We decided to take a closer look into a chronic health condition that affects so many: fibromyalgia and chronic pain. They are widely misunderstood and often misrepresented by the media. We've put together information to introduce you to the symptoms and difficulties of fibromyalgia. We've also been very grateful to have the opportunity to speak to sufferers and their loved ones to understand what they'd appreciate more information about and how we can help them.

Remy --> heart_th_rob
Caty --> catyloveswriting

What is fibromyalgia?

Fibromyalgia - sometimes known as fibro, fibromyalgia syndrome, FM or FMS - is a long term condition that causes all over body pain. It has no known cure - some people may tell you otherwise: that they know a cure or have been cured but I disagree. They are either lying to sell you something or had a different condition to fibromyalgia in the first place.

What symptoms does fibromyalgia cause?

Fibromyalgia causes over two hundred symptoms. The most common ones are sensitivity to pain and touch; chronic all-over pain (lasting more than three months); extreme fatigue from doing very little or nothing at all; muscle stiffness - especially in mornings; insomnia or difficulty sleeping, be it due to pain, anxiety or a disrupted body clock; problems with your memory, co-ordination or concentration - this is commonly known as 'fibro-fog'; frequent headaches and/or migraines; and IBS, a very common stomach condition causing flatulence, diarrhoea, constipation and similar symptoms. Every time a fibromyalgia sufferer gets a new symptom, I strongly recommend they check it out with their doctor. It's likely to be fibromyalgia, but it's good to be on the safe side!

What does the pain feel like?

Fibromyalgia's widespread pain varies for every sufferer. I have seen fibromyalgia sufferers in wheelchairs but I have also seen fibromyalgia sufferers who can live a 'normal' life. The pain may tend to be worse in a particular area, a specific limb perhaps or your head and neck. To some of us, the pain may be a dull ache or a burning sensation. To others, it may be a sharp, stabbing or shooting pain. Some days are difficult. On those days, it's like an electric drill, drilling into your bones. If it's a better day, it can be more like a dull ache. Days also include numbness and tingling, pins and needles, stabbing pains, shooting pains, joint pains, muscle pains, and even your skin begins to hurt.

What affects the symptoms of fibromyalgia?

Fibromyalgia sufferers have good periods and bad periods - we like to call the worst ones 'flare-ups'. These flare-ups tend to be triggered by things like how much stress we are going through, what the weather or temperature around us is like and physically active we are.

How is fibromyalgia diagnosed?

Just like treatment, there is no clear way to diagnose fibromyalgia. Fibromyalgia may mimic other conditions so it is likely you will be examined and sent for blood tests and/or scans.

The most widely used criteria for diagnosis are:

You either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas.Your symptoms have stayed at a similar level for at least three months.No other reason for your symptoms has been found.

How is fibromyalgia treated?

As I mentioned, there is no actual cure for fibromyalgia. It is a case of managing it and adjusting towards your condition over time. Common methods of coping seem to be:

Medicines: every sufferer will react differently to medication so their reaction will be unique. Doctors often use antidepressants such as Amitriptyline or Duloxetine to treat neuropathic pain. Some of us may use opioids, muscle relaxants or sedatives. Sometimes, epilepsy medication - such as gabapentin or pregabalin - may be used and has proven helpful for some of us.Fibromyalgia may also trigger anxiety and depression in many sufferers so lots of us find talking therapies help us: this could be through cognitive behavioral therapy or simply speaking to a psychologist.All of us change our lifestyle because of fibromyalgia. We may begin to integrate more exercise or lighten our workload. Because of our sensitivity to everything, it is likely we will change our diet, too. Many of us are helped by breathing exercises, mindfulness or gentle yoga. It's good for us to relax and pace ourselves so we don't burn out before the day is over.

It may help you to be seen by specialists like rheumatologists, physiotherapists or neurologists for you to get the best care.

What causes fibromyalgia?

No one really knows what causes fibromyalgia - hence why there is no treatment - but there have been some accurate guesses made over the years.

It's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord, and nerves) processes pain messages carried around the body. These chemicals include serotonin, noradrenaline and dopamine and can cause all manner of weird symptoms - the very same ones seen in fibromyalgia sufferers. Linking to this, it is thought that it may be caused by a misfire in the brain. This leads to pain messages being sent to our brain despite there being no injury or trauma. Pain is usually used to warn us that something is wrong but the pain fibromyalgia sufferers experience has no 'cause'.

It's also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.

In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:

An injury or infection
Giving birth
Having an operation
The breakdown of a relationship
The death of a loved one

What do you mean there are associated conditions?

Fibromyalgia also has many associated conditions. It seems that fibromyalgia sufferers often have a condition list as long as their arm! I suspect that this is because everything in the body is linked and one thing often leads to another. Some of these conditions include chronic fatigue syndrome, rheumatoid arthritis, migraines, anxiety, depression, irritable bowel syndrome, endometriosis, and lupus as well as many many more.

Who does fibromyalgia affect?

Fibromyalgia can affect anyone of any age: it doesn't discriminate. It is thought that it affects seven times more women than men. Typically, the condition seems to appear when the sufferer is between the ages of thirty and fifty but it can also affect very young people, like me, and the elderly, too. We do not yet know how many people are affected by fibromyalgia but it is thought to be the most common chronic pain condition.

To anyone questioning if fibromyalgia is a real illness: you are wrong. People suffer everyday because of it and we don't need people like you questioning us.

What helps and hurts with your mental and physical health?

Remy: This is a difficult question since these things seem to always be evolving.

Things that make my life harder seem to spring to mind first: the weather is a real pain, as well as my environment in general. My energy will deteriorate as the weather gets colder and by winter, I always feel tired and drowsy. While we're here, I'm not very good with bright lights (see hospital appointments!) and speaking to lots of people at once. It's like everything they're saying is spinning around and gets all scrambled up: sometimes my words will come out in the wrong order lmao.

But, you know, I'm not here to be depressive. Lots of things help, too. I tend to focus on conserving my energy so I don't burn out. Things like painting, gardening, and writing are useful when it comes to distraction from the pain. When I'm really struggling, I'll lie down in a dark room (especially if I have a migraine).

Caty: What helps is my tens units and I have to wear it all time. My cane and wheelchair help. Resting and laying down really helps. Writing, crocheting, singing, and reading all help.

What hurts is even it's hot outside because it makes me swell. When it's raining, it makes my back hurt worse. Exercise, doing chores, going to doctor appointments, all hurt me so much. I am in constant chronic pain so even if I lay down all day I will still be in unbearable pain. I can't work which is very frustrating. I am still in college and go to college on campus but that also hurts me.

I do my best just to try to get through each and every day

How do you handle family/friendships with fibromyalgia?

Remy: Wow, relationships and fibromyalgia are an absolute nightmare. When I was first diagnosed, it affected the majority of my friendships and I lost many of the people that I thought cared about me. It was a really hard time because I had few friends to lean on.

I feel like friendships are just something that come with time when you're chronically ill. I've become really "picky" with friends and the people in my inner circle: I don't want people around me that don't understand or try to kick me when I'm down. I need people I can lean on when I hurt and people that understand when I need to cancel at the last minute.

Sometimes you just have to be brutally honest - with yourself and others. You have to weigh up how much value people add to your life in comparison to how much (sometimes literal!) pain they cause. It is possible to find people that understand you and your condition, it just takes a little longer.

What does a typical day with chronic illness look like for you?

Remy: Uh, well all my days are a hot mess aha because sometimes I'm at college and some days I'm not. It really depends on so much but, like, I guess I can talk about the things that happen most days.

Getting up is probably the hardest part of my day, every day, without fail. I don't want to sound pitiful but, well, it really hurts to get up aha. Like, I'm fine once I'm out of bed and awake but it really hurts, especially on the colder mornings. Some mornings I have to get up (what I consider to be) relatively early and other mornings I can lie in a bit, which is just as painful tbh. But either way, I try to eat something when I get up: I would tell you that I cook in the mornings but that would be a lie aha. 

I basically try to do the bare minimum of things that need doing before about 11 am or midday. This means that I try to schedule any meetings or social gatherings I have for in the afternoon. I also try to go out each day (regardless of if I have college or not) and I usually do that in the evening because I see more interesting people on my walk at that time lmao. 

Sometimes I see my partner(s) :)))))) Seeing them honestly really helps my spirit and it's nice to have something to look forward to. However, it's still a little difficult sometimes: I know I'm not the best at vocalising my struggles and it's especially hard to explain how chronic pain is difficult to an "everyday" ache or pain, or being tired after a night out. Part of me worries that it might create a divide between us, or that one day I'll blow up about the fact that they can never fully understand. I've been trying to combat this by sending them resources and trying to find my voice when I feel like things are difficult but obviously, there's only so much I can do with limited energy lmao (the irony doesn't escape me, don't worry).

College is a whole other can of worms. Pretty much no one knows my body isn't fully functioning, or if they do, they don't know to what extent. The frequent use of ableist slurs like "cripple" makes me really uncomfortable - it doesn't offend me personally but I just feel really uncomfy about it. I notice a lot of, like, able-bodied people use it for anyone having time off college (I can't speculate if the people they're talking about are able-bodied, etc or not, nor do I want to) and I just wish they wouldn't. It's really not hard to take one word out of your vocabulary. Maybe they wouldn't use that word if they knew that I, myself, was invisibly disabled but does that really make it any better?

Anyway, I wanted to add that having fibromyalgia doesn't make me any less punk lmao - cripple punk exists for a reason :) So keep fighting the system for better media visibility, better training for doctors, and keep spreading information!!