Chillblains

[GerryPL]

I have SLL and recently have had a few occurrences of Chillblains, my son is a Consultant Haematologist and tells me haematological malignancy is a common link and this paper links it to SLL, bmcdermatol.biomedcentral.c.... I can cope with this keeping hands warm etc but just wondered if anyone else has this experience and if they have had any advice for treatment.

[JigFettler Volunteer]

Best treatment for chilblains is prevention! 😉

Jig

[neurodervish]

I've heard of chilblains, but had to look it up. Sorry, the article from your son was packed with 'medical-ese' so I searched for something a bit easier to understand.

"Chilblains are caused by cold weather on small blood vessels. Tiny blood vessels constrict when skin is exposed to cold temperatures to prevent heat loss. However, a physiologic reflex opposes this signal and dilates these blood vessels to improve circulation. Further rewarming may result in blood escaping into tissue.

Several risk factors increase an individual’s risk of developing chilblains, which include tobacco use, inadequate nutrition, low body mass index (BMI), prolonged cold exposure, and autoimmune disorders (e.g., lupus erythematosus), and bone marrow disorders (e.g., chronic myelomonocytic leukemia). Chilblains may also be familial and run in families, meaning there may be a genetic component." osmosis.org/answers/chilblains

It sounds really terrible and I hope you're on the mend. Your "few occurrences" suggest you're at increased risk, so hopefully your prevention plan will serve you best. As others have shared here, CLL is highly heterogeneous, so we all have different presentations. I've had cold hands and feet my whole life, along with very low blood pressure. I counter this by getting up and moving for 10 minutes every hour on the hour. It really helps increase my circulation.

PS - If you lock your post, you may receive more responses.

[GerryPL in reply to neurodervish]

Thanks for your reply. Even in my stupidity I realised there is a potential cause and effect from cold extremities and chillblanes! But never having had them before CLL/SLL and not being able to find any reliable research just wondered if my illness could be contributing and others had experienced something similar. Thanks again for taking the trouble to respond.

[AussieNeil Partner Administrator]

It's important to appreciate that case studies reflect unusual, not typical occurrences. As the referenced case study noted, "Cutaneous manifestations of small lymphocytic lymphoma are infrequent and the literature regarding them sparse."

While my CLL/SLL began as SLL, I've only had chillblains once (on the top of my ears) and that was as a child. Wearing a cap on a particularly cold winter day would have prevented it.

Neil

[GerryPL in reply to AussieNeil]

As always thanks for your helpful response.

[neurodervish]

PPS - I created a graphic for locking posts. I use a laptop/desktop, so the layout is tailored for that, but if someone wants to share a smartphone layout, I'd be happy to create a sharable graphic for that as well.

How to lock your post

[AussieNeil Partner Administrator in reply to neurodervish]

The graphic for step 1 on a mobile device only differs in that the 'More v' option is under 'Reply'; it's the same for step2.

[neurodervish in reply to AussieNeil]

Thanks Neil. If you want to include a screenshot (or email it), I can adjust this graphic, or create an additional version for mobile devices. I usually stack the pics vertically for smartphones.

[AussieNeil Partner Administrator in reply to neurodervish]

Perhaps someone else can send you a step 1 screenshot from a mobile device; moderators have a different menu. If so could you please add them in replies to this post: healthunlocked.com/cllsuppo... It's present on our community home page.

Thanks!

[Schubert1870]

Hi GerryPl,

A few years ago during the winter months, my toes were black and blue, which was rather alarming, and had a biopsy to see what the results were. It turned out to be chilblains. I still experience it in the winter months, but at least I know it will go away as the weather is warmer. I’ve tried soaking them in warm to hot water with epsom salts for temporary relief and wear warm socks.

[GerryPL in reply to Schubert1870]

Thanks for your reply. Yes my son also told me to get some electically warmed gloves. But never having had them before CLL/SLL and not being able to find any reliable research just wondered if my illness could be contributing and others had experienced something similar. Thanks again for taking the trouble to respond.

[Shooey]

Hi, I’ve suffered with chilblains for years and dreaded the really cold weather waiting for flare ups.

Last winter we had prolonged periods of heavy frosts in the east of the country, I did some research and found the solution, well it worked for me anyway!

I put my Ugg boots upside down on the radiator to warm for about an hour then put them on, no socks and wore them all day. Hey presto, no chilblains all winter. Well, it worked for me!

Shooey

[GerryPL in reply to Shooey]

Thanks, good advice.

[Vakraas]

I've suffered from bad chilblains on my toes for about 20 years; since roughly the time I was first diagnosed with CLL, though I stress that I'm not claiming causality - it could well be coincidence. No doctor, whether general practitioner or haematologist, has ever drawn a connection between my chilblains and my CLL.

I have two mitigations that help, though don't completely remove the chilblains in winter. Wearing goat hair socks over my ordinary socks helps keep my feet warm, and when I do have chilblains, soaking my feet in hot water before I go to bed helps avoid the terrible itchiness at night as my feet warm up.

[GerryPL in reply to Vakraas]

Yes they could just be a consequence of getting old (another name for which is falling to bits!) I'm working on some warmer socks and gloves and hoping they will help. Thanks for replying.

[Pearlpink]

hi Gerry. I’ve not had any fir a while, but used to get dreadful chilblains. I agree, prevention best thing. But weirdly, I used to find Boots chilblain cream miraculous! Gave instant relief.

I’m not sure if they still do it, but it was a cream containing menthol that just made your toes warm! Wonderful!

It was a colleague at work years ago who told me. I was in such pain, and she ran to shop and got me some, and insisted I used it straight away! She was right! It was bliss!

Good luck!

[GerryPL in reply to Pearlpink]

Thanks, yes they still do the cream and I will get some today!

[GerryPL in reply to GerryPL]

Sorry went to buy some today and no longer available

[Floxxy]

I find this very interesting. I have Raynaud's and chilblains and had taken Nifedipine. However I stopped this because of the side effect. I was diagnosed with CLL in 2018. I started FCR at the beginning of 2019 and amazingly didnt have any chilblains that year. I believe it was because of the Rituximab. I'm now on Venetoclax and Rituximab as a second line treatment and Im hoping that the Rituximab will work again this winter.

[GerryPL]

Thanks for your reply, very informative I too wondered if my illness could in some way be effecting my circulation and causing chilbrains. I finished O+V 18 months ago now wondering if this is a sign my CLL/ SLL is coming back.

[mia20]

Hi GerryPL I have always suffered with chilblains soon as the the first frost I know by my feet frost is coming my Mum was the same as kids we thought what a load of rubbish now I know different. Any warming type cream will help and yes Boots own is really good when you can get it. It always effects the same toes with me no matter what I do. Good luck keep warm X

[GerryPL in reply to mia20]

Looks like Boots have stopped making it but will look for something equivalent. Thanks for your kind reply.

[GerryPL]

Yes, I suspect that Chilblains are a consequence of poor circulation of some sort. Poor circulation is obviously caused by many factors. Whilst there do not seem to be any published studies regarding CLL/SLL and Chilblains my son, who is one of the leading Consultant Dermatologists in the UK is quite clear saying that "haematological malignancy is a common link". I am not saying there is any definite link between CLL and Chilblains but do think it worth fellow-sufferers being aware there just maybe.