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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mourning

curling up in a chair
feet tucked under
book in hand

running up the stairs
in a rush
with springs in my feet

sleeping all night
rolling over and stretching long and wide
waking refreshed and full of life

scrambling up a muddy bank
hanging precariously from a branch
while getting that shot

bending to brush my teeth
bending to pick up the milk
bending to reach my shoes

squatting near to the ground for an age
following bugs and beetles
chasing grasshoppers

getting out of the car
just by simply getting out of the car
and standing up

walking for miles
up hill over tussocks
down rough woodland paths

even mowing the lawn
vacuuming the carpet
scrubbing the sink

just existing
without the constant awareness
of the pain

 

I know I should be concentrating on the positives of what I can still do, but it’s hard when I’m mourning the loss of the simple things due to this constant pain 😦

Fluctuating State of Mind

My state of mind has fluctuated quite a bit this morning. I realised the day was bright and calm so rushed to get washed and dressed and headed out with the camera. At first I was uplifted. Sunshine, not too cold, blue sky, fresh air, what could be better.

Then my mood dropped a little as I realised there wasn’t much to photograph.

Soon my mood changed to joy when I saw a lovely collection of dangly catkins as well as Celandines brightening the verges, and even a friendly Thrush. Spring really is springing!

The walk ended on a slightly less positive note when I realised I simply wouldn’t be able to manage to walk all the way down through the woods and back as I was in too much pain 😦 Sadly when walking on rough, uneven ground, I end up jarring my back over and over, making the pain shoot right through me like an electric shock. So I turned around and strolled slowly home to have a cup of tea and some pain killers. I’m going to have to face facts and try to keep to roads, pavements and wheelchair-friendly type paths from now on I think…

However, back in the garden at home I cheered up a bit to see fluffy Willow catkins, a couple of flies (not that exciting to most, but they represent the return of the insects to me!), and the Jackdaws starting to nest. I remembered that even if I can’t go for a long walk I can enjoy the nature in my garden. I’m hoping to buy some wildflowers and pond/bog plants from Naturescape this spring to put round the pond to really encourage the dragonflies and damselflies 🙂

Inspired by the Weekly Photo Challenge: State of Mind

weary

sharp-edged
storm brewing
you gnaw at me still
infinity draws my eye
a thousand glowing fairy lights
from now to evermore
each day the same
drape tinsel on my pain
wrap me in darkness
allow me this
hidden
I weep