Last week I have read an interview with the lead singer of imagine dragons. In the interview he talks about his journey with chronic pain and how important it is for sufferers to talk about the struggles and insecurities surrounding pain because it helps others to feel less alone. He says “Everyone is struggling with something. If we’re all putting out a false narrative of perfection, the world seems a lot more lonely”

I try really hard to keep my blog as an honest place to express my experience of having a chronic illness and my journey through trying to become active again so I can pursue my old hobbies. One of the methods I use to keep myself from breaking and hitting rock bottom is positivity.  Which can often swamp the truth and it certainly changes my dialogue. 

Over the last few years I have tried really hard to understand my condition and what it does to my body and why I feel constant pain.

When someone hurts themselves signals from that injury travels to your brain and it tells you that you are hurt. In fibromyalgia the brain picks up signals to tell you that you’re hurt even when you are not. A gentle touch from my husband can feel like he’s cutting me. My pain signals are set to high and my body has no mechanism to turn it back to low. Doctors don’t know for certain why some people get fibromyalgia, but they are constantly discovering new things about what is going on. 

In simple terms fibromyalgia is a change in the way the central nervous system processes pain messages. The cause of this could be due to changes to chemicals in the nervous system.

For a long time doctors have seen a strong correlation between Fibromyalgia and physical stress or emotional (psychological) stress and if you have experience any kind of trauma as a child or adolescent you are more likely to develop fibromyalgia as an adult. The link between this and how the body responds to the pain is unclear, but there is many research thesis which indicate even premature birth changes the way our bodies adjust to pain. During stressful situations chemical changes take place inside the brain changing the way pain is perceived and controlled. If an adult has 4 or more adverse childhood experiences they are more likely to develop chronic pain conditions when they are adults. Statistics like this or this kind of association seems to be a leading factor into why some people try to hide their battle. During my childhood and adolescent years I encountered more than 4 adverse childhood experiences. I was also born prematurely. Statistically this puts me in a increased risk of several different things, one being chronic pain. At the time I was one of the lucky ones who received support to overcome some of these traumas. From that place of crushing pain I wanted to look forward and transform myself from a victim into a survivor. Someone to help others using my experiences and I was relentlessly given the support I needed to do this. There were times when I felt so very lonely, or I couldn’t tell people or articulate myself well. Not knowing where to get help or who from.

It comes as no surprise then that I’m here over 20 years later suffering with chronic pain. I fit nicely into a statistic.

So I hear you ask…What is the connection with stress and Fibromyagia.?

Research shows that people who suffer with fibromyalgia have low levels of serotonin, noradrenaline and dopamine in their brains. These chemicals are vital for regulating mood, behaviour, how our bodies respond to stressful situations and how the brain processes pain messages sent by the nerves. In addition to this they have discovered that there is an increase in the hormone cortisol, which is released with stress. A chemical called substance P found in the cerebrospinal fluid (CSF), which transmits pain impulses to the brain, is three times higher in people with the disease than in those who do not have the condition. This again is increased with stress. 

About 5 years ago 2 key events took place which could have had an impact on my nervous system. I had been recently treated for Lyme disease. A disease that sometimes leaves patients in long lasting chronic pain and fatigue. I had also had an operation which I found very traumatic. They conducted the operation under local anaesthetic and I could feel the knife as it cut into me. I found myself screaming and hysterical with the surgical team telling me that I shouldn’t be feeling anything. I then had 4 weeks during which I had to have my wound packed with gauze daily. A horrifying experience which could have acted as a trigger to increase my pain levels and I’ve been unable to turn them down from that point onwards.

What ever the cause my research has shown me that the pain I experience is real pain, but chemically controlled in my body. The pain is effectively my body telling lies, suggesting there is something physically wrong, which could get worse with physical activities. I had to try to change my hormone levels. I have had to certainly play my mind at its own games.

I knew that physical activities help to increase serotonin levels so that was my starting point. I would have to partake in physical activities even though this hurt so badly. Whilst walking I do all I can to draw my thoughts away from the pain and onto the environment and surroundings. I very quickly discovered how therapeutic I find it to be in the mountains. How important it was for my mental health to get out. The benefits started to far out way the pain. The euphoric feeling I’d get as I reached a summit floods my body with serotonin and inhibits the cortisol. After the walks and in my rest periods I really enjoy the process of writing up the positives of my walk. Moving my thoughts away from the crippling pain that flows through my spine, bones, joints and tendons. Sometimes I push my body too much and require more rest, but I know that my pain will improve. When specialists say that one of the important things for Fibromyagia patients is to move. They are right! It is so important to stay strong and get out of bed in the morning and do something in spite of pain. It’s so important to focus your minds on the good rather than the pain. Human beings spend their lives looking for connection. True connection comes from knowing each other’s battles. Sharing our stories and supporting each other through. There is no shame in suffering with chronic pain. It actually makes you stronger than you would believe. Share your story with someone. Connect with me on my blog or find a community in which you find the support you deserve. I don’t always find it easy to change my minds dialogue and this method doesn’t rid me of pain, but it makes it more tolerable and sharing makes it a million times less lonely.