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.

Profile picture for Terri Martin, Volunteer Mentor @windwalker

@oregongirl Hello. My daughter has Raynaud's also. Her's is pretty bad. She changes colors on a daily basis and at times looks like scoulding water has been poured all over her body. She is very self concious about it and has spent too many hours in the tanning bed trying to mask it. Her body seems to lack a 'thermo-stat'. By that, I mean that she feels like she is burning up no matter what time of the year it may be. Does your daughter have that symptom as well?

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@windwalker Oh yes, her toes go white, dead looking white.

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My daughter has tried the calcium blockers but it caused more attacks so now we are trying to keep her warm.

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https://my.clevelandclinic.org/health/diseases/9849-raynauds-phenomenon
https://www.raynauds.org/
https://limbpreservation.ucsf.edu/condition/raynauds-syndrome
https://www.pharmacytimes.com/view/common-drugs-that-can-cause-raynauds-disease
https://www.empr.com/home/news/which-drugs-are-more-likely-to-induce-raynauds-phenomenon/
Why try calcium blockers when it triggers Raynaud’s?
Medications and substances that can cause Raynaud’s phenomenon

Beta-blockers.
Caffeine.
Chemotherapy (bleomycin, vinblastine).
Cocaine.
Decongestants containing phenylephrine or pseudoephedrine.
Epoxy resins.
Migraine medications containing ergotamine.
Nicotine.
Stimulant medications (like methylphenidate) that treat attention-deficit/hyperactivity disorder (ADHD).

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Profile picture for artemis1886 @artemis1886

https://my.clevelandclinic.org/health/diseases/9849-raynauds-phenomenon
https://www.raynauds.org/
https://limbpreservation.ucsf.edu/condition/raynauds-syndrome
https://www.pharmacytimes.com/view/common-drugs-that-can-cause-raynauds-disease
https://www.empr.com/home/news/which-drugs-are-more-likely-to-induce-raynauds-phenomenon/
Why try calcium blockers when it triggers Raynaud’s?
Medications and substances that can cause Raynaud’s phenomenon

Beta-blockers.
Caffeine.
Chemotherapy (bleomycin, vinblastine).
Cocaine.
Decongestants containing phenylephrine or pseudoephedrine.
Epoxy resins.
Migraine medications containing ergotamine.
Nicotine.
Stimulant medications (like methylphenidate) that treat attention-deficit/hyperactivity disorder (ADHD).

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@artemis1886
Hi All, I got Raynaud's in 2021 post COVID-19 Pfizer Vaccine https://www.sciencedirect.com/science/article/abs/pii/S0264410X24011526. Here is a link to an article confirming this association.
The Scientists found genes related to Raynaud's: ADRA2A (alpha-2A adrenergic receptor responsible for vasoconstriction in response to temperature and stress) and IRX1 (responsible for blood vessel dilation). https://www.bing.com/search

From personal experience living with Raynaud's, these measures may work: staying warm, avoiding wind, taking things from the refrigerator with a napkin, warm meals, carrying with me electric Ocoopa hand warmers. You may find online gloves with electric warming inserts.
https://www.ocoopa.com/search

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Hi All, I got Raynaud's in 2021 post COVID-19 Pfizer Vaccine Here is a link to the article confirming association. https://www.sciencedirect.com/science/article/abs/pii/S0264410X24011526.
The Scientists found genes related to Raynaud's but no treatments associated with these genes: ADRA2A (alpha-2A adrenergic receptor responsible for vasoconstriction in response to temperature and stress) and IRX1 (responsible for blood vessel dilation). https://www.bing.com/search

From personal experience living with Raynaud's, these measures may work: staying warm, avoiding wind, taking things from the refrigerator with a napkin, warm meals, carrying with me electric Ocoopa hand warmers. You may find online gloves with electric warming inserts.
https://www.ocoopa.com/search

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How about your toes? Mine burn and hurt really bad.

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Hello 👋 I would love to join a support group for Raynauds. I feel I could contribute alot being that I have had raynauds since I was 35 and am now 66. So have had for 31 years. I have learned alot by living thru it and have it both in my hands and feet.

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The raynauds is just another symptom of me having an autoimmune disease called Limited scleraderma or crest syndrome. I have learned to cope with it and keep it under contrIl with many many tools in my tool box. Luckily have not lost any fingers ot toes but have some very close . Let me know when you get the support group goimng and I will definetly be a part of it.

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Yes. My hands will turn purple and my thumb can go almost black. They will also be ice cold. It can be very disconcerting. I will usually wrap my hands in a throw blanket to warm them up. I sometimes will wear gloves indoors.

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Profile picture for csmirat @csmirat

Hello 👋 I would love to join a support group for Raynauds. I feel I could contribute alot being that I have had raynauds since I was 35 and am now 66. So have had for 31 years. I have learned alot by living thru it and have it both in my hands and feet.

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@csmirat I've been suffering with it since my teens. I'm 69 now. 3 and sometimes 4 fingers on each hand, and toes on each foot. Never around anything that relieves it, but someone on another site said to put latex (surgical) gloves under your mittens or gloves! I heard this too late for this winter! It happens in the summer to me as well...

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