A Post About Chronic Pain From The Patient

A Post About Chronic Pain From The Patient

This one is going to be more serious, guys.  Chronic pain affects over 100 million Americans.  I am one of those affected.

I don’t want this post to sound like you’re reading an encyclopedia, but I feel like I need to give you a few facts before we go on so you can better grasp where I’m coming from.  Chronic pain is not temporary.  It’s not the same as getting an injury and when the injury heals, the pain is gone.  Chronic pain is defined as pain that lasts longer than 12 weeks.  For some, this can even remain for years or for the rest of their life.

 

Intro

In my journey to better myself, I have had to turn inward and check the pulse of my well-being.  Sure, I am a healthy woman.  I haven’t always eaten right or exercised appropriately, but for the grand sense of it all, I have a general healthy report.  Mind you, I am a registered nurse in my state and I see people day in and day out that are truly in poor health.  Please do not think I am having a pity party with what we are about to discuss.  I am very well aware that the card I have been dealt is nothing compared to the struggle of others.  I am so grateful for that.  I genuinely am.

Ok, now I feel I can continue with my story.  Hi.  My name is Staci.  I have suffered with migraines for the last 14-15 years.  They weren’t always as bad as they are now, and they started out feeling like something a little worse than a headache.  Over the years, they have morphed into pinpointed areas of intense and uncontrolled, stabbing pain.  It’s almost indescribable.  They sometimes leave me with an ice pack on my head in the bed fighting off nausea.  I watched a documentary about the Egyptians and how they found skeletal remains with perfectly drilled holes in the temples.  They deducted the holes may have been drilled to receive pressure or pain.  I feel ya, Egyptian skeleton man.  Sometimes, I feel like if I jabbed a poker in my temples and released pressure, my sharp pain would ease up.

::: Let me pause here to go take my nightly fistful of pills.  BRB :::

Chronic Pain Pills

 

Disease Progression

Ok.  I’m back.  Anyway, so over the years, they changed from one focused point on the very inner portion of my right eyebrow, to what is now laser-precise locations on my face, up my head (even on the sides), temples, behind my ears,  all over the back of my scalp and down my neck on.  Sounds fun, right!?  I had exhausted the extensive list of medications to take every day for prevention, as well as those “as-needed” meds to take when I’m having an actual migraine.  My pain was on one side or the other almost every single day with a generalized headache on the few days I didn’t have a migraine.  I had no idea what I was going to do and felt so hopeless.

 

The Low Point

I remember watching a travel show of the “Top (insert your own adjective) Destinations.”  The idea of exploring new places and cultures different from mine has always been a passion.  So here I am, watching this show, and one destination was a very cool adult version of a tree house.  In the jungle!  Shut your mouth!  I’m sure for someone else, their first thought would be to save the money or book the trip.  Maybe an idea of who you would take with you.  Wanna know what my first thought was?  “OMG how cool!”  Then I immediately envision myself there….with a migraine.  A fucking migraine!  Are you kidding me?  It was absolutely the saddest day of my life in that moment. My pain had encompassed even my dreams.  It was currently taking my present and had now laid claim to my future.

 

Stats V.S. Experience

1.5 billion (that’s billion with a B) worldwide suffer with chronic pain.  The most common types are Back pain (27%), Migraine pain (15%), Neck pain (15%), and Facial pain (4%).  Holy shit.  I envelope three out of the top four causes of chronic pain.  That is a ton of people just like me.  Does that make me feel better about hurting every day?  Nope.  It sucks.  But it does remind me that I am not alone.  I have friends, even if we have never met, that can understand what I am going through.  You know someone who is dealing with chronic pain.  Maybe it’s you?  You are not alone.  I am so sorry you are hurting.  I can only hope that advances can be made to help us all.

From experience,  you do not realize how much something wears on you when it does it a little at a time. Day by day, it builds up a wall.  (Or brick by brick, I guess.)  Years ago, the pain was excruciating.  That one little area was so taxing on me.  I had never felt pain like that before.  It was sharp.  Stabbing.  It pulsated and when I pressed against it, I could feel it beating.  I thought it was a blood vessel that would burst at any moment and it made me scared.

 

Chronic Pain and Me

As the years have gone by and the sites multiplied, that pain still hurts, but I have built up a very big tolerance.  For my average migraine, I can go to work.  I can somewhat perform my daily activities.  I may be more forgetful than usual, as every migraine I have kind of regresses my memory a little more.  But I can at least moderately maintain my daily routine because I have built up this tolerance to pain…and also because I have to.

You have to understand that someone with chronic pain doesn’t measure up on the pain scale the way you would expect them to.  I see this at work all the time and I can relate.  If I gave my pain to someone whom had never experienced it before, it would cripple them.  I can bet they would be in the fetal position and crying.  That used to be my exact same reaction. Over time, it changes.  You become an expert at dealing with it.   The same way someone becomes skilled at a job they have been doing for years.  I’m a pro.

I have been in the middle of debates between co-workers who exclaim that someone with a migraine wouldn’t possibly be at work.  I can attest to you that this is false.  If I stayed home every time my head hurt, I would have to quit my job and file for disability.  Some have to do just that.  I refuse to.  I’m only 33 and my life is in its prime.  However, chronic pain is the #1 reason for long-term disability in the United States.

 

The Extra-Low Point

But what else could I do?  I had seen the best doctors.  I had even been referred to a specialist in Neurology.  This resulted in a revolving door of the same meds I had already tried.  I was being told “We just don’t know a lot about migraines.”  “There’s nothing else we can do for you.”  I was in a low spot.  Sitting in front of the television and watching my dreams of exotic travel flush right down the toilet.  Having pain every. single. day. makes you depressed.  You can try to find happiness in life but the actual feeling of pain makes you extremely sad.  That every day drag of having to feel the same fucking pain leads to frustration, which also makes you depressed.  Over time, this depression leads to other feelings. Feelings you don’t want to realize.  Feelings you don’t even want to admit to yourself.

Did I really want to kill myself? No.  I wanted to be in a tropical jungle treehouse having the time of my life without having migraine pain.  That’s what I wanted.  The thought that my life may only consist of being in the bed with daily pain did make me think of suicide.  The idea of having to hurt for the rest of my life did make me think of suicide.  Maybe the more that I say it out loud and admit to that, the easier better it will be for me step over those thoughts.  I have found that I have to keep climbing over that way of thinking and stomping them back down as the pain continues.  Since 1 in 10 Americans are dealing with chronic pain, I can guess that someone I know is dealing with the same thing that I’m dealing with.  77% of those dealing with chronic pain are depressed.  51% feel they have no control over the pain.

 

Pushing Forward

Late last year, I started seeing a new Neurologist.  I am still so happy that migraines are her specialty.  She tackles my pain with gusto because she genuinely wants to find some intervention to help me.  I have since learned that I suffer from something called Neuralgia.  Particularly of the Trigeminal and Occipital variety.  This means that I have three sets of nerves (not blood vessels, as I previously thought) that are, for whatever reason, soooo overstimulated and cause my brain to sense pain in all those areas those nerves runs along.

 

Treatment

I currently receive Botox injections in my face, scalp and neck.  That means 31 injections every 12 weeks PLUS the 14 or so occipital nerve block injections I receive about every 2-3 months.  I can say that I have received some relief from these.  Do they hurt like a mother?  YES!  But I’ve been dealing with my pain for so long, that those injections really don’t seem that bad.

::: Link to a Botox post coming soon :::

 

I am also working on changing my diet and exercising more.  Diet and exercise are a treatment option for most of the disease processes I come across at my job.  I have also began trying to be more calm and reduce stress.  I’ve basically given up alcohol and my yummy craft beers.  I used to love trying new ones but now they only make me think of pain.  I have an encouraging support system, which I believe is KEY.  No matter how far along the treatments come, you will need those around you to keep you motivated on days like this weekend when I was on day three of a solid migraine that I could not kill, no matter what I tried.  Those times are the ones when your mind reverts back to the old thinking and you need someone to pull you out of that gutter.

::: See My Post About ASMR For Stress Relief Here :::

 

The Future

I would love to do a separate post on my condition and treatment options.  Let me know in the comments below if there are specifics you would like me to post about.  This is why I am wanting to include you in my journey to wellness.  I can’t fold my arms up and expect things to change.   Changing my lifestyle is a must and changing the way you live is hard.  I may need you to keep me motivated.  Right now…my scalp burns.  Like, for real, on fire.  Burning.

I would love to hear your comments!  Please leave me a comment below.  Feel free to email me at gingeredstate@gmail.com if you just want to talk.

The number for the National Suicide Prevention Hotline in the U.S. is 1-800-273-8255.

24/7.

365.

 

Stay Inspired

Staci

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