Hi Brett, and welcome!
Yeah I have both, "primary" "Raynauld disease", now mainly in my feet. In my teens in my hands. Now - after fibro and then the CoV jabs - 5 pairs of socks almost every day and all night. I don't think I've ever been formally diagnosed by any tests, the docs just confirmed/accepted my self-diagnosis.
But aside from increasing, which may be from moving less, I can't say my Raynauld's has anything in common with my fibro.
Edit: See below - I can now.
So they didn't recognize your Raynauld and you don't have fibro, or how d'you mean that?
I'm wondering how someone could mistake purple fingers and toes for fibro, I don't get where confusion could come in.
Fibro has to be much more widespread pain than in fingers and toes, plus many additional symptoms....
Purple fingers and toes to me also seem a fairly sure sign, the diagnostic procedure I'd think is to exclude something else or distinguish between primary Raynauld disease or if it's caused by something else secondary Raynauld's phenomenon. (The terms are used a bit interchangeably tho, despite what wikipedia says, e.g. primary and secondary Raynauld's phenomenon.)
What do you do about it, then?
Me passively socks and warm bedclothes, actively cold or alternate showering, as much movement as my energy allows. And supps for blood flow: B3, B12 I take a lot, arginine and B6 might help too, evidence of all is slight.
Lips white to blue:
Thanks to your post it just came clearer to me that my often white to blue lips will be the Raynauld too. Looked it up, it's rare, but happens. My cardio did refer to "circulation" and my feet, but I never made the connection to see my lips as part of "Raynauld".
Also wikipedia just put me on the track that Raynauld can be triggered by cold and also stress. I didn't realize stress, hadn't noticed that with my feet cos they seem only to react to the cold, so on really hot days I can take the 2 woolen pairs off and when it's colder I'll need a hot water bottle. But my wife can "read my lips": When they're white(r)/blue(r), I'm overdoing it, so that'd be "stress", meaning physical as well as mental strain of 20 minutes or so. Yeah, of course they go blue when I come out of the cold shower, so the cold is a trigger for them too. And they are never red, haven't been for years - maybe since fibro? The paleness is baseline 40-50%, and regularly (every day) goes up to "70-100%". Maybe I should call white 80% and blue 100%...?
My feet may occasionally hurt, but not really. Not even if I've been in a cold shower and pull up my toes for some reason, reducing circulation and making the toes and more go blue inside of 30 seconds.
Via my lips we're actually coming full circle to the connection to fibro: "Stress", i.e. strain, which is increasing, since almost all activities of even a few minutes have become more and more of a strain.
Now someone fibro recently asked if it's the facial fascia making my lips go white and blue, an interesting idea.
A review article from 2016 which wikipedia links to says about the mechanism:
In persons with Raynaud’s phenomenon, the already-heightened sympathetic vasoconstriction in these specialized areas is further amplified in intensity and scope: exposure to cold can evoke intense sympathetic-mediated vasoconstriction throughout this vascular network, including upstream arteries, which undergo vasospasm, arteriovenous anastomoses, and arterioles providing nutritional support to the skin.
So it's the fight or flight sympathetic "stress" mode that is increased.
Secondary Raynauld worse for skin:
This is about both forms, but if associated with scleroderma, meaning it's secondary Raynauld's phenomenon, the nutritional support of the skin is much worse than in the primary form, leading to "endothelial dysfunction". So, Brett, I'm waging that's what you have, seeing as tho your skin is dying off. (Mine isn't, just I have regular small skin issues on my right foot, so have to keep on my toes
with tea tree oil.) So as the review says people with secondary Raynauld are a lot worse off.
The cold in Raynauld's and in fibro - this is for Raynauld, but a lot sounds similar to fibro, I'd think:
The avoidance of cold remains the most effective therapy for any cause of Raynaud’s phenomenon and is a key component in the successful management of the disorder in all patients. Cold avoidance should not be considered to be a passive approach. Systemic and local warming are highly effective at increasing blood flow in the skin. Systemic warming is best accomplished by keeping the whole body warm with layered clothing, gloves, and head covering; avoiding rapidly shifting temperatures, such as rushing into an air-conditioned area; and avoiding cold and breezy conditions. Local hand warming with gloves and rubbing the hands in warm water or with chemical warmers can help prevent an attack or speed recovery. A typical attack lasts 15 to 20 minutes after rewarming.
This confirms my hot water bottle, also the chemical warmers (iron filings) I have with me just in case, usually gloves, always layered clothing.
Interesting though:
breezy conditions and attack lasting 15 to
20 minutes after rewarming. Longer than 15 minutes in a breeze, draught, AC (e.g. car) or similar cause a whole body pain worse than in cold for that time. And my recovery takes 3 to 10 hours. So I'm wondering if that is a similar or a completely different fibro mechanism rather than Raynauld.
I'd realized this before, but not as deeply and clearly... - so thanks for the input!
