Does anyone have Raynauds? I guess I can add to the list of my other syndromes, diseases etc. Can anyone give me some advice unfortunately I am having a cold winter which does not help. Thank you all for making me feel so welcome!
Hi fibro 49,
Sorry to hear that you have this. Yes, I have Raynaud's Phenomenon, there is also Raynaud's disease. I have had this reaction to cold exposure as far back into my childhood years that I can remember.
Besides the fingers, toes, hands, feet, it also affects the nose and ears. I wear 'cuddle duds' long johns, either 2 pair of socks or heavy close knit wool ones, good boots made in Canada. I have found they make the best boots, our Canadian friends know about cold, and how to stay warm!
There are battery operated gloves and socks available through sites who specialize in clothes for skiers and hunters. Our little drug store even carries many of these items, including gloves that can be microwaved.
I use ear muffs and the type of scarf that fits over the head and wraps, so I can cover my nose if need be. I prefer Isotoner gloves because they stretch and it's easy to still use your hands, though I have glove that you could probably wear in the arctic. I have gloves that I use in the summer to go to the grocery store to handle frozen foods. I keep at least one pair in the car at all times.
I have been given a vasodilator, the Rheumatologist told me I can just take as needed, but if your Dr suggests you take it regularly, he knows best! We have a new sub-group for Raynaud's just click on groups at the top of the page. Terri has great information there that goes into more detail than most of the things you find on the net. We would like to extend our hospitality and welcome you should you decide to join.
Please contact me anytime, should you have any questions, or would just like to talk.
Wishing you well,
BTW, before going to bed, I throw my top sheet and blanket in the dryer for about 5 or 10 minutes, as sometimes they feel a little damp and cold, so this does the trick and warms everything up!
I've had Raynauds for years, I take Adalat XL from sept-may every year to open my arteries. My advice, stay warm. Keep your hands and feet well bundled if you have to go out in the cold. Personally, I hibernate every winter. My feet used to turn white, then black. Now I/m more careful about exposing myself to the cold. I don/t think there/s anything else you can do. Good luck :)
What's the difference between Raynaud's Phenomenon and Raynaud's Disease? I'm very curious, because working for a Rheumatologist, I should know this !!!
I have "early Raynauds". It affects mostly my hands. I try to keep them warm and use a heated throw in the evenings (the worst time of day for me).
Renie, primary Raynauds is called Raynauds disease. Raynauds that is part of another disease (usually an auto-immune disease) is Raynauds Phenomenon.
Thanks sk for the tips and link. I live where our winters are cold and humid. I am still trying to work and that’s a day by day thing so going out in the cold is pretty rough. I work in a administrative office so we are required to wear business clothes which means dress shoes which you ladies know that is thin dress socks or nylons so my feet and hands are cold before I get to work and when I get there I have a small heater by my feet I run all day which does not get me warm enough. When I go home my feet are burning because of being at work and on my feet all day then they are purple by the time I get home. The dermatologist gave me some kind of cream that does not work. I am having a hard time going to work every day with the chronic fatigue/fibromyalgia, degenerative disc disease, periphal neuropathy and now this. How do you all work with all these disorders? I have missed two days this week and have a boss that doesn’t get it. Yes the co made me document all my disabilities on file. I have even been passed over for a raise because I was told “legally I can’t do this” but due to you being out sick that’s why I can’t receive an increase… I live in an at will state so they can fire you for anything. I just don’t know how I can keep this up I have more work than the rest in our office. Does anyone deal with these issues regarding their health and work? Not sure what to do, thanks for listening.
Raynaud's disease is considered a vascular disease, while both really are, once you have an existing autoimmune disease of any kind, then you are classified as the Phenomenon. Just figures I would be considered as a Phenomenon! LOL, Renie!
My mom had Raynauds and I really felt bad for her. Her fingers would turn blue and then completely white. I would have to fix a bowl of warm water for her to soak her hands in. My mom was handicapped and was in a wheel chair. Any way as she got older she had to wear mittens to keep her hands warm. I have a lot of pain in my hands in the winter time. I wear the gloves for arthritis. I hope I don't get Raynauds. Thats about all I know about it. What are your symptoms? Sue
Hi Fibro 49. My best friend has Raynauds. We are in our mid fifty's and I remember her having poor circulation in her hands and feet when we were kids. We were talking the other day about how our symptoms are similar. She has difficult mornings and dreads being cold. I do too. She is challenged with memory issues. I am too. I'm sure there are more...I can't think.
Since a bad car accident and back surgery in 2005 I have poor circulation in my right leg. My right foot is always cold, especially when I go to bed. Like SK, I wear tightly woven wool socks all winter including when I go to bed. If the feet get hot at night I just kick the socks off.
Can you wear some warm socks and boots until you get to your desk in the morning? Also, do you have a nice warm bathroom/bedroom area where you shower and dress? That seems to be real important to my friend. She has a heater in her bathroom because if she gets cold after her bath she can't get warm again. (I do too). I got her some nice warm slippers for Christmas and she wears them mornings and evenings now. The fashionista wouldn't wear anything like them previously because they're not "pretty", but they're warm and she like that and knows she needs the warmth now.
Sorry you have to deal with this, 49. I left my job in 2007 and I miss working so much. You have to make that call on your own. You know your body.
You take care.
Thanks red, a much better explanation!
Charlie, SK and fibro 49, my friend wears fingerless gloves that are made especially for raynauds. I don't know where she got them, but I found a website that sells similar ones. I'm sure there are many sellers, but here is one. Hers arent as long and mostly cover only her wrist and lower arm. She says they help.
I wear fingerless gloves as well. Then I don't have to take them off when I arrive at the store or wherever, and I stay warmer.
This looks like an even better web site for the gloves and socks too.
This is such a great find, that I posted it on the Lupus sub-group of Raynaud's telling them that you had found this site for us! Thank you very much from their 42 members!
If you do not mind my asking , what symptons did you have that led to your DR suspecting Raynauds?
I'm so happy! That is wonderful! Thanks SK.
Not being able to tolerate cold, the fingers, toes, ears, nose, either turn white with a cold exposure of can turn purple, blue, and look very badly bruised. My hands and feet have always been like blocks of ice, always!
I also posted this on the BF rare disease site for Raynaud's. There are about 7 members there I think. One day we will all be under one site, I hope!
My Raynaud was diagnosed as a kid, so may be primary, is mainly cold feet that can go white & blue after a cold shower longer than a minute (if so I finish with warm water on them). Got much worse with fibro. Now I’m thinking of tackling it in case it gets worse or causes further problems in my legs and feet.
Short summary of the threads here like above & this, plus some added web-info:
Prevention/Alleviating with clothing:
Always keep them warm: Gloves/mittens, praps fingerless (or combined, I can button the tips back on my mittens) - however silly it may feel (advocates us by makes the invisible visible). More socks. Since fibro I wear 3 pairs of organic cotton socks in hotter summer in sneakers, plus one pair of woolen socks over them rest of the year and all year at night, thicker blanket round feet than up top. Others: Similar. Socks you can microwave, battery heated socks for hunters…, electric blanket, blankets in dryer before sleep. For nose: bandanas, ears: ear muffs. Generally layering clothing, but loose, long johns. (I use my bike rain legs when I get cold, indoors as well, like mittens - e.g. CoV-airing in rooms with many people in winter…)
Alleviating with heat:
Heat pads, spelt cushion, I often prefer hot water bottle.
Improving/training the blood vessels with physio:
Heat or alternate: with alternately hot & cold water or pads or baths in canola seeds or spelt etc…
Alleviating or improving with supps:
Herbs/anti-infl. (‘warming’) spices (too GI-tough for me), incl. ginger, curcumin/turmeric & capsaicin, but menthol, camphor applied locally may be OK a bit, despite my sensitive skin. For others: internally or locally.
L-Arginine: For blood pressure too - study 2019: only if secondary Raynaud’s - (Wikipedia)
Grape seel oil, Inositol, Ginkgo, Ginseng, Mg oil, vit. B, C, D, E, Se, Zn.
Alleviating with meds::
Vasodilator (vessel widening) & blood circulation meds, e.g. Niphedipine, Adalat XL.
Primary Raynaud is circulatory, secondary can be autoimmune.
For some it’s connected to low blood pressure. (However my blood pressure has always been on the higher side. But I have weird orange spots on my feet and the bottom of my legs, probably iron deposits, and beginning varicose veins.)
I have raynaud’s as well and also have had it since I was a child but never diagnosed until later in life. I have the problem I need the warmth but not anything heavy on my body because of fibro as it causes the pain to increase. At night I use bedsocks even when I put the electric mattrice cover on, in the morning my feet are still like blocks of ice. If I do not put bedsocks on I then suffer with chilblains with the heat. As I cannot tolerate medication there is nothing I can do I alleviate the condition. I have even been in hospital and had Iloprost treatment which is horrendous. Sometimes when I walk it feels like I am walking on a bed of nails until the circulation comes back. My hands are effected with Raynaud’s, arthritis and fibro.
Hi rosebud! Oh dear, bed of nails sounds especially bad!
Did yours get worse from fibro, like mine?
But - if you like me don’t tolerate meds - you haven’t tried any supps for it, like those above?
I’m not sure: You’d get chillblains without bed socks, as your feet are still too cold from the mattress cover heat alone?
I for myself can’t use synthetic “bed socks” (makes me feel yucky all over) and they’re not warm enough. So as I said I need my 3 pairs of cotton socks and 1 pair of woolen ones on every night, unless it’s a very hot summer night. (Pre-fibro 1-2 pairs of cotton socks when it’s hot, 2-3 pairs the rest of the year.) Plus I need to wrap a thick organic Continental quilt around my feet. And if that’s not enough a hot water bottle which I alternate between feet and knees (hands if nec.), as that’s the best kind of heat for me; spelt cushions etc. don’t hold the heat long enough, and electric pads, covers etc. are not warm enough, some too synthetic, but I’ve seen some from 100% cotton. A normal mattress cover’d be too big, could I put one just under my foot area?