AIP, Uncategorized

A Day in the Life of Raynaud’s Disease

Raynaud’s has been coming up in a lot of my conversations lately so I thought I’d share a little glimpse of what my day is like as someone who suffers from this condition.

First of all a little background for you on Raynaud’s.  It’s referred to as a “Disease” but frequently also called a “phenomenon,” which is more accurate than “disease.” It is generally secondary to an autoimmune disease and known as “secondary Raynaud’s.”  Some people have “primary Raynaud’s” and have much more intense symptoms, most sufferers have it as an underlying symptom of something else.  Once I am in full remission from my thyroid the Raynaud’s should go away.

It is not contagious and it is very unpredictable.  Raynaud’s is a circulation problem and an “attack” is typically brought on by the cold.  Anxiety, caffeine, stress, sugar, and sitting too long  can also bring on an attack.  Sometimes Raynaud’s attacks happen for no apparent reason at all.

A Raynaud’s attack causes the extremities (generally fingers and toes) to loose circulation.  Attacks vary in length of time and are completely unpredictable.  Sometimes they are over fast and sometimes they last for days.   Certain herbs, essential oils and medicines may help but not always.  For me regular chiropractic care and proper diet seems to control it the best (I’m starting back to the chiropractor this week!).

Last year was the worst year I’ve ever had.  I pretty much had an attack 24/7 and was scared to go outside.  So far this year has been semi-rough.  I am going to be trying out a new essential oil blend that I just discovered for during an attack and am eager to see if that helps.

My fingers and toes are pretty much always cold.  Even a 60 degree day can trigger an attack for me.  I have more attacks when I am busy, stressed out and when I have sat for more than an hour.  Being outside this time of year is horrible- I so wish I could take my son to play in the snow.

Here’s what a typical day might look like for me with Raynaud’s:

6:00- Wake up.  I get out of bed and am wearing fleece pants, long sleeve shirt and fleece over the top.  Next to my bed is a thick pair of socks which I pull on.  I put on a hoodie over my fleece.  The shock of getting out of bed often brings on an attack.

6:15- To the living room to read my morning devotional.  I turn on the space heater and pile up under 2 or 3 blankets depending on the morning.  My fingers are freezing cold by the time I am done.

6:45- Morning yoga. I turn the space heater to face my yoga mat and loose the bulky hoodie and my socks.  By the time my workout is over my feet are freezing but my hands have generally warmed up a bit.

7:15- Breakfast.  My hands get cold again while I pull food out of the fridge and chop vegetables.  I take my supplements and rub on my oils while saying a healing prayer.  I heat up some water for my morning tea and wrap my hands around it to warm up while my breakfast cooks.

8:00-  Shower.  I’ve been dry brushing my skin and this seems to help make the attacks shorter.  A typical attack is over within half an hour unless it’s extremely cold out.  I get warm in the shower but within 10 minutes of getting out my fingers and toes are cold again.

9:00- I sit down to work for a bit.  Typing is painful the more cold my fingers are- it makes getting work done difficult this time of year. Sometimes it spreads up my legs and my legs start to hurt.  I get up every 15-20 minutes to walk around and rub my hands together.

10:00- My fingers and toes are still cold and I have to go to the store.  I pull on a pair of knee high socks, long johns and wool socks.  It’s only about 40 degrees out and even though I put on my mittens I still loose circulation in my fingers and toes while I walk to the car.  If I’m lucky they’ll just turn white, sometimes they turn purple or shades of blue and black.

10:15- At the store.  Driving is sometimes a bit unnerving when your fingers and toes are in pain or numb.   I try to avoid going out as much as I can.  I get inside the store and try to pick up a jar.  My hands are so cold from walking into the store and through the cold section that I can’t feel anything, I drop the jar and it and it shatters.  I go tell an employee.  They’re always gracious and often are familiar with Raynaud’s.  (usually if I need a jarred item my son grabs it or I ask an employee to help)

11:00- Home to make lunch.  I have been infusing fresh ginger for 12+ hours and I heat some up with warm hemp milk, turmeric, and a dash of honey.  This helps my circulation a bit and if I skip having turmeric or ginger for a couple of days my attacks are much more intense.  My fingers and toes are still cold but the warm drink helps.

12:30- I’m shivering outside of school waiting to take my son.  Even if the sun is shining and others are in a sweatshirt I am covered in a coat, hat and gloves.  I always wonder what people think about me.  I get back in the car and can’t feel my feet at all.  I crank on the heat, massage my hands and legs, and wait for the attack to calm down enough to be able to drive.

1:00- I have a meeting.  My fingers and toes are already cold.  Sitting aggravates it even more and I’m rubbing my hands together and getting strange looks from others at the coffee shop where the meeting is.  After an hour I excuse myself just to get up and walk a bit because my legs start to hurt and my feet are stabbing with pain.

3:30- The sun is starting to set and it’s cold out.  I walk up to school to get my son and by the time we walk back to the car I am in a lot of pain.  My fingers and toes are all white- some have started turning blue.  We may sit in the car for a while waiting for me to be able to safely drive us.  As the attack calms I am in a lot of pain.  I clench my teeth and work my way through it.  Seeing me in a lot of pain upsets my son and I try to cover it.

4:00- We get home and I change back into sweats and the dryer is done.  The glorious dryer!  I line dry everything in the summer but when it’s cold I use the dryer.  I pull the laundry out and dump it on myself in the living room chair. It warms me up more than anything else.  I know I won’t fully warm up until I go to bed.  I massage in some essential oils, make a cup of warm magnesium water and do my best before we eat dinner.

5:45- We go get the mail (our mail comes really late).  Walking to the mailbox it’s cold and dark.  I still haven’t fully recovered from the attack at school and am in pain as it gets worse.

6:00- Dinner time.  My son has to get out the dishes for us and carries my plate.  My fingers are so cold that I am worried I’ll break something.  I try to fix as many dinners in the crockpot as I can because I know evenings are always worst.

7:00- It’s bed time for my son.  Every joint in my body aches and my son complains that my fingers are cold while I rub his back.  I head out to the living room to work some more- usually under several blankets with the space heater.

10:00- Bed time.  If I’m lucky I’ve regained the warmth in my toes before bed and just have my fingers to worry about.  I rub on some more oils and get into bed under several blankets.  Eventually I warm up enough to fall asleep.

This is a typical day for me this time of year.  During the warmer months I may occasionally have an attack but not very bad.  I’m hoping being under chiropractic care again will help with this winter.

I share this with you so you’ll understand more about what my experiences are like.  Raynaud’s isn’t well known and I often get the feeling that people think I’m being overly dramatic or faking it.  I assure you it is a real condition which causes extreme pain and is very unsettling to experience.

If you have a loved one with Raynaud’s please support them by helping out when it is cold, helping to warm them up and being patient and understanding.  Don’t be afraid to ask how they’re doing- we’re an often overlooked group. Warm baths are always nice.  For people with bad cases of Raynaud’s they’ll often need someone to drive them or run errands.

9 thoughts on “A Day in the Life of Raynaud’s Disease”

  1. Thanks for sharing. So few people understand the struggles that can occur just doing everyday things, and its hard to explain it to them. As someone with Raynaud’s since the age of 16, it means to a lot to know I am not the only one.

    Best Wishes!

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    1. So glad to have written something that you can share with people to help them understand. There are a lot of us out there suffering with this condition but not a lot of awareness. I’m hoping to change that!

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  2. I was wondering what the chiropractor does specifically that helps? What frequency is your preferred. Thanks for sharing & enlightening.

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    1. Hi there-
      Chiropractic helps to keep your spine in proper alignment which keeps your entire nervous system and sympathetic nervous system in alignment. When everything is in proper alignment the blood vessels don’t constrict as much and Raynaud’s attacks are significantly decreased or eliminated all together. Personally I find the best results going once a week. I really like this article with a bit more information too http://www.lifesymmetrychiropractic.com/raynauds-syndrome-and-chiropractic/

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