Raynaud's Syndrome?

[JT_Marlin]

Now that the cold is upon us I have noticed my fingers getting white and numb the likes of which I havent ever experienced before - takes about 15-20min for color and feeling to return once out of the cold. This Raynaud's syndrome turns out for 90% of people is harmless and for the other 10% can be indicative of something worse.

Curious if other MPNer's out there experience this?

[Tico]

I dread every winter as I frequently suffer with this. Sometimes the fingers turn white,sometimes blue and can be very painful. I think its more prevalent in people with Mpn's but like a lot of other symptoms some Haematologists refuse to connect them. If you look at my profile you will see a post with a picture I posted some time ago on the same subject. Tina.🤗

[Mandy-moo74]

Hi JT_MarlinYes I also get this when it starts to turn cold I dread it. I have to wear mittens as gloves just don’t offer me any protection when the cold hits. My fingers turn white sometimes even a dark purple colour and are numb but painful at the same time. Never had it before my diagnosis so I definitely think there is a link there too.

Mandy moo

[ClaireF1]

Yep! I am triple negative ET, aspirin only (diagnosed 21 years ago). I’ve had signs of Erythromelalgia in the last five years but then more recently the classic symptoms of Raynauds (fingers and toes turning white and numb then incredibly painful the feeling returns) have started appearing in the last three years (I am 38). My Haematologist also says that Raynauds is not related but I can’t help but think it must be! I’ve had further investigation with a Rheumatology consultant to rule out any underlying cause and thankfully nothing found - I’ve been prescribed calcium blockers to try throughout the winter this year so going to see how that goes! Otherwise thick mittens/gloves, boot slippers for around the house and bamboo or silver socks are helpful. If you google raynauds association there is a market place with other helpful things! Hope the winter season isn’t too bad for you. Claire

[hunter5582 in reply to ClaireF1]

Sigh! It is related, which is documented in the literature. See links above.

[hunter5582]

Reynaud's is one the known MPN symptoms. It is reported in the literature.hindawi.com/journals/crim/2...

fpnotebook.com/rheum/CV/Ryn...

You can also get something similar due to the induced iron deficiency from treatment for PV. While I have never experienced full blown Reynaud's Syndrome, once I became so iron deficient I became far less cold-tolerant. Particularly noticeable in hands and feet. It is quite bothersome as I tend to be in the outdoors quite a lot in late Autumn and Winter, I am hoping this will resolve when my iron stores are closer to normal.

Hope you find resolution for the symptom.

[Tico in reply to hunter5582]

Thank you for the link Hunter, I will print it off and send a copy to my Haematologist to enlighten them! Tina.🤗

[souplover in reply to hunter5582]

Interesting! I first got Raynaud's decades before I got PV. I'm wondering, maybe it's not cause and effect. I'm wondering, maybe there's something that predisposes one to get both conditions but the PV doesn't cause the Raynaud's?