What Fibromyalgia means to me.

Fibromyalgia.  A word I had never heard until I was sat in the office of my GP, and she gave it as a diagnosis. When I asked what it was, she thought for a moment before telling me my best bet was to look it up on the internet.

Fibromyalgia is a complex condition that has hundreds of symptoms. There is no test for it as it is a diagnosis which is a process of elimination and ‘trigger point’ sensitivity. It can take years to reach a diagnosis and there are still doctors out there who don’t believe it is real. There is lots of debate over what causes Fibromyalgia, some theories suggest an auto-immune disease whilst others suggest a dysfunction of the central nervous system (CNS). Since going home and looking it up, I have been living with the diagnosed condition for three years.

All those little things that had been bothering me for years, that I had felt would be a waste of time going to see the doctor about suddenly started to fall into place.  The random pains, numbness, tingling, headaches, increasing fatigue, pain when walking… All symptoms of Fibromyalgia.

Blood tests would come back normal, showing no inflammation despite the types of pain I was describing; no abnormal blood count despite the fatigue I was feeling.  No anemia in sight.  My blood pressure and blood sugar have remained normal despite putting on an alarming amount of weight.  In fact, the only part of my blood tests that have ever come back abnormal have been the thyroid function tests.  This perplexes my doctors to this day.  They can’t tell me whether I suffer from Hypothyroidism, because the results are not definitive enough.

Despite being labelled a ‘non-progressive’ disease, I am finding that I don’t just have one set of symptoms that never change.  Heat sensitivity has become more of an issue in the past year – it used to be that if I got cold, I would feel very cold and find it hard to warm up.  I’ve considered that my ‘normal’ for as long as I can remember. More recently, I have been plagued with the other end of heat sensitivity too… if I am a little warm, I sweat.  And not a little.  The hair at the back of my neck can be wet within minutes.  When this happens there is nothing I can do other than strip down as much as I can whilst remaining decent and hope that there is a fan nearby that I can sit in front of. Even then I have to be careful, because if I stay in front of that fan for too long, I get too cold and have to layer up.  There are days when it’s all I can do to try and find a happy medium in the temperature game.

Chemical sensitivity is something else that I have begun to struggle with.  Cleaning products such as cream cleaner or bleach trigger severe headaches as do perfumes, air-fresheners, deodorant and shower gel.  It can be very difficult to avoid some of these things, and a Fibro related headache can incapacitate me for up to a week.

There are lots of other symptoms that I may discuss in future posts, such as the different types of pain I experience.

So, what does Fibromyalgia mean to me?

At the moment, it means an illness that is hard to define.  It is invisible unless you know me well.  It has many faces, some of which I am still learning about.  It means limits that I wish didn’t exist. I used to be able to walk the half a mile into town, now I can barely walk to the end of my road. It means learning to pace myself and learning to recognise when I’m doing too much.  It also means learning to deal with the guilt I associate with having to say no when I am asked to do things by friends and family.  It also means learning to ask for help, and learning not to be ashamed of not being able to do what I could do before.

Invisible doesn’t mean made up.