Chilblains!!

[Shann07]

I have unbearably painful chilblains on my toes caused by severe raynauds. I cannot take the pain of these any longer Im spaced out on painkillers! Ive read that soaking my feet in vinegar & warm water should help which Im trying but am getting no long relief? Has anyone any help and advice for me? Pain is constant & I can hardly walk. Rheummy has seen them & increased steroids. Due to start fluoxetine next week for raynauds if things dont improve 😞

[Paul_Howard Partner LUPUS UK]

Hi Lupielass,

If you haven't already, you might want to check out the Raynaud's & Scleroderma Association for tips on coping with Raynaud's and chilblains - raynauds.org.uk/raynauds/co...

They also have their own HealthUnlocked community which you may find helpful - healthunlocked.com/raynauds-uk

[Shann07 in reply to Paul_Howard]

Thank you Paul. I will check in there 😊

[baba]

Have you tried nifedephine?

[Shann07 in reply to baba]

Yes! Had an awful reaction to this drug. Next plan of action is fluoxetine its actually an anti-depressant used for raynauds, i wonder if its effective? Sitting at the mo with feet in warm water & vinegar then applying sudo cream read this helps! Oh the pain arghhhh 😣

[Barnclown in reply to Shann07]

V much feeling for you. Good question. Me too: the vasodilator nifedipine made almost all my typical symptoms a million times worse....& it took me years of treatment to damp them down again.

Some ?s:

Have your doctors given any explanation for why you reacted so badly to the vasodilator nifedipine?

If yes, have they discussed the likelihood that you might react similarly to other forms of vasodilation?

Is there any chance your raynauds is simultaneous with erythromelalgia?

Have you tried low dose amitriptyline?

Have you used betnovate cream on the chilblains? (my v lupus experienced rheumatologist prescribes me the weaker strength for use on chilblains & vascular rashes)

My chilblains were horrific (weeping etc) for decades during the many years when my infant onset lupus diagnosis was lost. I used OTC antihistamine cream which helped me feel as if I was at least trying to control them...but they were still awful.. I experimented with lifestyle management, and eventually learned to stick to an antiinflammation diet & avoid ever being exposed to extremes in temperatures (cold & hot) & became manic about caring for my feet & hands generally. Which sort of stopped the chilblains weeping, but not the awful sore itchy chilblain bumpiness

My infant onset lupus diagnosis was recovered 5 years ago when I was in my late 50s. Since that point, I have been diagnosed with sjogrens, and childhood onset raynauds + also erythromelalgia (this simultaneous raynauds & erythromelalgia is probably why nifedipine was so vvvv bad in my case: vasodilators must be avoided in cases of erythromelalgia (the burning disease)).

Now I'm still lifestyle managing everything & am on daily hydroxy+amitrip+myco+low dose pred and now my chilblains hardly develop...so am guessing my systemic treatment plan is actually keeping them away?. But: I still lifestyle manage agogo: avoiding extremes in temp and am manic about caring for my feet & hands: change my socks 2x each day, moisturise intensively, keep all dry skin to a minimum + I've discovered that betnovate applied at the first hint of chilblains can keep them at bay

For what it's worth: My feeling is that anyone who may have even only a slight predisposition to simultaneous raynauds & erythromelalgia should discuss this Oxford rheumatology link with their doctors before trying fluoxetine:

rheumatology.oxfordjournals...

I'll be following this discussion, hoping to learn more & hoping you get some good tips

🍀🌻 coco

[Shann07 in reply to Barnclown]

Hi barnclown thank you so much for taking the time to reply. I had severe case of palpatations & heart rate went crazy on nifedipine ended up in hosp v scary experience. Thats why rheummy going to try fluxetine. Thanks for your many tips i will def try anything. Ive just purchased raynauds socks & gloves online not sure if these actually help but Im desperate! Really hope they dont linger on. Take care xx.

[Barnclown in reply to Shann07]

So sorry you're going through this, lupielass. My heart went crazy on nifedipine too. I had to stop it right away. Good luck with fluoxetine. I hope the socks & gloves help. XO

[misty14]

Hi lupie lass

Sorry to read your suffering so much with chilblains. Just want to say that I took Fluorexitene and it helped my Raynauds greatly. Also a few years ago now I had an Iloprost infusion in hospital , it's a strong vasodilator and it improved my circulation and chilblains. Something to ask your Rheumy about maybe?. Hope they improve soon. X

[Shann07 in reply to misty14]

Thankyou misty. Up from 6 am this morning bathing them, painkillers etc they really are unbearable. I do have bad raynauds but never chilblains on my feet before! Does is take long for fluxetine to kick in? Cant believe rheummy didnt offer the iv treatment before winter took hold 😞

[misty14 in reply to Shann07]

Hi lupie lass

I don't think it took long for Fluorexitene to kick in, such a long time ago I can't be sure. At least it will help your mood if it doesn't help your circulation!. Hope they improve soon. X

[Shann07 in reply to misty14]

Thanks misty. Im starting to wonder whether its chilblains/severe raynauds at all as the toes & sole of feet are on fire & pure red! The pain is sooo intense cant sleep/walk etc & im shaking with pain til next dose heavy painkillers. From what ive read online noone seems to report pain this bad? Im seeing rheummy tomorrow as urgent app, fingers crossed i get relief soon x.

[Natura]

What is chilbains? My left foot hurts bad time to time. Lavender epsom salt soak helps a lot.

[Natura in reply to Natura]

Just saw a picture. I have these from time to time on one or two toes. I try not to touch when i have them. They hurt. I would still try lavender epsom salt soaks.

[Shann07 in reply to Natura]

Thanks natura. I obviously have a very severe case of this as im shaking with pain? Being seen at hospital tomorrow bit worried now!

[Natura in reply to Shann07]

So sorry...hope they can help. If you are shaking with pain you should go to hospital right away.

[Hidden]

are you sure it's reynaud? there is a rarest form of lupus called "chilblain lupus" that causes extreme pain in digits. develops especialy in winter. 1st sign is itching, then bumps appear all over your toes and fingers, then it gets out of control. last about 1 month, first 2 weeks are like hell. i remember thinking about suicide multiple times, one being last week. what i do in addition to my medication (regular lupus pills usually don't work for chilblain) is to drink plenty of water to prevent embolism, massage my ankles and wrists few times/day (better my entire legs and arms) with oil+alcohol mixture (any oil and alcohol will do), stay warm, take warm showers to stimulate bloodflow, drink warm liquids (cold liquids will make you shiver and slowdown even more the already occluded bloodflow), smoke less, eat fresh gingers, curcumin, take vit D, C, E, calcium, selenium, omega 3, and just hang on. some MD's also recommend regular intake of 1 glass of alcohol as it opens up the veins to stimulate circulation. adopting a vegan diet could also work. hope we'll both get better soon!