Reality of chronic pain and fatigue

I have 3 monthly blood tests and last week my blood tests all came back bad. Oh no, the stuff I’m personally in control of is actually making me smile. Hello yes, I’ll take nicely shaped red blood cells holding tightly to haem as a very very very VERY good thing. I couldn’t work our why I’m still so exhausted though until I saw my CRP had leapt to 9 along with a leap in white blood cells. So that’s an infection.

Problem is?

I develop walking pneumonia so often that I can’t tell when it happens.

And it’s happened a number of times.

The same is true for new pain.

And I have to accept that actually, we’re not on top of my pain.

My RA didn’t protect me from Fibro, and neither have protected me from Carpel Tunnel Syndrome.

RA is “known” to not affect the spine- usually blood markers and expression of erosion differentiates between RA and AS.


It doesn’t protect me from other forms of erosion.

And I have a little compression in my lower spine.

Right where I experience pain that doesn’t fit my RA or fibro experience.

It has left me in tears, and I didn’t realise I have held back on saying my pain interferes for most of every day.

It’s extremely hard to bring up pain you think is unrelated because it’s such a short precious time you get with your team that you don’t want to waste their time. We *know* how hard our teams work not just for us but all patients.

Crying from pain is not that common for me considering, but my back pain got me there. It feels like my vertebra have been filed sharp and so those edges are pressing into surrounding tissue.

So I have to summon the courage.

It’s scary.

It really is.

But the extreme numbness in my entire legs I get from the same part of my spine means I really have to ask for help.

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