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.

@gardeningjunkie

I didn't know the name of why my fingers and feet would get cold when the rest of my body was fine. As an adult I learned it was called Reynaud's. I had to wear warm gloves in the produce section of a grocery store just to pick up the chilled and wet veggies. My hands, once the blood drained out were painful and needed hot water or a microwaved cloth to warm up again. In winter I needed a heating pad kept by my feet in my bed as no amount of blankets could warm up my feet once cold.
I read that fish or krill oil could help.
In my early 70's my condition improved dramatically after I had been taking the fish oil or krill oil capsules for about 2 years.
I've also read that their are some of us born with it and for others it happens later in life and may be a symptom of other diseases. In my case I was born with it, so I don't know if fish or krill oil will help the second type of Reynaud's

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I'm 81 and have had that problem for 40+ years. Have 3 grown children. Daughter in early 40's has Reynaud's as my deceased wife did. I don't know any cure. I used to be Duck hunter in temps 5 degrees F to -10 degrees F. Took off gloves once and couldn't get them back on. Really shouldn't use hot water only warm water. Heating pad near my feet helped!

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@slkanowitz

Here are some ideas for understanding and treating Raynauds: Raynauds is associated with several autoimmune diseases. The color changes are a result of spasm in the arterioles (small arteries) of the hands, fingers, feet and teeth. The spasms reduce blood flow to the extremities and cause the color changes (blue, purple, blackish, dead white and sometimes red). The spasms are intermittent and may just look bad or be painful. They are triggered by cold and stress. It isn’t curable but can be prevented and treated to reduce the severity. Severe Raynauds can cause ulcers in the fingertips and toes, which can turn into gangrene especially in Scleroderma. Anything that reduces blood flow to the extremities should be avoided! Therefore, absolutely no smoking. Keep extremities as warm as possible. Use warm water even for washing fruits and vegetables. Wear gloves or mittens anytime you’re handling cold items or ice and always outside when weather cold. Wear warm socks even to bed. Use hand warmers and any other devices that can warm fingers and toes. Be careful if you have peripheral neuropathy and decreased sensation not to burn tissue.
Prescription medication that dilates arteries such as Nitroglycerin paste and calcium channel blockers like Amlodipine (Norvasc) can help a great deal. I have had Raynauds for years associated with systemic lupus and find amlodipine has been extremely helpful. It lowers BP, so that effect needs monitored, especially if your BP tends to be low. If not diagnosed yet, take pictures with your smart phone to show Dr since it’s intermittent.

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How many mg of Amlodipine do you take?

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I found a pair of socks called “heat holders” that made my husbands Reynaud’s in feet much better at night, so he can fall asleep.

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Good Morning, I have had raynauds for about 20 years. Only getting worse. Mornings are very bad. Fingers get numb at work and difficult to type. Magical hands I call it. My fingers turn anywhere from red, white, grey and purple. So annoying. Numbness and tingling in fingers and toes. I've tried the norvasc for so many years but have major systemic issues and my rheumy switched on my BP meds to procardia to help with the raynauds. It got better at first and then back to normal. cold and hot water is a no no. Warm is best. I use the instant heat pads at work and also use the fingerless gloves. It really never goes away.

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@proudindian

Thanks Sandi, I will. Best to you!

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Sandy, I just joined the group and am yet to find a medicine prescribed to anyone for relief or special gloves that actually keep the hands warm and comfortable when outside in the cold. My daughter has been battling with this for years & it’s s horrible feeling when you can’t help as a mother. I have bought her every pair of gloves on the market but she says the best she can do is with mittens that don’t separate her fingers. We would think the opposite. Have you had luck with anything other than keeping the core warm? She needs the house colder than my normal all the time but her fingers turn white and pain in hands the minute she is outside or in a really cold place. There has to be something for their hands and feet.

Thank you for your contributions.

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@wieczorkemaria

Good Morning, I have had raynauds for about 20 years. Only getting worse. Mornings are very bad. Fingers get numb at work and difficult to type. Magical hands I call it. My fingers turn anywhere from red, white, grey and purple. So annoying. Numbness and tingling in fingers and toes. I've tried the norvasc for so many years but have major systemic issues and my rheumy switched on my BP meds to procardia to help with the raynauds. It got better at first and then back to normal. cold and hot water is a no no. Warm is best. I use the instant heat pads at work and also use the fingerless gloves. It really never goes away.

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Weic,
Thank you for your input. What heat pads specifically and where can I buy them? Did you go to a cardiologist for Procardia who treated you for Raynaud's? Or has a rheumatologist helped you with possible remedies? My daughter has been struggling with freezing and burning in her hands for years with no relief. Are there no gloves made specially for Raynaud’s outside? I just can’t believe there is so little information on such a debilitating condition. Thank you for any guidance to meds, gloves, shoes, and special fabrics in sweaters or jackets or jumpsuits, etc. that make this tolerable. NMC

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@nmc7

Sandy, I just joined the group and am yet to find a medicine prescribed to anyone for relief or special gloves that actually keep the hands warm and comfortable when outside in the cold. My daughter has been battling with this for years & it’s s horrible feeling when you can’t help as a mother. I have bought her every pair of gloves on the market but she says the best she can do is with mittens that don’t separate her fingers. We would think the opposite. Have you had luck with anything other than keeping the core warm? She needs the house colder than my normal all the time but her fingers turn white and pain in hands the minute she is outside or in a really cold place. There has to be something for their hands and feet.

Thank you for your contributions.

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Hi, nmc7: I buy Grabber brand hand warmers by the 10-pack every winter. I get them on Amazon. Gloves don't keep my hands warm, but I use the hand warmers in my jacket pockets and can put my hands in my pockets for an instant warm-up. Hope that's some help.

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Goofy but fast and helpful:
I warm my fingers up using the kitchen toaster. It gets really hot, really fast so you do need to be a little careful.
I use my hair dryer on my toes- highest heat setting, same as toaster.

Good luck to us all...

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@nmc7

Weic,
Thank you for your input. What heat pads specifically and where can I buy them? Did you go to a cardiologist for Procardia who treated you for Raynaud's? Or has a rheumatologist helped you with possible remedies? My daughter has been struggling with freezing and burning in her hands for years with no relief. Are there no gloves made specially for Raynaud’s outside? I just can’t believe there is so little information on such a debilitating condition. Thank you for any guidance to meds, gloves, shoes, and special fabrics in sweaters or jackets or jumpsuits, etc. that make this tolerable. NMC

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I have just last week decided I may have Raynauds so I don't have much I can share but I have a friend I know has it and she just bought hand warmer pads that hunters put in their pockets.

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I have Raynaud’s Disease which causes body temperatures to drop. I’ve learned to cope with it. I wear layers of clothes, use electric blankets and I wear an Ororo vest most of the time. Surgeons wear these to stay warm when they are in surgery. These are fabulous! I also wear Little Hotties Adhesive Toe Warmers on my feet/tops/pants and put OCOOPA Quick Charge Hand Warmers in pockets of my clothing. It’s been expensive purchasing these items, but they have certainly improved my quality of life.

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