Raynaud's Syndrome: Anyone want to talk about Raynaud’s?

Anyone want to talk about Raynaud's Syndrome? My daughter has a severe case of it. I would like to start a support group here on Connect to find others, share our stories, treatments and managing daily life.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I have it because a rare autoimmune disease damaged my arteries. Damaged arteries damaged my nerves. I now have Polyneuropathy and Raynaud’s.

The best advice I give to myself is, “do not touch the can of Reddi Whip!” The cold can hurts!

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I always think I have it because I grew up in Chicago and when I was very young (3 and 4, etc) we played out in the bitter cold (sometimes sub zero windchill) for hours with not the greatest gloves or boots. We had a huge sledding hill right across the street and my mom could see us from the window so she figured we were fine. It never occurred to her that our fingers and toes were past the point of no return. Sometimes I would come in crying because I has stayed out too long and my fingers and toes ached and burned. I'm sure there's more to it than that but I always wondered if it was a contributing factor? I do have 2 other auto immune disorders so it's not unusual to have a cluster of them. Crohn's and Lupus. The Raynauds sort of goes along with those I guess. When I'm wearing sandals and my toes are exposed to air conditioning, they literally turn blackish blue and become completely numb. My fingers turn white and lose all feeling. I'm just greatful to be living in a warm temperate climate these days!

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Profile picture for pamper @pamper

they were also gonna try me on Prozac, as it can help raynauds. and I also suffer from anxiety disorder which can make it worse. I take Buspar 4 that. fish oil supposed 2 help-take that as well. there's also Botox injections into the nerves that cause the constrictions some r doing. i've also found visualizations 2 b helpful. I picture my blood vessels as huge flowing rivers of nice hot blood, with the blood flowing like crazy. sounds la la land 2 some, but visualizations can actually help some. wouldn't hurt 2 try it. or some visualization that u think of instead of my "rivers of blood." good luck

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Does anyone know if Botox works?

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I have had Raynaud's for 40 years. Mostly very cold fingers and toes for the first 20 years that progressed to frequent total shutdown of the vessels turning my fingers deathly white or almost black until I could get them in warm/hot water. I am unable to use any type of bp medication so I keep hand warmers in my pockets most of the time. The chemical type take too long to warm up, and sometimes never get warm enough to be helpful. The rechargeable kind are very helpful. They sell them on Amazon. I am always searching for gloves that are helpful, but mittens work best for me. I'm also hoping to find something for my feet while hiking in the winter. The Little Hotties burn the bottoms of my feet, and the battery heated socks work well, but bag around my ankles. If anyone has found a brand they love please share. Thanks.

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I would love to join a support group for Raynaud's Syndrome. Please include me if you start one up. I have had raynauds for 30 years. And have been thru it all, its part of a bigger autoimmune disease called Crest syndrome. Thank God I have had wonderful rheumatologist over the years. I am on generic Viagra for many years, 3 times a day. I'm also on Losartan to all open up blood vessels in my hands and feet. My hands are worse. I get ulcers on my fingers mostly in winter a d if they get infected I have gotten osteomyelitis and almost had my fingers amputated. So I have alot of preventative measures that I have learned with experience. I also have a team of wonderful drs that respect my opinion and experience with this disease. I am also a nurse, and that helps. It's amazing how other people I have met get no pr poor information and help from their drs.

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Profile picture for csmirat @csmirat

I would love to join a support group for Raynaud's Syndrome. Please include me if you start one up. I have had raynauds for 30 years. And have been thru it all, its part of a bigger autoimmune disease called Crest syndrome. Thank God I have had wonderful rheumatologist over the years. I am on generic Viagra for many years, 3 times a day. I'm also on Losartan to all open up blood vessels in my hands and feet. My hands are worse. I get ulcers on my fingers mostly in winter a d if they get infected I have gotten osteomyelitis and almost had my fingers amputated. So I have alot of preventative measures that I have learned with experience. I also have a team of wonderful drs that respect my opinion and experience with this disease. I am also a nurse, and that helps. It's amazing how other people I have met get no pr poor information and help from their drs.

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Have you been to Raynauds.org ?

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Profile picture for andielars25 @andielars25

I have had Raynaud's for 40 years. Mostly very cold fingers and toes for the first 20 years that progressed to frequent total shutdown of the vessels turning my fingers deathly white or almost black until I could get them in warm/hot water. I am unable to use any type of bp medication so I keep hand warmers in my pockets most of the time. The chemical type take too long to warm up, and sometimes never get warm enough to be helpful. The rechargeable kind are very helpful. They sell them on Amazon. I am always searching for gloves that are helpful, but mittens work best for me. I'm also hoping to find something for my feet while hiking in the winter. The Little Hotties burn the bottoms of my feet, and the battery heated socks work well, but bag around my ankles. If anyone has found a brand they love please share. Thanks.

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Anyone know what type of moisturizer works best my in keeping g toes moist? Also does anyone think you can keep them too moist?

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I don’t know what I have yet to get a diagnosis bc I haven’t been to the doctor yet about this but I’ve noticed over the last couple of months that my toes are turning a purplish red color and I have a sore on one toe that just will not get well. I have a dr’s appointment this coming Thursday but just wondering if anyone out there has suffered with this issue and what have you found out

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Profile picture for dfutch5 @dfutch5

I don’t know what I have yet to get a diagnosis bc I haven’t been to the doctor yet about this but I’ve noticed over the last couple of months that my toes are turning a purplish red color and I have a sore on one toe that just will not get well. I have a dr’s appointment this coming Thursday but just wondering if anyone out there has suffered with this issue and what have you found out

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A sore on your foot can be a breeding ground for bacteria which can lead to serious infection. Best to get that checked out and medicated as per your podiatrist (or primary) diagnosis/decision. Consider how your feet are generally within socks and then a shoe. Perfect breeding ground for bacterial growth in that toe sore.

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Profile picture for sonnyforee10 @sonnyforee10

Anyone know what type of moisturizer works best my in keeping g toes moist? Also does anyone think you can keep them too moist?

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sonnyforee10:
I've dealt with whole body dryness all my life. I use a body wash (Dove brand is my favorite) for showering, towel dry completely, paying close attention to areas between and under toes. A nickel sized dab of a thick emollient (but not petroleum jelly) is massaged over entire foot, starting with heels and ankles, then under and over, and finally between and over toes. A tiny dab more is rubbed at front end and over each toe. Gentle massage is essential for me since I have three neuromas that I don't want to "activate." I make sure that ALL is as rubbed in as possible. NO little gobs of moisturizer between toes. Then I rub up toward ankle and continue up the leg, because it just feels good😊 and it finishes spreading out whatever emollient might still linger in my palm. I have a pair of non-binding socks right there beside me, ready to put on and then my comfortable pair of what I call "in-house shoes" (actually a pair of super comfy no-lace-up Skechers). Voila! My feet are ready to provide me "transportation" throughout the day. I NEVER go barefoot for a couple of reasons: (1) hurts like hell to walk on hard surfaces of tile or wood floors (2) I broke two toes while being barefoot and I don't want to ever experience that again.
You ask about "too moist": Not sure what you mean, but if you prefer to use a liquid cream, again make sure that it is well worked all over each foot, and that you don't leave any between toes. As I wrote elsewhere, you do not want to provide a moist environment in which bacteria can take residence and give you additional problems.

Another point: Yes, I've endured Raynaud's in both hands and feet for several decades now (as well as peripheral neuropathy, both which have intensified as I aged (now 76). I wear socks ALL the time, ALL year round, and yes, feet are covered with thick non-binding socks at bedtime. When I was placed on metoprolol succinate extended release about 25 years ago, the drug affected the Raynaud's, and while my wonderful, much-appreciated rheumatologist wanted the cardiologist to change the medication, no, that was the one to deal with my pressure and arryhthmia. (That specific medication can effectuate Raynaud's, and if you already have that disorder, the heart mediation can exacerbate the Raynaud's.) Solution: cut the dose from 100 mgs twice per day down to 50 mgs, thus reducing from 200 mgs to 100 mgs per day. That helped tremendously. However, the condition still exists, can get nasty at times with horribly "iced" fingers and toes (especially the fingers), gray to almost black color, and soles of feet become black, along with slightly less black toe nails and toes. Scary. Painful. Upsetting. I bought 6 pairs of stretchy gloves on Amazon (in different colors) that I wear as needed, even in warm weather. Hey, you gotta do whathagottado😁!

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