Fibromyalgia: Do You Know Who I Am?

The illness that almost no one has heard of, or really even cares about.

I've had fibromyalgia (fibro, for short) for about five years now, and I'm not gonna lie, it's a real bitch. The list of my body parts that it hasn't effected is substantially shorter than the list of parts it has. But to understand why it's such a bitch to have, you've got to understand the illness itself. 

Fibromyalgia is a Central Nervous System condition, so it can pretty much get its paws on all of you. One of its most prominent features is that it causes widespread, chronic pain, meaning the pain is long term. The unfortunate thing about fibromyalgia pain is that there's no injury, and there's not really a "source" of the pain either; you're basically being told by your nerves that you're in pain, even though there's no physical reason behind it. That means that a lot of the time, certain antidepressants are actually used to treat the pain, since they can interfere with the way your neurons process the pain signals. 

The fibro-fun doesn't end there though. Ohhh no.

See, as well as creating pain, it also makes you more sensitive to pain. You know how during a rugby game a player might break a bone and not even notice because of the adrenaline? Well on the other end of the spectrum, for someone with fibro, a hug or a hand squeeze can actually be agony. I'm lucky that this isn't usually the case for me, but it varies from person to person and even within one person themselves; one day they might get a playful punch on the arm and barely register it, on others sitting down too hard might make them want to cry. I repeat, it's a real bitch.

All sorts of different things can trigger a pain "flare" (when your pain levels rise significantly), and again, just because one thing makes me flare up, doesn't mean that it'll make your friends or family with fibro have one. The most common triggers are stress, tiredness, and coldness. Cold weather is my biggest trigger, so from early October to late March I'm basically in pain constantly. One of the best things to do if cold is triggering your pain is to try and keep yourself warm (duh), but if you've already been triggered by an icy wind, a nice hot bath, heat cream, or an electric heat pad can really soothe it. I even have these incredible microwavable heat pads that are shaped like sports joint supports for more localised pain.

Unfortunately, if tiredness is a big issue for you, it's pretty hard to remedy, especially if you have a crappy sleeping pattern. It's a vicious circle, because you get tired, the pain starts, and it keeps you awake, causing more pain, making it harder to sleep, and on and on until you cannot physically stay awake anymore. The trick is to get yourself into a bedtime routine; prepare your mind and body to sleep at a sensible time, before you reach tiredness. For me, some relaxing music and a good book works, but you've got to have an open mind and be willing to really try to find your own little thing. 

Stress is a similar principal; you get stressed out by an argument, the pain kicks in and it stresses you out more, and so the pain gets worse. Another vicious circle, but it's breakable. You have to find a way to keep yourself calm, and unfortunately I can't really give you much advice in this area because I'm awful at handling stress...but there are so many techniques out there for stress management, like mindfulness or meditation, that if you persevere, you'll find what works for you.

Fibromyalgia doesn't solely effect your pain and sensitivity, though. It also has a wide variety of different cognitive symptoms, the most noteworthy being what we fibro sufferers call "fibro fog".

Fibro fog; so called because it feels like there's a thick fog between you and whatever thought or word you're trying to articulate. I have this quite badly, regardless of weather or stress, but it is definitely worse if I'm tired. You can be in the middle of a sentence and suddenly you have absolutely no idea what the next word you were going to say was. Not too bad if it happens with someone who knows you have fibro, but if you're trying to buy a bus ticket or are in an important meeting, it can feel pretty embarrassing. Unfortunately there isn't really any treatment for it, so it's a case of coming to terms with the fact that sometimes the word you want is going to be just out of reach. It sucks, but once you've accepted that it's going to happen regardless of how much you hate it, it becomes less stressful to experience.

Sensory overload issues are also a pretty common problem for fibro sufferers. Not being able to take in what the person next to you is saying because you can also hear the voices of everyone else in the room, for example. It can happen with sights and smells, too, but to the best of my knowledge it's not as common as it is with sounds. People have thought I'm pretty rude because they've just told me something important, and I really did start out intending to listen and take it all in, but suddenly all I can hear is the old lady in the corner coughing and the toddler on the other side of the room crying, and before you know it they've finished their story and I heard about three words of it. I used to try to make excuses for this, but now I just explain the truth of the matter and most people are pretty understanding. If they're not, it's their problem, so they don't deserve me listening to their story anyway. Suck it, bitches.

Fibromyalgia comes with a variety of "sister conditions"; they're not caused by the fibro, but they're more common for people with fibromyalgia. Migraines, Irritable Bowel Syndrome, anxiety and depression are just a few.

I could go on listing symptoms and sister conditions all day long, but they aren't the point of this article. The point is that there are way more people experiencing this condition than you know, because it all comes down to one little word: invisible.

Fibromyalgia is what's known as an Invisible Illness, something that effects the person but that you can't see. Because of its lack of visibility, both literally and in the media, most people don't know what it is or really care about the way it impacts lives. It's also not terminal, so understandably not as much research is done on it compared to something life threatening, like cancer.

I 100% agree that cancer deserves more funding and resources than fibromyalgia, but fibromyalgia deserves more research than it currently gets. There are so few treatments available for it and its symptoms that a diagnosis can feel almost hopeless, like you've been given this unwelcome gift that you can't do anything about. I really want to highlight here that I definitely felt like this for almost a year after my diagnosis, but here I am, being that annoyingly optimistic and positive person, telling you that it's not as bad as it feels.

One of the things that could really help us fibro folk live with this in a little more comfort is a world that understands it a little better. If you know someone has arthritis, you don't question it if they need to sit down. If you know someone has dementia, you don't look confused and shame them for their poor memory. All we're asking for is that the people around us have a little more compassion when it comes to our symptoms, learn a little more about what can make our lives easier and more bearable.

If someone you care about, even a little bit, has been diagnosed with fibromyalgia, you need to take the time to understand the condition. Google is your friend on this one, because it's a complex condition that even they might not understand yet, but you making that small effort could both mean the world to them, and make their world happier.

Understand if they have to cancel meeting up for a drink because they're in agony. Walk a little slower for them without making a big deal of it. Choose a shop with lifts as well as stairs in case their legs are sore. Be patient if they're struggling to remember what you told them five minutes ago. But most importantly...treat them like a normal person. We're not breakable, we just have different needs than you.

We just want to live our lives normally, even if it is a different version of normal.

Read next: Reiki Healing
SR James
SR James

Conservative-hating feminist who writes about pretty much whatever pops into her head. Big fan of dead trees with tattoos. Twitter @SRJWriter

Now Reading
Fibromyalgia: Do You Know Who I Am?
Read Next
Reiki Healing