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

Posted by Terri Martin, Volunteer Mentor @windwalker, Apr 27, 2018

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.

boatart | @boatart | Jan 12 11:18pm

2 months ago. I was put on prednisalone. ( steroids) it wasn’t for that problem. I have a mixture connective tissue . However the bonus is it’s helped with my dry eyes . Oh! so much better ! Beginning to taper them down as I cant stay on them . 🤞 they remain comfortable . Good luck with your treatment

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myallslodge | @myallslodge | Jan 17 3:52pm
In reply to @mireckij "Please protect your fingers. Amazon sells heated gloves for Reynaud's syndrome. When you see red, then..." + (show)
@mireckij

Please protect your fingers. Amazon sells heated gloves for Reynaud's syndrome. When you see red, then white, then blue, it means that blood flow is being restricted to your capillaries. It can be painful when your hands warm up again.

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Thank you Mireckij for the information regarding the heated gloves.
This has been very helpful.
Though they are quite expensive the help can not be overemphasised.

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1 reply
frances007 | @frances007 | 6 days ago

I have had Raynaud's for years, and once I began my IVIG for the immune deficiency, the problem has worsened, another side effect of medication that on one tells you about. Best of luck.....

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1 reply
bruizersmom | @bruizersmom | 4 days ago
In reply to @sandicam "I have had Reynard for years..until i.mentioned it to my arthritis doctor nothing was ever done..." + (show)
@sandicam

I have had Reynard for years..until i.mentioned it to my arthritis doctor nothing was ever done about it. I also have RA which they say is associated with reynauds. I read up.on it all the time....Air conditioning when I'm out in a store brings it on to the point that I have to bring a heavy sweater and or leave the store. Finally I found that if you keep your core ( which is your chest) warm in AC it helps immensely. I take nothing to control it. My extremities turn pure white and painful. I have fallen thru the cracks with my Arthritis doctor.In today's world you have to be in charge of your own health and the doctor gets paid for your time.in doing so...Something wrong with this picture.

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Wow! A Raynaud's Group! I've had it since 1976 and only officially confirmed it this month by a new podiatrist. I typically have 2 to 6 purple toes, need to go to extremes to keep myself warm (I also have Parkinson's Disease which comes with extreme sensitivity to cold temps), but in particular, have difficulty keeping my feet warm. I have Osteoarthritis, a seizure condition,. and a host of other difficulties (oh, and peripheral neuropathy), but the worst problem is my feet! They not only get super-cold, but super painful so that walking becomes limping, or worse, just getting off my feet and into bed where I have a heated bed-warmer.
You are right about falling thru the cracks. I think all of us who have multiple disorders and multiple symptoms are just a quandary, a curiosity, to doctors. It seems like they look at ONE thing, and one, only. The rest of our complaints are dismissed and we're treated like nut cases. I was actually referred to as crazy while hospitalized. Actually, I'd say that in fact I was surrounded by uneducated pseudo-professionals, in particular, the RNs, but the doctors went right along with them!!
Stay warm! Over-dress in layers. Two pairs of socks, unless you have strong neuropathy and the burning is a greater prob than the freezing! Hoooeee....we are a mess and yes, we're in charge. KIf only doctors were mandated to cross-educate to a greater extent...or something. But for now, we only have eachother.

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bruizersmom | @bruizersmom | 4 days ago
In reply to @frances007 "I have had Raynaud's for years, and once I began my IVIG for the immune deficiency,..." + (show)
@frances007

I have had Raynaud's for years, and once I began my IVIG for the immune deficiency, the problem has worsened, another side effect of medication that on one tells you about. Best of luck.....

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What medication are you on for the Raynaud's? What's IVIG? Now that I finally have a doctor who says Yes, you have Raynaud's, I'm out there looking for help.
Thanks.

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bruizersmom | @bruizersmom | 4 days ago
In reply to @myallslodge "Thank you Mireckij for the information regarding the heated gloves. This has been very helpful. Though..." + (show)
@myallslodge

Thank you Mireckij for the information regarding the heated gloves.
This has been very helpful.
Though they are quite expensive the help can not be overemphasised.

Jump to this post

TEMU takes longer, I know, but if you search "Local" you'll find Temu suppliers in the US who are almost as fast as Amazon, and Temu has heated socks as well as gloves, and heated bed pads, too.

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trustissues | @trustissues | 15 hours ago

Im still trying to figure out what exactly is wrong with me. All of my searches keep leading me here. I live in northern CA , in the winter it only gets to about 31°F at the coldest. For me , anything below 50°F has my finger tips feeling first like they have been set on fire, then smashed with a hammer. Today it got so bad i actually left work. I wear gloves, i even put hand warmers in my gloves. It does not help. Warm water helps , but i work outside and am not exactly close to the bathroom. Hot air from the hand dryer in the bathroom also helps. It takes about 2 minutes to thaw my hands each time i need to use it , which is half the time I'd be waiting for the water to warm up and its about a minute walk to the bathroom and a minute walk back to my work station. As you can see this is not very efficient when i need to do it as often as every 20 minutes depending on how cold it is , how much moisture in the air , wind chill factor etc. I have a pretty high tolerance for pain but i was in tears when i left work today. I dont know if it was from the pain in my fingers or the frustration of losing this ongoing battle with the cold but if anybody out there has advice that does not require moving to arizona or going to see a "medical professional" I'm all ears. Thanks for taking the time to read my story

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2 replies
bruizersmom | @bruizersmom | 8 hours ago
In reply to @trustissues "Im still trying to figure out what exactly is wrong with me. All of my searches..." + (show)
@trustissues

Im still trying to figure out what exactly is wrong with me. All of my searches keep leading me here. I live in northern CA , in the winter it only gets to about 31°F at the coldest. For me , anything below 50°F has my finger tips feeling first like they have been set on fire, then smashed with a hammer. Today it got so bad i actually left work. I wear gloves, i even put hand warmers in my gloves. It does not help. Warm water helps , but i work outside and am not exactly close to the bathroom. Hot air from the hand dryer in the bathroom also helps. It takes about 2 minutes to thaw my hands each time i need to use it , which is half the time I'd be waiting for the water to warm up and its about a minute walk to the bathroom and a minute walk back to my work station. As you can see this is not very efficient when i need to do it as often as every 20 minutes depending on how cold it is , how much moisture in the air , wind chill factor etc. I have a pretty high tolerance for pain but i was in tears when i left work today. I dont know if it was from the pain in my fingers or the frustration of losing this ongoing battle with the cold but if anybody out there has advice that does not require moving to arizona or going to see a "medical professional" I'm all ears. Thanks for taking the time to read my story

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Either Amazon or Temu have Warming Gloves that are USB. You can probably by a longer cord and plug them in at work.

REPLY
gently | @gently | 7 hours ago
In reply to @trustissues "Im still trying to figure out what exactly is wrong with me. All of my searches..." + (show)
@trustissues

Im still trying to figure out what exactly is wrong with me. All of my searches keep leading me here. I live in northern CA , in the winter it only gets to about 31°F at the coldest. For me , anything below 50°F has my finger tips feeling first like they have been set on fire, then smashed with a hammer. Today it got so bad i actually left work. I wear gloves, i even put hand warmers in my gloves. It does not help. Warm water helps , but i work outside and am not exactly close to the bathroom. Hot air from the hand dryer in the bathroom also helps. It takes about 2 minutes to thaw my hands each time i need to use it , which is half the time I'd be waiting for the water to warm up and its about a minute walk to the bathroom and a minute walk back to my work station. As you can see this is not very efficient when i need to do it as often as every 20 minutes depending on how cold it is , how much moisture in the air , wind chill factor etc. I have a pretty high tolerance for pain but i was in tears when i left work today. I dont know if it was from the pain in my fingers or the frustration of losing this ongoing battle with the cold but if anybody out there has advice that does not require moving to arizona or going to see a "medical professional" I'm all ears. Thanks for taking the time to read my story

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hi @trustissues, there are medications--calcium channel blockers that are prescribed for Raynauds. But first, how are your magnesium levels. You might try a magnesium supplement. There is some thought that the spasms in the blood vessels cause the reduced blood flow. You might also try dietary vasodilators like beet juice, while waiting for a medical appointment.
https://www.healthline.com/nutrition/foods-that-increase-blood-flow
Working out of doors in northern CA sounds like a dream job.

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