I think I’ve had the condition – which causes pain all over the body – for much longer. It’s difficult to get a diagnosis of fibromyalgia, not only because the symptoms can be vague and very similar to other illnesses but because there’s no definitive test for it. Once diagnosed there is a sense of relief for finally knowing what is causing such draining symptoms, but sufferers may also feel disappointment since there are limited treatment options and no cure available. Fibromyalgia is a debilitating yet invisible illness and it can be frustrating that there is so little understanding about it. I find it exasperating to have to explain myself whenever I’m struggling. This is what I’d want people to know about fibromyalgia:
1. The primary symptoms are pain and fatigue Most people experience pain as the main feature of the condition,
but for me it’s fatigue. The pain can be anywhere and is felt as ‘tender points’, meaning that the slightest pressure on a particular area is experienced as pain. These points can be widespread across muscles or specific joints. The fatigue, to me, is like having a really heavy body, because every small movement feels difficult, like I’m walking through treacle. Some people describe the fatigue as similar to constantly having the flu.
2. The secondary symptoms are wide ranging They include nausea, constipation, diarrhoea, migraines, stiffness, joint swelling, anxiety, depression, urinary difficulties, insomnia or cognitive difficulties to name just a few. Some people will struggle with these symptoms daily, for others they will come and go. This can be really frustrating as some inexperienced (or old-school) GPs will put any new symptom down to the fibromyalgia without fully investigating whether there’s something else wrong.
3. I have good days and bad days One day,
it’s possible to get up and function fully throughout the day; the next, sitting up in bed can take all the energy I have. As sufferers develop management techniques, we get better at predicting the bad days but sometimes they come out of the blue. Please don’t assume, if you see us doing something one day, that we will be fully functioning and able the next day.
4. Just because I look don’t look in pain or fatigued doesn’t mean I’m not
Most people with fibromyalgia will choose to hide it often – I don’t want to be a moan bag all the time, but I have constant pain and a persistent desire to curl up in a ball on the floor and fall asleep. I do not give in to my symptoms or I’d never get anything done but I’d appreciate it if people could try to remember how much effort I have to put into the simple things in life – just getting showered and dressed exhausting. You can’t see the symptoms but that doesn’t mean I’m not suffering.
5. Please accept a ‘maybe’ when making arrangements My illness may mean that I need to cancel arrangements at short notice. I can plan to do something but when it comes to it I may just not have enough energy left. When I say ‘maybe’, I will do my best to turn up but if it’s unsafe for me to drive or I know I wouldn’t be able to function when I met with you, it’s important that I listen to my body and rest.
6. I need to manage my illness my way
Pacing is an important concept in fibromyalgia and some people will choose to do a small amount of exercise everyday as this is thought to help with the pain. Other people will be familiar with their boom-and-bust cycle and choose to ‘overdo it’ intentionally, but they will need to plan rest days. Some people will use medication as part of their tool kit, others won’t find it helpful and will use other methods. If I want to try hypnosis, acupuncture, extra vitamins or regular massages, that’s my business, not anyone else’s. Try not to judge someone who’s doing their best to manage an ever-changing and frustrating illness.
7. Sometimes I’ve had enough and I just want to moan
As I said in point five, we don’t want to be talking about it all the time but when things get too much, everyone needs a good moan. The physical symptoms are hard enough but battling a condition that may never be cured is also tough mentally. Friends and family may think they know the answer but this isn’t always gratefully received – most of us have researched our condition and tried various management ideas. When I moan, I do not expect solutions, I just want someone to listen and give me some sympathy, I will soon come out of it but the last thing I need is to be made to feel guilty about the rational feelings I’m having.
8. It can happen to anyone
I do not have fibromyalgia because I am a weak person or because I’ve made bad lifestyle choices. Although there are theories about the causes, it is unknown why some people develop it and others do not, so don’t attempt to pass judgement.
9. Everyone experiences fibromyalgia differently
Some people are able to work while managing their fibromyalgia, others cannot even imagine working, as it can be so debilitating. Everyone will have different symptoms that are more prominent than others and everyone will experience them to varying degrees. It’s important not to judge one person against another, saying things like ‘I know someone else with fibromyalgia, they’re fine so why can’t you get out of bed’ is very unhelpful.
10. More research is needed
So much is unknown about fibromyalgia. We need more research to find out what causes it in order to try and prevent it, and to look into better ways of managing the condition once it’s developed. It’s important to raise awareness as this will help raise money for the condition.