Raynaud's Phenomenon

[Dizzy Dame]

I was just at my cardiologists today because I've been having blue feet/fingers and he diagnosed me with Raynaud's phenomenon. He's not sure if it's connected to my POTS...he's going to talk to Dr. Biaggioni at Vandy and get back to me.

Does anyone here have Raynaud's? How do you treat it? Does it go away? Does it have to do with POTS?

Thanks

Lauren

[Marie]

I have Raynauds in my entire body. My hands turn purple, blue, gray/black, and white. Since going on Norvasc, they turn colors less often and they have not turned gray/black. They still turn purple at times throughout the day, but not as often or as dark. I teach, so the kids and adults were freaking out at the color of my hands. Now, I do not have to hide my hands as often. I also had very weak arms and tingling in my hands and arms. On some days, I could not even hold a book in my hand. I have not had weakness in my hands or arms since being on Norvasc. I take Norvasc twice a day. My neurologist said I am still cold because of the Raynaud's and/or autonomic neuropathy. The Norvasc is supposed to stop the blood vessels from being rigid and constricting so much. Norvasc does not lower blood pressure if the person has normal or low blood pressure. I am also less dizzy on the Norvasc. Every so often I try to stop taking the Norvasc, but all of my symptoms come back. The neurologist said she is not sure if the Raynaud's has to do with POTS/autonomic neuropathy.

Good Luck,

Marie

[Sunfish]

hi lauren -

i have it as do a good number of folks on the forum...you may want to do a search though i think more often it's just been mentioned in passing. i've been told it's probably related to my neuropathy but i don't have a severe case of it (raynaud's) so honestly for me it's the least of my problems. it varies a lot in terms of home much it affects someone...for me it's "just" an annoyance.

melissa

[dizzygirl]

i have raynaurds aswell.. my potsy doc dx'd me with it afew months ago..i was given no treatment for it...

[Dizzy Dame]

Thanks guys for answering. The Raynaud's symptoms I have are more of an annoyance than a real problem. I get T'd off having my feet feel so cold all the time, and the blue toes were disconcerting until my doctor told me it's not much worth worrying about. I'm hoping the numbness/pain I've been having has to do with the Raynaud's and isn't a progressive neuropathy. I'll find out for sure in August when I go up to Hopkins...in the meantime, I'm buying some polar-fleece booties and some mittens

Hugs,

Lauren

[MotleyLori]

I have Raynaud's. It was the first part of this syndrome that was diagnosed in me over 20 years ago. No one gave my EDS or POTS a name until 2 years ago after years of looking for answers on my part. My hands, feet and most likely esophagus are affected. For me it is more than an annoyance. I used to hike and hunt, etc in the winter months. I developed lesions (chillblains) on my toes from the Raynauds. These are purple, painful lesions where the blood forms blisters under the skin, first they itch, then they hurt, then they turn purple,black and take a long time to resolve.

It seems our brains over-respond to what they percieve as cold and shut down the small vessels to divert blood and oxygen to the brain, heart, kidneys. Raynauds is considered more of a nuisance than anything else. Keeping warm and calm helps most people. Do a search on the Raynaud's Association for more info!

Lori

[willows]

Hello,

I to have raynaud's , was first diagnosed 30 years ago .

My hands, feet and the tip of my nose..................

Sometimes just having a slight wind blowing over my nose makes it go first bright red then blue .............my hubby likes to kid people that its not the raynaud's but the excessive amounts of 'gin' I drink each day !!!!! ( I'm tee-tottal) .............thats OK as I get him back by asking ( who ever it is ) if there's a public loo near as hubby needs his incontinence pad changed soon................ that shuts him up !!!!!

Mine has basically said the same all these years , winters the worst time ....or........going into the fridge /freezer ................its gloves , hats and scarves for this .

Willows............by the way hubby and I have a strange sense of humour and are always teasing each other, its how we have kept 'sane ' all these years.!!!!

[Foxyblue]

Hey I have it also but as mentioned by the others, it really is the least of my problems. As far as I know, there is no medicine or anything to take for it. I have noticed that in the winter time, my pinkie toe and maybe the toe next to it will go numb and turn stark white. If I take off my shoe and rub it and put it near the heater, eventually it comes back. If I hold onto my son's stroller too tight, one or more of my fingers will go numb and turn white and feel frigid. I just shake them out and rub them on my sweater. Hope this helps.

B

[Lukkychrm42]

i've been told that I have it, as well, related to neuropathy, but it's also not a huge problem for me. For some, I've heard it can be excruciating. For me, it's mostly just my feet, and when it gets bad, I live in slipper socks and sometimes mittens. (Though when it gets worse, those don't seem to help, but I do like the 'fuzzy' feeling!)

I hope it's not unbearable, and I'm sorry you're dealing with this as well!

[dawn]

My doctor added it to my list a couple of years ago. I sit in his office and my legs and feet are purple. (Flouresant lights make it look worse!)

He says it's part of the neuropathy. I get cold hands and feet and a cold nose. Alot of times at night it feels like a cold breeze is blowing on my face. My feet are usually so cold they are numb.

No suggestions: Sorry.

Dawn

[dizzygirl]

yeah i wanted to add that in the winter time especially or it i run my hands under cold water.. that my hands and feet and nsoe dont just get like cold.. but cold to the point that they hurt!! and once they "thaw out" its a burning painful ouchies process!

that in the winter time.. when you go out side.. dress really warm especially the hands and feet.. I used to have to wait for about 30- mnutes or more outside in the blowing snow... waiting for the darn bus.. and that was pute torure for more then one reason!.. but i'm to the point now that i dont leave teh house in the winter unless i go directly from the house to a car or cab.. that is warm and not cold.. and i wear triples on socks and gloves.. and my face is so bundled up that you have to peel away the multiple layers of my scarfs wrapped around my head and aface.. lol..

dont know why i'm teeling you all this.. i just fond out not to long ago i have raynaurds.. but have had the probs for a long long time!

[Wufflebear]

I have not been diagnosed with it, but I do office work all day from home and the last two years I get bouts of it. Used to just be a finger or two.. Now it is all fngers and the left thumb. Makes typing a tad weird. /:

[DADofPotsSon]

I and my youngest sister have the raynauds and have had it for 2-3 years each. EDS is suspected as the cause, and the only one item of EDS we have. Grandma had very severe EDS, Dad (85) has it good too, and my youngest son (26) has EDS/POTS/NCS.

By accident I have found that a very very small glass of wine will knock it out very quick. hmmm I guess it must relax the body? Also I keep a heating pad at my desk for my right foot toes and only the right foot. Warm water helps the fingers. I still love it outdoors in the winter and will continue but now need to take many precautions.