CHRONIC PAIN – This is my pain

Chronic pain spoonie experience, fibromyalgia

If you know me, whether through my internet presence or in real life, you might know that I have chronic pain.  I blog about it, and I sometimes even admit to it when I’m face to face.  But what does that really mean?  What is it that I’m talking about?

The term ‘chronic pain’ is pretty generic; it covers a broad range of possible scenarios that are as individual as the people who experience the pain.  Telling you that I have chronic pain is really about as descriptive as telling you that I bought a new vehicle – it would leave you with a lot of questions.  Make? Model? Colour?

I could resort to a ‘clinical’ description which would look something like: any pain that lasts more than three months.  Yes, I know, not much more helpful.

CHRONIC PAIN - This is my pain

So, when I tell you that I suffer from chronic pain, what am I really saying?

To be honest, I struggle to find the words that would describe what exactly I’m feeling when I’m in pain.

I can tell you that I’m pretty much always in pain. There are a few moments when I’m not in pain or at least the pain is below my awareness.  This sometimes happens first thing in the morning, when I haven’t quite woken up yet, and my awareness of my physical body is dimmed; I’m almost tricked into thinking that the pain has magically disappeared over night.  But, it only lasts for the briefest of moments before all the pain comes rushing back.  I suspect this might be one of the reasons that I’m not really a morning person, although, my mom might tell you that my dislike of mornings predated the pain.

The pain also disappears when I immerse myself in hot water – It’s one of the reasons that my hot tub is one of my favourite places.  It’s like the sensation of the hot water on my skin overrides the pain signals firing in my brain.  It’s not a lasting solution, however, because as soon as I emerge from the water the pain is back full force.

I’m also sometimes able to free myself from the pain by going for a run, a vigorous bike ride, or engaging in another type of aerobic exercise, but I suspect this might be more about the drop in my fitness level because of my health issues rather than an actual absence of the pain – my brain just can’t ‘hear’ the pain because of the lack of oxygen.  Once my breathing returns to normal, so does the pain.

I can tell you that my pain level isn’t always the same.  Sometimes the pain is just something that shimmers on the surface of my consciousness, not quite interrupting my ability to function, but also not quite gone.  Other days, the pain is fierce, and it dominates everything that I attempt to do.  Luckily for me though, on most days the pain is what I would term as moderate or manageable; I can go about my day pretty much as normal as long as I schedule in rests.

I can tell you that my pain pretty much encompasses my entire body.  It’s usually most intense in my arms and legs, but my neck often vies for supremacy in pain production.

Still following me?

Not really, eh?

To carry on with the new vehicle analogy: I feel like at this point, I’ve told you what colour, class and size my new vehicle is, but you still have no idea what make and model.

In other words, I haven’t given you enough to form a picture in your mine – is it a truck? SUV? Sedan?

CHRONIC PAIN - This is my pain

Maybe if I tell you what my pain is not, it would help.

My pain is NOT arthritis.  My pain is NOT the result of an acute injury or surgery.  My pain is NOT Complex Regional Pain Syndrome.  My pain is NOT due to the treatment for another illness, such as cancer.

You’re probably thinking that it would be more helpful if I told you what my pain is – gave it a name.

I actually can’t tell you what my pain is based on a diagnosis, because I don’t have a diagnosis – my doctor is still trying to figure it all out.

This lack of diagnosis leaves me in the amazing position of trying to juggle my life with chronic pain while not actually being able to tell anyone what’s wrong with me – it’s super fun.

I’m not saying that having a diagnosis would make anything better; but it might make it easier to enlighten people, like say my boss, about what’s going on with me.

The other thing about not being able to identify what is causing the pain, is it’s really hard to know what I should or shouldn’t be doing.  For example: for some conditions, like fibromyalgia, exercise is beneficial.  For other conditions, like concussions, exercise is detrimental.

WHAT ELSE IS THERE?

There is the possibility that my pain is all in my head.

Don’t get me wrong, when I say the pain is in my head, I don’t mean that the pain is imaginary.  Trust me; I’m not making this up.  What I mean is the pain could have psychological origins.  I do have an anxiety disorder, and a really pleasant side effect of my body being in a heightened state of arousal almost all the time is the malfunction of the pain signals – wires can get crossed.  Turns out our bodies don’t really have any idea if the pain we’re feeling is actually coming from a physical injury or if it’s just that our mind isn’t reading the signals right – nice work evolution.

The problem with the psychological pain/crossed wiring theory, is that my doctor doesn’t think that the symptoms really fit the profile – which leaves me back at square one.

Alright, I’ve done a lot of talking about what my pain is and isn’t, but what does it feel like?

WHAT DOES IT FEEL LIKE?

The best way that I can describe my pain is that it’s like when you’ve over exerted your muscles so much that above the regular muscle pain there’s this dull ache that radiates from deep within the muscle.  My legs always feel to me like I’ve just completed a half marathon.  In fact, the ache goes so deep that it feels like it’s my bones that hurt.  But it doesn’t stop there.  My joints like to get in on the fun.  On really bad days, my wrists, knees and neck throb with an intensity that makes me want to hide in a dark room and cry – at these moments I can’t even pet my cats when they come to curl up with me.

I don’t know if my description, as inept and insufficient as it really is, brings you any closer to understanding what it is that I’m saying when I tell you that I have chronic pain.

My pain experience isn’t the worst out there; there are people who have a much harder daily battle to fight than me.  That being said, it’s my experience.  It’s real for me.  It’s pervasive and drains my energy and emotional reserves.  It makes it difficult for me to react to the ups and downs of life with grace.  It makes it hard to be present for my kids.  It makes it almost impossible to keep up with the fast pace of the world around me; it leaves me on the outside looking in.

WHY SHARE THIS INFORMATION WITH YOU?

Describing my pain experience seems pretty negative; my hope is that by having a glimpse into my experience, because it’s the only one I’m really qualified to comment on, you might gain a level of awareness that might allow you to be a little more gentle when you interact with a person who has a hidden illness like chronic pain.  Their pain story will be different than mine, but their need for compassion and understanding is the same.

CHRONIC PAIN - This is my pain

I’m not lazy or inept – I’m in pain.  And that makes all the difference.

Thank-you for letting me tell you about my pain,

 

 

 

 

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