Fibromyalgia - What It's Like Living With It

Fibromyalgia - What it's like for me living with it

Living with Fibromyalgia is different for every sufferer. Each and every day I have pain and that is true throughout the day. The amount of pain fluctuates, but I'm never without it. Whether it's my neck or hands, my shoulders or back and whether I'm active or sitting still - something hurts. Sharing stories and experiences can help us all, so here's a little bit of mine.

What is Fibromyalgia?

One definition of Fibromyalgia is:

a rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localized tenderness at specific points on the body.

What This Looks Like for Me

And this definition holds for me. While it feels like my whole body hurts, in actuality, it's the result of specific areas that cause the surrounding tissue to be tender. While I have done a separate symptoms of Fibromyalgia post, I'll summarise the top issues I deal with here. So the key areas that hurt for me are:

Hand and Finger Pain

Much of human activity involves hands; eating, washing, embracing, expressing emotion and typing (or tapping). Yet one of the worst areas of my chronic condition is hand pain. I have some coping mechanisms and some days are alright with managing this aspect of my Fibromyalgia.
Wrist and hand pain with Fibromyalgia - 8 Tips to Help You

Neck and Shoulder Pain

This is by far the most persistent and intrusive of my Fibro symptoms. From waking up to going to sleep my neck and shoulders really hurt. It's true whether I'm physically active or not and sometimes my meds help with this, but not always. I'm grateful for my medication as that's probably the only thing stopping me getting persistent tension headaches.

It's all I can do to try rest, stay warm and occasionally use deep heat cream to try and manage the pain.

Brain Fog

While it's also known as Fibro Fog, the term "brain fog" means the same thing. Brain fog is not unique to Fibromyalgia by any means, but it is a common symptom. This is like a permanent "wooliness" inside my head that makes thinking difficult. It especially hinders spoken interactions with people, which is hard enough as an introvert as it is!

Being Diagnosed with Fibromyalgia

I was finally diagnosed with Fibromyalgia when I was in my early twenties, after suffering with, what was then, predominantly, head and neck pain, since I was thirteen.

I was told that it is usually diagnosed by eliminating most/all other possible conditions. I guess this is why it took about ten years to get a helpful diagnosis. I had tried acupuncture, massage, chiropractic, osteopathy, homeopathy and goodness knows what else, in trying to manage it. But the plain fact was: nothing worked. And if anything the condition was worsening.

So when I finally got diagnosed, despite not being a fan of 'labels', it was a relief to get an explanation.

What It Is Like Living with Fibromyalgia Now

Now, every day I have some level of pain or other. The 'localised' description isn't far wrong - though it is still predominantly in my neck and shoulders, I also get pain in my face from time-to-time and my the joint where my collarbones join my shoulders often really hurts.

I have also had to battle with really bad Fibro Fog - a lack of clarity in thought processes, chronic fatigue (coupled with an inability to sleep well). And over the last few years I have had an increase in hand pain, which sucks when I work - and play - on computers. And my shoulder pain can be so bad, trying to make me relax would be as useful as massaging a droid!

Since originally drafting this page, I have had to give up a 'normal job' completely.

The Upsides

But I have fantastic support from my other half, a few folks from Church and the friendship I have found via the Twitter community. This means I can recommend trying the following hashtags to find others fighting similar battles:

  • #SpoonieChat
  • #SpoonieProblems
  • #ChronicLife

There are others, but that's a start. Going forward I will add Fibro-related blog posts to this site. But I won't put myself under pressure to do so as that causes stress, which causes pain, so... yeah.

If you want to find out about specific components of Fibro, then the full post list can be found here or see the most recent ones below.

May the Spoons Be Ever In Your Favour.

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