This is my personal experience of Fibromyalgia (FM). I cannot speak for anyone else as everyone will experience it differently – although obviously everyone who has it will share symptoms, the range and scope of FM’s symptoms mean that individual people experience it in very different ways.
And even within each individual person, the illness varies and fluctuates not only with the seasons, but with the weather, from week to week, day to day – even over the course of a single day.
How you are one day can depend on how much sleep you got – the night before…..or 3 nights ago. It can depend on how many ‘spoons’ you wake up with that morning please see The Spoon Theory It was written by a lady with lupus but applies equally to FM/ME/CFS etc.
So. All these variables.
When I am asked what it is I reply that it is a condition that affects all the muscles of the body.
I then ask them to imagine/remember having the flu but without all the snotty bits and sore throat. The way your body aches and feels leaden and heavy and you lack energy.
THAT – I tell them – is there all the time. That is the basic background of FM. Some days that leaden feeling is much worse – it feels as if gravity has decided to target you that day and make your body heavier to move around than anyone else.
Then I tell people to remember the feeling they get in their muscles after weight training or after doing a strenuous activity that has involved lifting something heavy. The burning pain. Most people can also relate to this.
This is due to tiny micro tears in the muscles – which is exactly what you want when you aim to build muscle in a gym because the body then builds new muscle fibres and so the muscle, and strength, increases. Lactic acid is a by-product of this process and, if memory serves me correctly, is largely responsible for that burning.
BUT – for people with FM our muscles produce those micro tears without extra weight or exertion. And we do not clear lactic acid as effectively as other people, so it builds up. So the burn stays. And it can be felt in all the major muscles at once if we’re unlucky.
Then I go on to explain the muscle spasms. And this is where most people’s understanding crashes to a halt. It’s not their fault, of course it’s not. And I do not blame them, or resent them in any way shape or form. Please understand that. My mum had FM for many, many years before my diagnosis – I saw her pain. I heard her describe it. But I really had absolutely no bloody clue until I experienced it for myself.
So I fully understand how on top of the flu and burning pain your brain might find it hard to comprehend muscle spasms……..like cramp……….that can last for weeks……..and weeks!!
But its true.
My shoulders are the worst affected. The muscles that run from the neck to the shoulder joint along the top of the shoulder. I once had a physiotherapist say to me ‘ yes, a lot of people hold tension there’ so I insisted they felt those muscles and their face was a picture. They were shocked. And their whole attitude towards me changed. At that point it had been 2 years since those muscles had been soft.
All I can say is, you get used it. But if anyone has the strength and stamina to massage them for you so that they loosen – you want to weep with relief.
The other muscles where I mostly get this are my bum and hips. I frequently sit on what feels like golf balls. Its not comfortable. At all.
My hips – well its straight across from one side to the other across the top of my bum. And it goes rock solid. It makes walking, bending, turning etc very difficult indeed. Although you do have to laugh when only one side is affected because it looks like your bum implants have dropped on one side!!
And when your tummy muscles are affected – well instant belly lift for us larger ladies cant be bad lol. You really do have to laugh!!!
And then there is the fatigue. Oh ……sleep!!! How I miss that regular sense of evening tiredness.
No, with FM we dont get to that level of sleep where the body repairs itself. And we, of all people need those blasted repairs!!!! So we are constantly in a state of sleep deprivation. We are constantly tired. But we can sleep for England some days. Some days we literally CANNOT keep our eyes open long enough to swallow the pills we just counted out into our hands or hit send on that short text we just typed. Or finish the sentence we were half way through.
But though we might sleep for 20/24 hours on those days – we still dont feel refreshed. Because we dont get to the right level of sleep.
Or we sleep in short chunks of 2-4 hours out of 12. So during the day we need another chunk of sleep. And coz everyone else had their 7-9 hrs or whatever, they dont understand why we need a good long nap.
Our bodies dont work properly anymore.
They baffle us as well as you, you know!!!!
But it isnt in the mind. Oh no. Recent months an actual pathology has been discovered. But I will save that for another post, as I think this one is long enough to be going on with.