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Raynauds?


lalalisa
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Hello,

I've recently (over the past month) been experiencing episodes of numbness in my fingers. The episodes are becoming more frequent and just this week i've noticed it in my toes. Sometimes my fingers turn completely white - looks really weird!

Some questions:

-For POTS patients do the same things cause an attack? (cold, stress) Or does the fact that we have low blood volume and poor circulation just cause our attacks?

-Is possible Raynaud's something I should talk to my Dr. about? (is it worth making an appointment or calling?) ....or is this just another POTS symptom that I should add to my list and mention next time I'm at the Dr.

-What helps? (wearing gloves, anything?)

Thanks so much for any information/advice.

Lisa

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Hi Lisa,

I get severe cyanosis (blue), this is most often in my hands & feet but I also get blue arms & legs too. I was tested for Raynaud's & do not have it, in my case the docs think it is being caused by blood pooling, vascular stasis & vascular dilation.

Raynaud's is caused by vascular constriction & it most often occurs when the hands &/or feet are exposed to the cold. Usually when the hands are warmed up they go bright red & can become really painful. To check if I had this my finger tips were put under a high power microscope with intense light behind them, so they could see the blood vessels.

I don't know if Raynaud's is a common problem with POTS but I think blood pooling may be, others here will undoubtedly know more. With blood pooling, one method to help prevent it, one I have to do all the time, is to keep moving. (eg. I wriggle my fingers, hands, feet all the time). Hope this helps a bit.

Bronwyn

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Hi Lisa ,

This is rather a long answer so pin back your eyelids , take the phone off the hook , make a cup of tea/coffee and read on ........... ;)

I have Raynaud's and blood pooling , your symptoms sound more like Raynaud's to me .

When you go into cold area's like the fridge or freezer do you get a sudden of set of very painful fingers , and the pain seems to increase the longer you are in this cold area until you cannot stand it anymore ?

And if you have been in the fridge or holding something very cold like , milk carton or tub of ice cream afterwards do you get so much pain , then throbbing that you dont know what to do with your fingers , I'm talking pain that makes you want to cry .?

If the answer is yes then its probably a 'welcome to the Raynaud's club'. :( I have it in my fingers, toes and the end of my nose ........... :P

You should go and see your doctor explaining about the fridge /freezer problems and all the other cold related problems you are having with your hands .

They can do tests , I had them done about 30 years a go so they may be a bit out of date now .

1.........they place your hand in cool water then photograph it with a thermal imaging camera ..........mine were coloured blue /green on the fingers and almost black at the ends , but definitely not a nice pink/red colour.

2. They blow cold air over your hands then photograph them again.

3. They look at your nail beds under a special lens , dont quite know why this one

Anyhow mine where all positive , along with toes and nose ( most normal places for it )

Having it in the end of your nose may sound and look funny , but when its just a little bit cold outside or I get a blast of air across my nose on a sunny or warm day my nose goes red/ blue or stone white ( mostly bright red ) and I look like I'm a heavy drinker :) but I'm te-total and my nose really hurts , so I have to walk around with a scarf e over my nose in Autumn/winter when I go out ALWAYS .

The answer to the question what do I do is simple ;

HANDS.

First you buy up as many pairs of gloves / mittens that you can find , anything that will keep your hands warm .

You need to put gloves everywhere you can think of from now onwards; the kitchen, bathroom , in the car, garage , garden shed , handbags , spares at friends or in there cars if you travel with them a lot., all your coat pockets ...........the list is endless.

You can also buy these little plastic pods that have a button in them , when this button is pressed it releases a wonderful warmth into the plastic gel like substance , this warmth lasts for up to 2-3 hours and has been a life saver to me on a cold day when I need to go out.

I have to boil them up to renew the heat but the new ones go in the microwave ( I think)

FEET.

You will need to buy some thick soled winter boots that are lined with lambswool and some very thick thermal socks ( 6-8 pairs should do it) I also wear ankle length thermal boots with my jeans or trousers most of the time and very rarely wear shoes now a days . If I'm going somewhere 'posh' like the wedding I went to last year , I travel to and from the wedding in ankle boots ( I have every colour you can think of :lol: ) and then change to my best shoes at the last minute.

Never go out without shoes on your feet , I know this sounds crazy , but I once rushed to catch my granddaughter from falling when she was a year old ( only onto the grass) I forgot and walked onto a cold concrete path , the pain was so bad I scared the child as I fell down holding my feet ..........needles to say I haven't done that again since !

Also never do any of the following things as the repercussions can be awful............

NEVER EVER go into a fridge or freezer without very thick gloves on them , OMG I've almost passed out with the pain doing this .

NEVER go into a shops fridge or freezer to buy something without your life saving gloves

NEVER...... put your hands under cold water to wash them .............another bad move .

NEVER......... reach into a swimming pool, the sea or a large deep puddle to retrieve something a child has lost ..........ooops to late forgot !

NEVER.........go into a swimming pool or the sea without testing the temperature of the water first , this means you will always have to ask someone you can TRUST for help , dont ask someone if you think they may say its alright when it isn't ' just for a joke' ................I've been at the end of one of these ' just for a joke ' and the pain can be excruciating along with the fact that if your Raynauds is very bad you risk falling into the cold water with the shock of it and then getting hypothermia and being

rushed to hospital ' just for a joke '

NEVER put your hands/feet into hot water to make them feel better.............NEVER ever do this or you will end up with chilblains on them or ( as I've been told by the doctor) you can damage the nerves /blood vessels in them .

The end of your snow ball playing has arrived :( along with making snowmen UNLESS you invest in some electrical heated gloves :P .........absolutley brilliant , best thing since sliced bread :P you should be able to find these on the net as I cannot tell you where mine came from as they are a present of someone ages ago .

If you want to know anything else ..............yep, there are other bits and Bob's to this rather long answer ( sorry ) but if you do have Raynaud's to really must look after your fingers /toes and I cannot stress how important it is .

AMI.

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Wow-

So many of you have been through so much testing! My doc DXed me with Raynauds based on symptoms alone. Initially, before I even knew I had POTS, my feet would occasionally get covered in painful tiny blisters, called chilblains. My feet would often get really, really super cold and I would be unable to warm them. Stress (or simply the feeling of having too much to do in too short a period of time) seems to exacerbate this for me. Sometimes submersion in warm water (and relaxtion) can bring the feeling and color back to my feet.

A few years ago, I had a really frightening episode where one of my fingers turned blue/black and wouldn't pink back up. I ended up hospitalized for several days with what the docs called an ischemic finger. I had the numbness you describe and no matter what I did, I couldn't get blood back into that finger.

I suspect that POTS predisposes us to Raynauds. We often have blood pooling in our extremities. If our blood vessels also clamp shut (for whatever reason) we present with Raynaud's symptoms. It seems really common with POTS patients.

All the best!

Julie

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Hello,

Thanks so much for all of the information! Wow, it sounds like you guys really suffer from this.

I'll try to answer some of your questions...

-I haven't gotten any sort of blisters or anything...that sounds painful!

-It sounds like if I have Raynaud's it must not be nearly as severe as you guys....I wouldn't describe my pain as excrutiating - closer to really annoying.

- I do appreciate all of the tips and Willows thanks for all of the details! I learned so much and I had no idea that some people have to wear gloves constantly and completely alter there lifestyle with this!

-It will be interesting to see if my symptoms improve somewhat as the weather gets warm.

Thanks again!

Lisa

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