This is often the reaction when I tell people I have fibromyalgia. It amazes me that when you have it and research it, you find lots of people with the condition but not many people outside of the ‘fibro bubble’ understand or know about it. For example a few weeks ago I was discussing my condition on the phone and the person on the other end said, “What’s that? Is it your lungs?”
So here it is, the low down on what fibromyalgia is and how I was diagnosed…
What is fibromyalgia?
Fibromyalgia is a long term condition that is characterised mainly by widespread pain, but FMS sufferers can also experience a multitude of other symptoms. The main other symptoms include extreme fatigue, muscle stiffness, problems with sleep, fibro-fog (problems with mental processing, such as concentration and memory), headaches, IBS (irritable bowel syndrome), extreme sensitivity (hyperalgesia and or allodynia), dizziness and clumsiness, anxiety, depression and restless leg syndrome. Although this is not an extensive list, they are the most common symptoms.
It is difficult to get a diagnosis because there is currently not test that shows it up. A lot of sufferers will have had symptoms for a long time, maybe mild or maybe more severe and through process of elimination a diagnosis of fibromyalgia is reached. For some this can be years of doctors visits, being told it is all in your head and being sent away, but for others it can happen more quickly.
This is not the most detailed explanation, but it gives you an overview of the main symptoms. Everyone who suffers with FMS is different, they have different symptoms, different levels of pain and fatigue, different ways of coping and different stories. I can only write from my perspective and in my next post will outline how the condition affects me on a day to day basis.
Fibromyalgia and my diagnosis
Looking back now, I realise that my symptoms started way before I first ever really noticed them; starting whilst I was at university. I can see now how the occasional days of unexplained pain and the higher than normal levels of fatigue were just the beginning of my fibromyalgia journey. But, I first really noticed my symptoms in 2013, I was in my first year of teaching and I loved working in the Early Years Foundation Unit. During the spring term I was told that due to restructuring my job wasn’t going to exist in the September and that is when I had my first flare, according to the doctors it was brought on by stress. I was told about my job on the Wednesday and it wasn’t until the following Monday that my symptoms started to appear; severe pain down the right side, muscle stiffness and fatigue. By the Friday I was a little more concerned and after I finished work I went straight to my parents, I had started to suffer weakness in my right side and struggled to drive. I got an emergency appointment with a GP who arranged for me to be admitted to hospital immediately. They initially thought it was a clot on my lung or brain and carried out several tests before discharging me a couple of days later advising bed rest. I went home assuming it was viral and rested. Then the pain started spreading, I was dropping things, falling down the stairs and the fatigue was getting worse. I returned to the doctors who arranged for me to be admitted back to hospital, they kept me there for a day whilst conducting more tests and sent me away again. I had to have several weeks off whilst I built my strength back up and finally returned to work, the widespread pain was still there, the fatigue was slowly getting more prominent and the paracetamol not helping. I returned to the doctors in the summer, seeing a new GP, I explained my symptoms, explained that my sister had similar symptoms and that she had fibromyalgia and after testing the trigger points and looking at all the tests I had had done, concluded that I had indeed got fibromyalgia. She then prescribed me two medications and sent me on my way.
I have spent the following years teaching myself about the condition, through research,support groups and books, as I received little support from my original GP. Over the last three years I have seen many doctors and some have been more helpful than others, but I still feel let down. My sister and mum have seen specialists and been given help in managing the condition and I’ve been left out in the cold.