So, for those of you who don’t know, fibromyalgia is a painful condition that causes constant bodily pain. It’s basically where the signals in your body are bit messed up and tell your brain that something hurts when there is actually nothing wrong with them. There is a lot of research going into this syndrome as doctors still have no idea why this happens or how to fix it. it was tricky getting diagnosed because its a diagnosis via elimination, which means they have to check everything else that it could be, before coming to fibromyalgia as a conclusion. I was struggling for some years, unaware that this condition even existed before my psychotherapist recognised the symptoms and suggested I speak to a doctor. I was sent to the rheumatology hospital in bath where I was finally diagnosed on the spot. If you think you may have fibromyalgia and are concerned about how to get a diagnosis or what the appointments entail, I’ll be writing about my appointment in more detail later on entitled “rheumatology appointment”.
For now though, I want to explain how this condition affects my life because it certainly isn’t an easy one to get on with. Similar to the way depression works where you feel sad for no reason, fibromyalgia makes you feel intense pain even though there is no injury. My personal experience is of pain mainly in my back, legs and stomach area, though some days it can be anywhere. The only way I can really describe the pain is searing, a horrible burning ache that just won’t go away. It’s always there, not a single minute goes by that I don’t feel pain and on top of the regular pain, I get other, short, sharp bursts of pain throughout my body. These bursts can come regardless of what I am doing and often feel like stabbing pains in very distinct places like the middle of my forearm, my ear or a single finger or toe. the pain is sometimes so precise I can stare at the exact spot it hurts and easily point it out, which is very different to the usual pain which seemed to be spread over a larger area.
Anything and everything can make this worse for me, climbing the stairs in my house is a daily struggle and I tend to stay on one level of my house for as long as possible so as not to unnecessarily make things worse. Although the pain is awful and pretty much untreatable, that’s not the worst part.
The worst part is the brain fog.
Not to blow my own trumpet but i had always been pretty proud of my memory, of the information I could hold onto and put to use later. But recently, I can barely remember the names of family members. I forget conversations I’ve had and even when reminded of things I genuinely have no recollection of first being told. i find things in my bedroom and I think “I’ve never seen this before” only to be told by my family that I’ve had it for years. This forgetfulness upsets me far more than my inability to walk for long periods.
Often people suffering with fibromyalgia feel depressed and worthless, for me, I already felt that way before, but for many it comes as a shock. i have friends who after their diagnosis have fallen into themselves, often considering suicide as they feel they are now a useless human being.
Well, I have a story for you about a man who has inspired me to keep going.
This man’s name is Paul and for obvious reasons I won’t give you his full name. But anyway, I’ve known Paul and his family for some time now, he has a lovely wife and two awesome kids who I adore. A few years ago, he too was diagnosed with fibromyalgia and I have seen first-hand the pain and trouble it causes him on a daily basis. The symptoms hit him hard, he became forgetful, and he went from feeling as though he could reading his wife’s mind, to feeling like he barely knew her. That’s what the brain fog does, it doesn’t just make you forgetful, it takes away your ability to understand others the way you used to, making you more prone to insulting people accidentally.
Now, Paul doesn’t work, similar to lots of people with fibromyalgia, so needless to say, his family is not well off. They live in a very old house which is currently falling apart and in desperate need of renovations. However as mentioned before, they don’t have a lot of money, the kids are high school age and his wife works. So what does he do? Well, recently, he has re-tiled the roof, with the help of friends and family an began a loft conversion. now, the average person, has no idea how to go about a loft conversion, I know I would have no clue, yet Paul, with no previous experience, with intense body pain, exhaustion and total feelings of worthlessness, fights every day to get as much done as possible.
If that’s not strength, I don’t know what is.
When I was first diagnosed, I went round to see Paul and his family, and I asked him what helped and what made his condition worse. He told me, and I stick by this also, that it’s kind of a guessing game. Not exactly helpful advice I know but it’s true. Some things will work for helping one person cope, but they may have no effect, or may even worsen symptoms in another person. Paul told me that trying different diets is a good idea, especially Dairy free or gluten free ones, not necessarily to stick to, but just to see if they ease symptoms.
Another piece of advice he gave was to know your own limits, which is good advice for me. Even before my diagnosis and before things became more difficult, I was pretty bad at judging when I was pushing myself too far. Also, being a woman in her early twenties, means I feel like I should be able to go out hiking or dancing without trouble. Realising when you need to stop or slow down is essential if you want to learn how to live with fibromyalgia.
It’s true that this condition is not an easy one to live with, but it is something that with time and training, you can begin to cope.