Fibromyalgia is quite common now a days, up to 1 person in every 25 may be affected. 10 years ago there was a massive stigma about it and loads of people treated fibromyalgia patients as if they were in need of attention making up pains and aches. I was diagnosed back then18 years ago, when saying I had fibromyalgia out loud made me feel like if I was telling people I was crazy. I find now a days there is more understanding about it and more respect towards those suffering from it.
I find people with Fibromyalgia usually are more cautious about coming for treatments as they are scared of feeling pain when being touch and because they are scared of not being understood. I was there! So I will tell you more about me so you stop being scared if you think you need a helping hand.
What is Fibromyalgia? Fibromyalgia is a long-term (chronic) condition that can cause widespread pain and tenderness over much of the body. it is not known yet know exactly what causes fibromyalgia, but research suggests that there’s an interaction between physical, neurological and psychological factors. I will copy some parts of the Arthritis Research UK website cause I love they way they explain it. "The pain we feel is often affected by our emotions and moods – depression or anxiety can make the pain seem worse. At the same time, being in pain can lead to stress, worry or low mood.
Usually, people feel pain when part of the body is damaged (as in arthritis) or suffers a physical injury. The pain people with fibromyalgia feel is different because it's not directly caused by damage or injury to the area that's hurting. Instead there's a problem with the way the brain and nervous system process pain from that area. This doesn’t mean the pain is any less real, but because there’s no physical damage that can be healed there's no easy way to stop the pain. This is why fibromyalgia pain can be long-lasting (chronic). Research has shown that people with fibromyalgia are more sensitive to physical pressure. This means that what would be a relatively minor knock for most people could be extremely painful for someone with fibromyalgia. This increased sensitivity isn't fully understood but it’s thought that it could be related to changes in the way the nervous system processes pain. Some researchers have shown using special brain scans that these processes are altered in people with fibromyalgia."It's not just the pain, though, it's the fatigue and extremely tiredness, the headaches, the tummy problems, the brain fog...
So, what is living with Fibromyalgia like? Well I think every case is different, but in my case Fibromyalgia is like a ghost that is always watching me. For many many many years I had that label and anything I wanted to do, I asked myself if my "fibro" would allow me to. Which university to go to, whether I could go out with friend or not, what food I could eat, what job I could take, what time I was coming back home, where to go on holidays, if it was too hot or too cold to go out… For years I lived terrified of those flare-ups that conditioned my life in so many ways. In the last 5 years I didn't have as many flare-ups and my live started to become a bit more normal. Psychotherapy helped massively! After years and years of taking more than 15 tablets a day and seeing different doctors every 2-4 months I could stop the medication until I was taking only basic pain relief some days a week. I decided to believe I was misdiagnosed and that I really didn't have "fribro" at all. My ghost just took some distance but never really went away. It doesn't. I lost a job because of my Fibromyalgia 4 years ago, I needed to change jobs 2 years and a half ago because of it, I have avoided parties, festivals and other events because of it again. Every time someone asks if i want children I wonder if my body could even cope with that! It never really goes away!! Still you might do quite a normal life, which is good news for those struggling.
What do I find more challenging? Sleep! As soon as I missed a bit of sleep my body goes crazy! Everything aches, even loud noises or bright lights! I wake up in pain already if I don't have a healthy night sleep. Just sleeping in a different bed when I travel to Manchester for the course, of when my partner works night shifts, or having nightmares… all those normal things are challenging for me and also can cause anxiety or low mood… I remember recovering from my PTS was the most fearful time of my life. My sleeping was all over the place and lived on the edge every day on constant fear of losing control over my body as well. As the Arthritis Research UK website says "not surprisingly, a combination of pain, sleep disturbance and anxiety or depression can turn into a vicious circle."
What to do then? Well, it took me a few good years to understand my own disease and what were the main triggers. I know emotional distress is a major one for me and work very hard in my mental health and wellbeing.
For me, sleep is sacred, as flexible as I want to be I still need to go to bed around the same time in order to be happy and pain free the next day. I just don't go out at night, but make the best of the day and see friends regularly for teas and coffees.
I don't drink alcohol and avoid certain foods that make my IBS and headaches worse, but love food and treat myself to those things I like!
I stay active. Now this is a BIG one… If I go lazy the pain takes over, unused muscles just go into strike and all ends up in a physiological civil war. I walk, I keep myself busy and try to be out and about as much as I can. I do stretches every day and have my exercises which I tolerate well and make me feel refreshed and strong. Too little bad, too much bad. I did a gym session 2 days ago I ended up being sent into A&E by the GP yesterday!! You live always with that ghost… Always assessing, always in fear, always challenging and waiting to see what happens, always trying to win, but your ill body wins every time, you just need to listen to it and get to a compromise, with a smile.
Massage and physical therapy were a massive massive thing for me. And the main reason why I decided to become massage practitioner. Injuries take ages to heal if they do and you always feel old, but massage and appropriate rehab is a great help.
Living with a ghost is not easy, living in pain is hard, living in pain and in constant fear of worse pain is even harder.
Be kind to those struggling around you, let them sleep, take them out for a walk, treat them with a massage and a bubble bath and smile at them!
Do you have your own Fibro ghost? Well… don't be scared of trying, you might find massage actually helps you!