Stories

Living with fibromyalgia, POTS and dysautonomia

Knowledge is confidence. When I was first finding my way through these conditions, understanding them was what gave me back a sense of footing.

I'm writing this as someone who lives with these conditions, and as someone whose whole working life was built on educating and training others. When my health changed, my instinct was the same one I'd always had: I needed to understand what was happening to me. I was fortunate that I had the tools to research and the background to make sense of what I found. I know that's not the case for everyone.

So these are my factual pages. Plain, warm explanations of what these conditions are, written for the person who has just been handed a word they've never heard before and feels a little lost. If that's you, take a breath. You're in a good place to start.

Fibromyalgia

What it is

Fibromyalgia is a long-term condition best known for widespread pain through the body, alongside deep fatigue and a kind of mental fog that many of us call "fibro fog." It's understood as a problem with the way the nervous system processes pain signals, the volume turned up, so to speak, so that the body feels pain more intensely and more widely than it otherwise would. People often call it an autoimmune condition, and while that's the easiest shorthand, it's more accurately grouped among chronic pain and nervous-system-related conditions.

Some of the more common symptoms

Widespread pain and tenderness through the body. Persistent fatigue, even after rest. Brain fog, forgetfulness, trouble concentrating. Unrefreshing or disturbed sleep. Heightened sensitivity to touch, light, sound or temperature. Headaches. Stiffness, particularly in the morning. Digestive troubles.

There are many, many more. Fibromyalgia has such a long list of possible symptoms that no page could name them all. You don't need to have every symptom to live with the condition. Two people with fibromyalgia can have quite different experiences of it.

What I've noticed in my own life

The brain fog and forgetfulness were the hardest for me to make peace with. I was once someone with an exceptional memory, and watching that change took a real adjustment. So much of how I live now, my routines and my structure, grew out of learning to work gently around that.

POTS

Postural Orthostatic Tachycardia Syndrome

POTS is a condition affecting the autonomic nervous system, the part of the body that quietly runs everything we don't think about, like heart rate, blood pressure, digestion and temperature. In POTS, the heart rate rises sharply when a person stands up, and the body struggles to regulate itself the way it should when changing position. The full name, Postural Orthostatic Tachycardia Syndrome, simply describes that: a racing heart on standing.

Some of the more common symptoms

A rapid heartbeat when standing up. Lightheadedness or dizziness. Fainting or near-fainting. Fatigue. Brain fog. Shakiness or feeling weak. Heart palpitations. Trouble tolerating heat or standing for long periods.

As with fibromyalgia, no two people experience POTS in quite the same way, and you don't need the full list to live with it.

Dysautonomia and comorbidity

The umbrella that ties it together

Dysautonomia is the broad term for any condition where the autonomic nervous system isn't working as it should. POTS is actually one form of dysautonomia, so it sits beneath that umbrella. Because the autonomic nervous system touches so much of the body, dysautonomia can show up in many different ways, and it explains why so many of these conditions seem to travel together.

What is a comorbidity?

A comorbidity simply means having more than one condition at the same time. It's a word you hear a lot in this world, because conditions like fibromyalgia, POTS and other forms of dysautonomia so often appear alongside one another. One rarely arrives alone. Understanding that was a quiet relief for me, because it helped the bigger picture make sense rather than feeling like a scattered list of unrelated problems.

Why sharing what helps us matters

Here is something I believe deeply. The more of us who live with these conditions and share what genuinely helps us, the more our health professionals learn, and the more they can pass on to the next person who walks through their door.

In my clinic years, I learned to truly listen to my clients, to absorb what they told me about their lives, and to hold onto it. So when someone else came along facing something similar, I had a little piece of wisdom to offer them, gathered from someone who'd walked it before. That habit of listening and passing on is one of the reasons this website exists.

So I'd gently encourage you: as you find what supports you, share it with your trusted practitioners, your GP, your specialists, your physiotherapist, your exercise physiologist, your occupational therapist. Bring your experience into the conversation. Not in place of their expertise, but alongside it. That's how the whole community grows wiser together.

You don't have to work it all out alone

If you've just been handed one of these words and you're frightened, I understand. Learning what you're dealing with is the first step toward feeling steady again. Knowledge really is confidence.

I gathered what I've learned and put it here so it might reach someone who needs a gentler starting point than I had. If that's you, I'm so glad you found your way here.

Understanding is where the footing begins.