Fibromyalgia and Me

I have Fibromyalgia. Well, technically, I probably have Fibromyalgia. According to my doctor there is no single test that can tell you that you definitely do or don’t have Fibromyalgia. It’s all about looking at the “constellation of symptoms” and ruling out other possibilities. It boils down to me “most likely” having Fibromyalgia. There is no cure.

It’s good to have a label, I think. It’s useful to have a named disorder to explain why you’ve had more days off sick than the average person. Although having a label doesn’t really change anything in terms of how I am feeling.

I also have disk degeneration in my lower back.

What is Fibromyalgia?

Fibromyalgia is a neurological condition where our bodies, in essence, overreact to things. This causes pain, fatigue, digestive issues, anxiety etc.

Here’s a quote from a website called VeryWell which I think explains it well:

Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.

That’s what’s happening with pain signals in those of us with this condition.

The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn simple things like mild pressure or even an itch into pain.

When those pain signals reach the brain, they’re processed by something called serotonin. However, we don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.

This is why we have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the nerves and brain turn into actual pain.

Other substances in the patient’s brain amplify a host of other signals—essentially, “turning up the volume” of everything. That can include light, noise, and odor on top of pain, and it lead to sensory overload. This can lead to confusion, fear, anxiety, and panic attacks.

From: https://www.verywell.com/a-simple-explanation-of-fibromyalgia-716142

It seems that Fibromyalgia can be triggered by a physical injury. I can only assume that when I first hurt my back 3 1/2 years ago, with the hideous sciatic pain, it sent my nerve system into meltdown. All because of a cold, where my coughing made my back twinge.

How does it affect me?

  • I am in pain all the time. The severity and location varies. My legs hurt. My left leg in particular hurts all the time. I get pain in my feet, knees, calves, thigh, and hips. My arms hurt. I get pain in my hands, lower arms, upper arms and shoulders. My neck hurts. My head hurts. I can usually deal with the pain around my body, although of course it gets me down and makes physical activity difficult. It’s when it is in my neck and head that I am at my worst. It generally turns into a migraine and I am unable to function. I also have pain in my back that I put down to the disk degeneration.
  • I am nearly always tired. I rarely if ever wake up in the morning feeling refreshed. Generally I don’t sleep through the night. I wake up repeatedly and struggle to get back to sleep. I go to bed around 9pm each night because by then I am physically exhausted. Since I’ve started taking some new meds I have occasionally slept through the night which is an improvement, but I still wake up tired. As my family will tell you, I’ve always been grumpy and irritable when tired, so imagine what I’m like when I am almost always tired
  • I am anxious. I have always been a bit of a worrier. In recent years this has become worse and I get more physical symptoms of the anxiety like palpitations.
  • I have digestive issues. I have IBS (irritable bowel syndrome) which is affected by both physical and emotional stress.
  • I have issues with smells and light. I can feel unwell due to having to deal with bright light or strong smells.

Why am I telling you this?

I’m telling you because I’ve been having a flare for the last couple of weeks, and I haven’t been able to find the motivation to blog. I usually do the weekly photo challenge, but I couldn’t find the right photos, and the weather wasn’t helping. I’ve just been surviving. Even though I’ve been in pain for the last 3 1/2 years, I always used to hope that one day it would stop and I’d be fixed. But now I need to adjust to the fact that this is me now. This is me for the rest of my life. I need to learn my new limits and avoid pushing myself too far. I need to accept that this is how things are, and make the best of it.

Remember that there are many other ‘invisible’ illnesses like Fibromyalgia. People who look fine may not be. Whether it’s physical or mental illness (or both), everyone has their own burden to carry.

Let us be kind. That’s all. Just be kind.

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Nothing More

I would appear
To be nothing more
Than a list
Of ailments
Existing
In frown lines
Yearning for slumber

A Quiet Moment

I’m at work this week after a week off last week, and it’s hard going! So I’m just going to post some lovely soothing wild flowers, and have a nice quiet moment 🙂

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shell

this pain takes me from myself
a bitter frozen shell
eaten with fatigue
angry with the humdrum
endlessness of it all
weary of weariness
forgetting joy

lost words

Words can be slippery, watch your step
A photo I took 4-5 years ago in a town in Dorset of an inscription in the pavement.

lost words

search
of futility
lost words
stay lost

oh to pour out my soul
but wordless I wait

abandon
a hopeless task
seek instead
sleep

woodlouse

I am what I am
and what I am right now
is barely functional
woken by woodlouse
dive-bombing
on my head 
shocked into
wide-awake-ness

I have stumbled through the day
eyes dry and sore
dragging my aching limb 

but at least it was just a woodlouse
and not the sky falling in
as the roof flew off in the gales 
and the sodden plaster splattered my face
drenching my pillow 

at least it was not that
(though, heart racing, I felt it was)

woodlice feel quite damp
when landing on your skin

I should like to be a woodlouse
quietly pottering
no worries
or concerns
and if alarmed 
I’d curl up in a ball
quite safe

but
not falling

not falling
on anyone

that is not my wish

21st October 2014, non-fiction

sleep-lack

consistently weary
persistently dreary
walking in a grey, drab world
muffled and gruffled
I continue snappily
less than happily
if I could clear this sleep-lack
if I could only find the knack
to sleep all night
without a break
without a wake
to shift my aches and pains
perhaps I’d get
my focus back
if I could find
the sleep I lack

loop

these are the doubtful days
the self-critical days
the days where all is looked at
through magnifying lenses
and found wanting
where every word and action
is analysed and over-analysed
and I’m so busy analysing
that more words and actions
slip out of me unbidden
snippy, snappy, grumpy-face
and the loop repeats

and still you say you love me

disconnected

I am here
but not here
unfocused
in this world
full of people
and noise

I am here
but not here
bubble-wrapped
among crowds
separate
alone

I am here
but not here
a puppet
pretending
to be human
yet vacant

grump-graph

my mood
is inversely proportional
to the amount
of time
I’ve spent awake
when I should
have been asleep
I’m tempted to draw a graph
though it’s unnecessary
no maths or science
are really required
just listen
to my voice
turned snappy and short
I am grumpiness
personified
so I try
to be nice
and actually
by trying to be nice
I actually get nicer
and in the end
I shake off the grumps
and the line
on my graph
goes all wonky
and proves me wrong