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any suggestions

Pizzalover35 profile image
16 Replies

I suffer from Raynaud’s disease and my finger starting doing this I find it hard to sleep at night it feels like stinging sensation when I lay down and try to fall asleep

Anyone have any suggestions to reduce the pain

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Pizzalover35 profile image
Pizzalover35
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16 Replies
Sooty712 profile image
Sooty712

HiI also have Raynaud's really bad in my feet I get chilblains on multiple toes they swell and itch and become very inflamed and sore.

I would go see your GP if you haven't already they came prescribed a cream to hopefully help you.

It's such a difficult condition to manage as cold and stress effects it's alot and I am not keen to medicated it so have managed 8 years without medication and sudo cream has always been something else that I used to find helped.

Hope you get to see a doctor and get something to help.

All the very best.

OldTed60 profile image
OldTed60

That looks more like ulceration than just chilblain from what I can make out from you photo. Please go to GP asap or nurse out of hours and get proper wound care or at very least ask a pharmacist for how to treat. Are you on medication for your Raynaud’s? If so sounds like you need stronger eg Iloprost. If not it seems you really should be. Even better if you’re under rheumatology - ask them or a rheumatology nurse urgently. This severity suggests secondary Raynaud’s I would think?

pino99 profile image
pino99

That looks like necrotic tissue. You need urgent medical attention to improve circulation to your fingertips. I had exactly the same some years ago and nothing was done about it, so it progressed and I ended up having the top third of my finger amputated. Don’t let them fob you off and insist on seeing a rheumatologist urgently. Hope it gets sorted, I know it’s so painful.

Pizzalover35 profile image
Pizzalover35 in reply to pino99

I told told by a male nurse that i had Gang Greene in my finger

lindyanne profile image
lindyanne

Hi there

Poor you.. yes I agree with all the above comments it looks like an infected ulceration and I bet it throbs like mad! Have had several of those. Definitely time for intervention and see your doc for antibiotics and wound care, keep it covered yourself with a light dressing such as melolin with Mefix, also vasodilators to help the blood flow, sildenafil is widely used now and iloprost infusions which I am lucky enough to have every four months for five days. It’s the bone and soft tissue that needs the blood flow so I’d get that seen and sorted asap then you’ll know it’s on the way to being mended.

Take care and good luck

Pizzalover35 profile image
Pizzalover35 in reply to lindyanne

I’m supposed to have surgery on my fingers Tuesday by a vascular surgeon

hunkyd0ry profile image
hunkyd0ry in reply to Pizzalover35

Double-check that before they are doing anything invasive!I am under specialist care at the Royal Free in London and they avoid anything invasive at all cost! You quite obviously have issues with the blood circulation in your fingers - that also means that the healing process after surgical intervention will be prolonged, more difficult, and you can potentially get an infection which could end up much worse!

I don't know what they're trying to do, but it makes me feel queezy to think they will cut into this finger and create an open wound there! 😳

lindyanne profile image
lindyanne in reply to hunkyd0ry

I agree, I’m looked after by the Royal Free too, and agree that vasodilators are a favoured option there, I did see a plastic surgeon at St George’s for awful ulcers and bone/tissue deterioration (acro osteolysis) but as soon as he knew I had scleroderma he sent me back to the royal free to make the decision, I didn’t have surgical intervention but had iloprost infusions and the rheumatologist (prof Denton) upped the dose of sildenafil,

I really hope you can get some good advice and get it under control it’s really tough living with such painful lesions

All the best

Pizzalover35 profile image
Pizzalover35 in reply to lindyanne

can you get that over the counter

hunkyd0ry profile image
hunkyd0ry in reply to Pizzalover35

Sildenafil yes, at least in UK you can. Although obviously much more expensive if you get it over the counter (there's only 4 pills in one packet, which doesn't even cover my current daily intake), than if you get a prescription (I get a whole shopping bag for for the prescription fee of under £10).

Iloprost is an infusion which you get administered over several days at hospital. I usually go in for 5 days as an outpatient and would be there from 8-4pm roughly each day. They slowly up the dose over the day depending how well you tolerate it, and keep checking on your blood pressure and oxygen levels regularly. During administration you can feel a bit crappy (nausea, headaches, sleepiness or restlessness is some of the things I experienced), but those side effects diminish as soon as they take you off. The good thing about Iloprost is that it has a long term effect of about 3-6 months.

trunchalobesity profile image
trunchalobesity

You need an urgent medical intervention.

It looks ischemic, now necrotic.

It could become gangrene. Please ask for an emergency GP appointment or go to minor injuries urging.

I had similar during covid. My finger was saved I now take Sildenafil 3 times a day and have flolan infusions twice a year.

Act now

Midori profile image
Midori

I think that lesion on your finger needs a doctor to look at it,

Cheers, Midori

Pizzalover35 profile image
Pizzalover35 in reply to Midori

I had a doctor look at it and they did nothing for it I take nifedipine for it should I be taking something different

hunkyd0ry profile image
hunkyd0ry

Ohhh.... I feel you. Looks like a bad one too!Are you under specialist care?

So if the only diagnosis you have is raynauds then push to be seen by a rheumatologist and push them to get you on to vasodilator immediately!

This is likely more than raynauds!

I get those digital ulcers too and they are mean and painful and normal painkillers don't help. Feels like having your hand in an open flame! 😖

I get them too as part of my secondary raynauds with underlying scleroderma.

I'm on Sildenafil and Bosentan, with the occasional referral for Iloprost infusions.

I had an episode last summer that was terribly painful and didn't let me sleep. I received a mix of codeine, gabapentin and Paracetamol that made me pretty dopey but finally allowed me some rest.

But you need this urgently looked into and get properly diagnosed and put on the right medication!

Every severe episode will cause more scar tissue and might make things worse in the future, so you really want to avoid getting to this painful stage!

Good luck

Pizzalover35 profile image
Pizzalover35 in reply to hunkyd0ry

@hunkyd0ry honestly my fingers have gotten so bad that I’m literally waking up 10 times a night after taking 50mg of treziodone and 2 20 mg Melatonin gummies and most nights I still can’t get a full nights sleep

hunkyd0ry profile image
hunkyd0ry in reply to Pizzalover35

Those are sleeping aids with an unguaranteed success rate!

Of course they don't help while your digits are literally rotting away and you have associated nerve pain!?! 😳

Please do yourself a favor and get yourself checked out properly by specialists (rheumatologist) and get onto medication that opens your blood vessels in order to try and prevent such a severity of symptoms! Every time you have digital ulcers (especially of such severity) your body will create more scar tissue in your finger tips, which in turn makes future incidents even more likely!

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