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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.

jeff97 | @jeff97 | Mar 13 9:44am
In reply to @weismanna "I am relatively new to Raynauds, and recently learn it is secondary. I am trying to..." + (show)
@weismanna

I am relatively new to Raynauds, and recently learn it is secondary. I am trying to learn about which of my other symptoms may be related to the Raynauds. I have lots of foot,
leg cramping.

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I have secondary Raynauds associated with my hypothyroidism. I used to have attacks after completing long runs in cold weather, where the runs were 2 hours or more. My only symptoms were very white fingertips, either one or 2 joints on a few fingers on each hand. One time I was warming my hands in hot water, and I saw the blood flow resume to my finger tips. The blood looked like swirling ink in my fingers.

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birdieca | @birdieca | Mar 13 2:21pm

I have had Raynauds for 50 years. I am 75. Had a positive ANA when I first noticed it. Diagnosed with scleroderma in 2002. 80-90% of sclero patients have Raynauds. I also have PAH secondary to scleroderma.

As part of my treatment, I was on some drugs for PAH like viagra which actually also helped my raynauds. These drugs open up the blood vessels. I use heated rice bags and handwarmers to help keep me warm. Like others, I wear gloves (especially in cold supermarkets!) and try to stay warm.

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pamper | @pamper | Mar 14 10:12am

mine pretty bad (lupus related.) PCP put me on calcium channel blockers-helped enormously! I also have high BP, so he replaced my Lisinopril with this. ur daughter may not tolerate if BP normal... my rheumatologist suggested viagra-says he sees great results with it with his patients

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pamper | @pamper | Mar 14 10:14am
In reply to @windwalker "@oregongirl Hello. My daughter has Raynaud's also. Her's is pretty bad. She changes colors on a..." + (show)
@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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if hers is lupus related, tanning bed one of worst things could do. sun and tanning beds can make lupus worse

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pamper | @pamper | Mar 14 10:16am
In reply to @lauren123 "I didn't know there is primary or secondary Raynaud's. I am on a sharp learning curve..." + (show)
@lauren123

I didn't know there is primary or secondary Raynaud's. I am on a sharp learning curve here. I am 69 and my mother also was told she had this disease. My symptoms were diagnosed years ago by our primary physician, Both of us experienced cold chills and very wrinkled hands. I'm very interested to hear more since I think have other related issues. Thank you for starting this discussion.

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primary disease in of itself, not caused by another disease. mine is secondary, as it is caused by my lupus

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pamper | @pamper | Mar 15 4:26pm
In reply to @lioness "My understanding is it's when your skin gets cold but if you live in Texas I..." + (show)
@lioness

My understanding is it's when your skin gets cold but if you live in Texas I don't think you have to worry. I could be wrong but that's my understanding

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air conditioned establishments tuff in summer. and just getting ice outta ice tray huge task. and its my understanding that its not just cold that can trigger, its also stress...

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1 reply
pamper | @pamper | Mar 15 4:29pm
In reply to @pamper "air conditioned establishments tuff in summer. and just getting ice outta ice tray huge task. and..." + (show)
@pamper

air conditioned establishments tuff in summer. and just getting ice outta ice tray huge task. and its my understanding that its not just cold that can trigger, its also stress...

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btw, in addition to meds, I've found visualizations help me. I can "think" myself back 2 pink sometimes. I visualize my capillaries as huge, raging rivers of red, hot blood. sounds gross and "la-la land" to some, but whatever works...

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yeb | @yeb | Mar 16 11:46am

I have had Raynauds since the 1970’s. I buy packaged hand warmers in bulk. They keep my fingers from turning blue and purple. I was diagnosed with PMR but my rheumatologist says Raynauds is often connected to Lupus.

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