were cracked and soar. I wear gloves around d house and also to sleep at night. I also wear plastic gloves to wash, cook and shower. Any minor touch on my fingers sends d pain in2 my brain. Mine used to blister a lot. My feet are cold and numb . Lupus comes in a whole package. I ve had iloprost, rheitoximab to help calm it down. Take care Love. Xx

Belee profile image
Belee

Hi, yes I too have raynauds and my rheumy said it was part of lupus. She started me on nifedipine but unfortunately I had to come off them as they lowered my blood pressure too much and made me dizzy. There are lots of other drugs used to help raynauds. I'd talk to your GP and rheumy again. Thankfully, with the help of my GP I'm managing my raynauds with other methods. I'm keeping as active as possible to keep my blood circulating. I wear 'NASA' socks under my normal socks and 'nasa' gloves which I find helpful. Have a look at raynauds.org.uk which has lots of helpful hints.

Hope your symptoms ease soon.

All the best. Xxx

Judylynne profile image
Judylynne in reply to Belee

Thanks for the website. I've never seen these socks before. I ordered a pair so hopefully they will help.

Cann profile image
Cann

I wear gloves even in summer and I have a fungal finger nail. I don't think it's the gloves or socks would do it. I knocked my nail originally and it never returned to normal - the faulty immune system, I suspect. I have tried all sorts from the doctor and herbs, too, but it does take a long time the doctor said.

Judylynne profile image
Judylynne in reply to Cann

Do you take a med or natural med for this? My dr didn't even want to see my feet

Cann profile image
Cann in reply to Judylynne

The doctor gave me two treatments, the first was a cream (sorry I can't remember the name) to rub in and massage all around the nail. That didn't work. He then gave me a paint (the same as curanail you can buy at the chemist for £20) to use and the nail completely disintegrated, now I virtually have no nail on my finger. He apologised for this, but could offer no more help because he said it is normally treated with internal medication, but he suspected my liver couldn't cope with it - I agreed with him. Someone else told me the same and said what is the point of good nails and a damaged liver.

I have homoeopathic silicea from a homoeopath, which helps to keep the inflammation down, but whether the nail will ever grow back normally, I don't know - just have to keep positive, but the trouble is I keep knocking it as it is vulnerable with no nail, but if I keep it covered it gets inflamed and infected, so I let the air get to it.

baba profile image
baba in reply to Judylynne

Make him/her look!

anbuma profile image
anbuma

I to wear gloves all summer-especially when holding anything as bag handles and dog leads cut into my swollen palms.in tescos yesterday had some handwarmers fro 50 p and foot warmers fro a £1.bought the handwarmers to try.no need to microwave them.just hold them in your hand in a pocket or mitten and they soon warm up.cant give a result yet.

Judylynne profile image
Judylynne in reply to anbuma

Thank you.

jeevan05 profile image
jeevan05

Yes I to be raynauds, but only suffer in the winter months, summertime im okay..on winter my feet and hands turn blue to a point where there totally numb. Almost like iv got Buckets on my feet..hope you get sorted soon..t.care

There are lots of lupies with Raynauds. There is also a Raynauds and scleroderma community that you might find useful to browse.

Theres lots said about keeping warm by turning up the heating or wearing particular clothing but eating regularly also seems to play a part. If your body has warming food its easier to ward off a cold attack. I said EASIER...........

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