Raynauds/ blisters : Hi my hands and feet have been... - LUPUS UK

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Raynauds/ blisters

Chaz1226 profile image
16 Replies

Hi my hands and feet have been playing up a lot recently and I’ve noticed tiny pin prick dots on my fingers and toes only afew they feel like glass shards stuck in there, I’ve Also noticed that between my little toes they are moist and open sores they don’t hurt but they look raw, I bath/shower daily and dry properly so I’m wondering if this is due to the Raynauds I’m freaking out as usual because I’m petrified of loosing my fingers or toes / gangrene ect! Also I have really dry discoloured patches of skin peeling away aswell any advice how to prevent this would be much appreciated Thankyou!x

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Chaz1226
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16 Replies

I get the tiny glass shard pain with blisters inlaid - but I only have mild secondary Raynaud’s with severe Sjögren’s small fibre neuropathy- no ulcers is far but a few years of burning chilblains and now my fingertips are quite numb yet painful at same time 24/7.

My toes and soles go bright white when they touch warm water and also have lost sensation. None of my doctors have been able to explain the blisters or the pain except to confirm that this is connective tissue disease related. I do get glass shard pain with chilblains all the time but never the ulceration or tissue sclerosis.

I thought at the time it started that it was a form of eczema called Dyshidrotic eczema - which I used to suffer from a lot. But the GPs were adamant that this didn’t correspond and steroid cream etc didn’t help.

Chaz1226 profile image
Chaz1226 in reply to

Thankyou for your reply,

I can relate with the numb and painful feeling, it’s strange isn’t it because you’d think if your numb you shouldn’t feel pain but sadly that’s not how it works, how do you manage the pain?

Can you see anything where the glass shard pain is located ? I seem to have pin prick dots and I’m worried they might turn into ulcers.

On my feet it has similar symptoms to athletes foot and eczema but I’ve noticed the “abnormal” skin is where my circulation is really bad.

I shall ask my doctor to look at these things for me I have an appointment on the 9th for abnormal blood results X

in reply to Chaz1226

Selwin’s comment below is a good one. I have in the past found that pompholix eczema and fungal infections can overlap with Raynaud’s abs Erythromelalgia. So that athletes foot cream can be very effective treatment.

In fact years ago this was prescribed to me by a dermatologist when GP had tried all the usual methods on my feet - along with a course of antibiotics. It worked like magic.

It didn’t work on my fingertips this time but didn’t harm either as I got some off a GP again - determined to treat it as pompholyx. I also tried some steroid cream but this didn’t help either. Sometimes I think these various conditions overlap. But also I have pain going under all my distal nail beds with pink halos so I’m fairly sure, in my case, that it is some kind of small vessel Vasculitis. I always ask my rheumatolgist about this as it’s so sore and makes typing slow and typos frequent. But they just shrug and point to neuropathy.

Frosty1960 profile image
Frosty1960 in reply to Chaz1226

Good luck, I suffer this aswell and one doctor in local surgery as usually just glanced at them and said oh we have a clinic can get them burned off as a sufferer you could imagine how painfull it would be.

Selwin2000 profile image
Selwin2000

Hi Chaz1226

Bless you that does sound quite sore but I’m glad your not in any pain.

I’m by no means an expert on Lupus but that sounds to me like athletes foot. Do you have a pharmacy near by as I appreciate it’s the weekend now, they have private booths where the pharmacist will take a look and give you the best advice.

In the meantime obviously keep the area nice and clean and keep a towel just for you (just in case) give fresh air to the wound covering it up will make it sweat it needs fresh air.

Much love, hope you get sorted huni xxx

Chaz1226 profile image
Chaz1226 in reply to Selwin2000

Thankyou for your reply!

Il pop by the pharmacy and see what they say about it it looks horrible the moist area has dried now however its cracking/splitting, the skin seems very fine hopefully that’s all part of the healing.

It’s a bit of a vicious circle isn’t it as I need to keep my feet warm otherwise the Raynauds attacks however my feet do need to breathe, I’ve ditched the ugg boots in the house and just wearing socks at the moment Thankyou for your kind words!xx

Cann profile image
Cann

I get this, too. I use a drop of tea tree oil in 11 drops of base oil to gently apply at night. It clears eventually. Incidentally, I read yesterday that showering daily is not good for the skin - destroys the good bacteria that protect our skin surface. I am sure this is right. I wash certain places daily and shower only once or twice a week. There are chemicals in tap water that do the damage. Just thought you may like to know.

Chaz1226 profile image
Chaz1226 in reply to Cann

Thankyou for your reply and the information regarding the water, I find it so hard not to have a proper shower may I ask do you have a flannel wash the days you don’t shower ? Is there anything I can use for my hair as I find I’m having a really irritated scalp/dandruff and sore spots , how often do you wash your hair I think I’m washing it too often but I have dark hair so the skin flaking is pretty obvious I wash it every other day. Thankyou x

Cann profile image
Cann in reply to Chaz1226

I use a basin/bidet and flannel, yes, making sure I machine wash my flannel on a high temperature regularly.

As for the hair, when I was seriously ill and my immune system problem became near fatal due to conventional treatment and the drugs I shouldn't have been prescribed with penicillin allergy, I lost most of my hair.

It upset me so much I took the bull by the horns and now keep it shaved short wearing wigs or hats when necessary as I never want to feel out of control like I did when I started to lose my hair.

I wash once a week under tap in warm water after applying something which I am not sure I should put on here, but a naturopath advised me when I was very ill and it helped me.

At that time, I found, when it was falling out, I got sores, flaking skin and itchiness from every shampoo or soap I tried, which indicated to me that I shouldn't be using any of them.

I do understand your dilemma especially if you have long hair and I cannot advise you on that, but may be others can on here. I hope so.

Chaz1226 profile image
Chaz1226 in reply to Cann

Oh Cann I’m sure you look beautiful with and without your wigs, I’m happy to hear you found something to give you relief and helped you.

I’m with you on the shampoos ect my head is sore as we speak I have a lot of bumps and sores developing I’m going to try yet another one or just rinse it and keep it tied up until I get everything under control.

Thankyou so so much for your reply and how you manage xx

Cann profile image
Cann in reply to Chaz1226

You're welcome, Chaz1226. All the best.

shareasmile profile image
shareasmile

I've had the red raised spots on my fingers numerous times. Your description of the way they feel is quite accurate! For me, the pain will last a few days. Then they seem to shrivel into my skin and form a pit and feel a little callused. After a couple of weeks, my skin is usually back to normal. I've also had the peeling skin in between my toes, but never really thought about it being related to raynauds. It did not feel sore or itchy like athlete's foot and eventually it cleared up. I'm not sure how to prevent either one, but since I've started meds for UCTD, I haven't had much trouble.

Chaz1226 profile image
Chaz1226 in reply to shareasmile

That’s exactly what’s happening to me they leave a little dot/hole and go dry and new skin forms. I have noticed I have around 10 purple dots now on my big toe I’m really worrying about this along with one on a couple of fingers.

I’m happy yours have given you a break hopefully they won’t return! X

Selwin2000 profile image
Selwin2000

Hi Chaz did you manage to see the pharmacist? Was thinking of you. Hope you’re feeling much more comfortable lovely xx

Chaz1226 profile image
Chaz1226 in reply to Selwin2000

Thankyou so much for your reply and keeping me in your thoughts.

I didn’t get round to seeing the pharmacist however I have a nurse appointment on the 3rd and a doctors on the 9th so hopefully they can take a quick look, in saying all of that the sores have dried up between the toes , I tried the keeping them aired and it has helped a lot. I’m just really worried about these pin prick spots on my fingers and toes the toe ones are scaring me. I think I’m having a “flare” I have the butterfly rash up again on my face. I feel very down in the dumps.

How are you x

shareasmile profile image
shareasmile in reply to Chaz1226

Be sure to take pictures so that you can show them at your upcoming appointments! I'm sorry that you are feeling so low. I hope you get good help and relief soon.

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