Hi all! Does anyone get acracyanosis, a blueish purple discoloration of whole hand/foot (like my pic) with their Raynaud's and Lupus? I think I get both! It's much worse in the cold obviously, in my hands, feet and knees and makes them hurt and feel numb. See my pic!
I read a lot about Raynaud's and Lupus but less about this so was just wondering if anyone else experiences this as part of their Lupus too? I was finally diagnosed after a very long few years!! Thanks people.
Heya there, I don't honestly know. Acrocyanosis is generally a persistence of blue/purple discolouration, worsened by cold but I believe it's always present.
I generally label everything to do with peripheral vasculature, wrongly or rightly, as my raynauds phenomenon. I also feel that my extremities realize a weather change before I do.
They do seem like eerily similar conditions, albeit the raynaud's is very spasmodic and over a few minutes or hours improves and the colours change. Whereas the acrocyanosis persists like a softer but chronic partial vasospasm.
Again I am no doctor, at least not on this forum haha. I would say my baseline colour is usually airing on the purplish side after all these years. I also find that the raynaud's can eventually go beyond the fingers and hand, as mine affects from the elbow down for some reason, my knees, ankles, feet's nose and ears. If it is raynaud's phenomenon rather than raynaud's disease it seems to have much more varying and at times worse symptoms than raynaud's alone.
Again, avoidance of triggers is the best possible solution. It sounds daft but I literally avoid an awful lot, high intense exercise, cold, hot, sun, rain, wind, stress, I keep them covered, often in gloves and extremely temperate. The worse thing for raynaud's is to get cold and spasm, the pain of the spasm and the temporary ischaemia can be excruciating. So I always go for a warm temperate state.
Hope you get some answers on this lovely forum
Sorry I can't be of any more help.
Lottie
Lottie thank you so much for your detailed reply!! That's interesting because this colour is definitely not always there. At baseline I can have some discoloration at times and what my doctor saw on my hands and said was a "lacy pattern" which I've had for a while and honestly feel like it might be connected!
I think my doctor might have thought it was Raynaud's actually. Shall have to ask him! Like I also get it in other parts and as it's got worse I've got it in more places over the years.
For me it's triggered so quickly and easily in terms of cold. Literally only need to be in a drafty environment for about 30 seconds and it starts 😂 so I very much feel that extremities feeling the change before I do! And then eventually I'm freezing!! I definitely struggle to warm up again but when I do the colour improves massively.
Thanks again!
Rosy
The lacy pattern is generally described as 'livedo reticularis' in medical terms I believe.
Do they ever go quite distinct colour changes with cut off areas at all? Again raynaud's has 0-100 and everything in between, so it does sound like a bit of raynaud's, so wrap up warm.
Stay toastie with a hot water bottle, I even take it to work, always wear gloves even on a warm day, and as you say avoid the elements, for they know.
And yeah see what your doc says if your struggling to cope with it
Keep safe
Lottie
The fingers can definitely go distinctly white! However the purple and blue colour is definitely more over my hand area.
I'm the same!! Hot water bottle with me as often as possible! I find I'm more sensitive to the cold in general! Thanks Lou
Lottie Lou has given you great feedback!
My version of this is a big prob - started in childhood with my infant onset lupus. With age, my feet, ankles have proven to be most severely affected, but my hands are affected too. And I have had Livedo Reticularis & acrocyanosis (without the sweating aka hyperhidrosis) for many years pretty much all over my lower torso mainly, but most severely in my legs & feet
Am now 68 with severe Raynaud’s ischemia reperfusion injury in my feet - even though I’ve done my best to limit damage via self help lifestyle techniques + rheumatology has been medicating my raynauds since 2010. Am under a rheumatology specialist Raynaud’s nurse for scleroderma protocol Raynaud’s treatment now.
For what it’s worth, recently I checked the NICE guidance on Raynaud’s - just to see what the NHS is officially telling medics on this subject. I think this NICE info is clear, concise & digestible & does mention Raynaud’s secondary to lupus.
Here on HealthUnlocked, the SRUK (Scleroderma & Raynaud’s U.K.) community is also very helpful in all this.
Here are links to NICE’s pages on Raynaud’s & acrocyanosis:
cks.nice.org.uk/topics/rayn...
evidence.nhs.uk/document?id...
💞💞💞💞 Coco
Thank you so much for directing me to those helpful links as well! Interesting it started when you were a child! I remember having episodes as an older teen but then it's certainly progressed!
Hope you're getting all the care and help you need now! Sorry to hear your Raynaud's is so severe!
V Glad that helps! Yes, am probably getting about as much support a 🦓 can in these strange times…hope you are too…glad you found this wonderful forum😍
Hi Rosyovary. Sorry to hear your Raynaurds is causing pain and problems. As a fellow sufferer my hands always go blue to purple even indoors. Any temperature below 15 degrees C means I have to wear gloves. Indoors and out. I have invested in some Snowdeer rechargeable battery silk liner gloves from Amazon. They are pricey st £100.00 but they help my quality of life- with these on and a pair of normal gloves over the top (to keep the heat locked in) I can go for a walk. Without them the pain would just be too much. Indoors I wear fingerless gloves around the home. The ones I use are Turtle Doves. Recycled cashmere as they come in lots of different colours to coordinate with what you are wearing. Although they don't have any fingers they really do help with the circulation. I have been prescribed Sildenafil three times a day to help the blood supply to my fingers.I hope you find the above useful. Remember to always warm them up slowly as trying to do so quickly can cause more pain.
Good luck and keep smiling! Together we will not let this define us.🙂🤞🌻
Wow I love the sound of those gloves! I've got to invest in a pair! I'll ask about meds at my next appointment just incase!
Yes if I sort of run my hand under a hot tap the pain is AWFUL!! Which is what makes me think there's definitely a Raynaud's element with the acracyanosis as acracyanosis isn't painful apparently!
All the best to you!
Hi rosy 🤗I'll second PositiveT on the fingerless gloves!! I found some on Amazon..cashmere wool from a Scottish company called Graham..half the price of Turtle Doves although mine are black..which is perfect for me.
I did find out a bit of the science behind wearing fingerless gloves. Apparently it's coz the fingers are closer together without hindering dexterity. When the fingers are seperate they lose more heat. 🌈😽😽Xx
I use the small heat warmers, they last about 8 hours, once my hands get cold boy do they stay cold. These little hand warmers are my friend, my gloves love them.
thank you!! I'll look into that
Completely normal for me. I have lupus, Raynaud's and a multitude of other issues. Mine have been this way since I was little.
thank you so much!! that's interesting as I had these type of symptoms years ago but they have progressed and changed!
Hi rosyovary, I've had Raynaud's phenomenon since I was a teenager+still get the blue/purple discoloration(I'm now in my late 40s). I am on Nifedipine 10mgx2 daily and this does help though the discoloration can still occur. (What was more alarming was when my hands/feet turned completely white as there was no blood flow to the extremeties but the Nifedipine definitely helped with that!) I was diagnosed with SLE a few years after Raynaud's so I've always put the circulation problems down to the latter which in turn is a symptom of the SLE. You should ask about getting Nifedipine as it will greatly improve the sore+numb feelings. Good luck+take care!
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