Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.
The name fibromyalgia comes from three Latin words:
- ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
- ‘my’ meaning muscles
- ‘algia’ meaning pain
However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:
- difficulty sleeping
- irritable bowel syndrome (IBS)
- muscle stiffness
I was diagnosed with fibromyalgia in 2006. Within a couple of years, I had gone from an active girl, going for eight-mile walks every day and swimming regularly, to someone who spent days in bed, taking a cocktail of painkillers and swapping my amazing shoe collection for a series of comfortable slip-ons and trainers. To someone who often couldn’t fasten their own bra or manage to sleep.
The problem with a fibromyalgia diagnosis is that, although it’s in the British Medical Journal and accepted as a viable diagnosis by medical professionals (after ruling out more serious conditions like MS), many people still refuse to accept that somebody can experience intense pain without an obvious, visible, medical cause. In people with fibro, the nerves overreact to pain and can’t distinguish between a small touch and a smack in the face, meaning that sometimes even placing your hand on their shoulder can cause the person intense pain, akin to the skin burning and muscles tearing.
Fibromyalgia is usually diagnosed by testing the patient for certain ‘pressure points’ around the body. These points are extremely tender, and touching them lightly causes pain in that area. However, the pain of fibro isn’t limited to those specific points; it’s just a diagnostic tool rheumatologists use.
My own diagnosis consisted of a long talk with Dr. B – the consultant who also diagnosed me with osteoarthritis a couple of months ago – about my mental health problems. At the time, I didn’t see how it was relevant; my pain was physical. I now realise that he was trying to rule out pains caused by depression; a common symptom.
Dr. B poked me in the back and thighs with his fingers, asking if it hurt. Every time it did I squeaked and shot across the room. We spoke about my history of gastric problems and the tiredness I’d been unable to shake since my teens. The lack of sleep and never feeling awake. The regular blinding headaches and the pains in my jaw and neck which sometimes hurt more than I could cope with. Written down, it doesn’t seem so bad; everyone gets tired, everyone has headaches. Everyone goes through periods of bad sleep. Strange pains with no explanation probably affect everyone at times. However, when you’re always tired, always in pain, always running to the toilet and laying wide awake for days at a time… fibromyalgia is relentless. You can improve at times, but it comes back. Fibro-flares can last a day or a year, and the gaps in between aren’t exactly a relief; the pain just lessens a bit. Everything’s still hurting.
Tiredness as a symptom is often looked down on by the layperson. It sounds quite flimsy; an easy excuse for being lazy. However, I have been tired for years. Unless you have a chronic condition which affects your sleep, you just can’t understand how constant fatigue can destroy a person. Suicide isn’t uncommon.
Society as a whole seems to view chronic pain with suspicion. Even in cases of serious – even terminal – conditions like MS. Pain doesn’t seem to be a good enough excuse for claiming disability or having a carer. Unless you’re in a wheelchair, you may as well be making everything up.
Having your symptoms played down (“it can’t be that bad”) or denied entirely (“I heard from my friend’s uncle’s cousin that fibromyalgia/arthritis can be cured by a juice diet”) wears you down. When you live with chronic pain of any sort, you learn very quickly what you can and can’t do, and what will or won’t help. You become an expert on the subject, and while advice may be well-meant, it really doesn’t help. Telling somebody they’ll ‘get over it’ is useless when most of these conditions are life-long or can last for years.
In my comments on my post about privacy I mentioned the attitudes of members of a forum I used to post on. I never hid the fact that I was classed as unfit to work; disabled, in the medical sense. I was open and honest about the benefits I received – I’m on DLA and incapacity – although I rarely mentioned fibromyalgia unless somebody else brought it up; I didn’t want to be defined by any conditions I have. I’d already had abuse thown at me when I admitted to suffering from depression, and I knew I couldn’t take insults and accusations from strangers when I was already struggling to accept my position in society.
When you can’t work, you feel useless. The issue of employment and benefits is a hot topic in the UK right now, and most newspapers seem to revel in accusing everyone without a job of being a scrounger. The unemployed and the unemployable are lumped together with no leeway for disability, no allowance for redundancy or personal issues. I try to avoid the news precisely because of this attitude, but it’s difficult to miss when huge headlines scream out from paper stands with a photograph of a man with a supposed bad back who’s been living a secret life as a judo instructor while claiming disability benefits. These cheats are in the minority, but society sees these photos and assumes everyone with a bad back is jumping out of aeroplanes and partying.
I’d like to credit humankind with more intelligence and free-thought, but I can’t help wondering if the majority looks at individuals like me and judges me for not having a career. When so much of what a person does is related to what they do for a living, it can be hard admitting that not only do you not have a job, but you perhaps never will. Taxi drivers often assume I’ve been at work or am on a day off; I used to try to explain, but the majority stopped speaking when they learned I didn’t have a job of my own. Now, I just say “yeah, long day” and leave it at that, or say I’m jobseeking. I shouldn’t have to explain my situation to total strangers, yet it happens all too often. I’ve stopped chatting to others in the street because they inevitably ask what I ‘do’; somehow, I don’t think they’d appreciate me replying with, “lie in bed feeling sorry for myself, mostly”.
For the past year, I’ve been pretty much bed-bound during the week. Since starting on Lyrica, I’ve been able to sit up and move around the house more easily, but it’s sometimes still difficult to make it down the stairs when my legs feel like they’ve fallen off. Pins and needles is common; my right side often goes totally numb. You just can’t walk on a dead leg, as much as you want to.
My hands still tremble, although they’ve improved slightly due to medication. Dropping cups and bottles of milk is common, as is walking into stationary objects when my legs decide to go the opposite way without permission. My knees often lock while I’m walking down stairs, and I’ve fallen over more times than I’d care to remember over the past few months. I’ve damaged my elbow, twisted my ankles, banged my head and bent my fingers back. I pull doors into my own face because I can’t judge distance due to being distracted by the pain.
I can’t cross roads without help; I rarely go out on my own now because I can’t cope with struggling across a busy street into the path of incoming traffic. I can’t know if my knees are going to give in half way across. I find that using a walking stick (black, with coloured flowers) helps with crowds – people tend to move if you’re obviously struggling – but I still get jostled and pushed. Maybe it’s my age; you don’t see many 20-something’s walking around with a stick in this town. Especially not ones with 36 piercings and visible tattoos and bright hair. I occasionally wonder if I’m being assessed by strangers because I obviously cope with the pain of piercing needles but not with burning sensations running through my arms and shoulders.
I don’t cope. It hurts like hell, but it’s a pain I can control. When your body betrays you, you need to hold onto something you have power over. When the needle goes into my body, I choose where and when. I choose how much pain I’m likely to feel. Fibromyalgia and arthritis don’t give you that choice.
There seems to be an assumption that life on benefits is taking the easy option. I frequently hear tales of 40″ HD tv’s and cars galore; where do they think that amount of money comes from? From DLA and incapacity, I’m ‘earning’ close to minimum wage. My television (20″, not HD) was a gift from my parents. My iPod was a Christmas present. S bought my PS3. I don’t have a car – I can’t drive, what with being disabled – and holidays are rare. The only time I’ve been abroad is to Germany on a school trip.
I lived with my mother for so long after splitting with J because I couldn’t afford to rent on my own; with S, we can split the cost. I still pay my mother rent; it’s not free.
I will never own a house unless I inherit one or come into money through the lottery. I have no credit rating, and will never be allowed a mortgage as long as I’m ill. I don’t get handouts; I get help towards extra costs my disability causes. Costs such as handfuls of medication – I don’t get free prescriptions or a reduction – and taxis because I can’t always walk to the bus stop. Aids like walking sticks and adapted kitchen equipment so I can open jars and unscrew lids. Clothes without fiddly buttons and shoes with extra support. Costs for travel to hospital appointments; I often have to get a taxi 20 miles or more first thing in the morning to see specialists, which can cost over £50 there and back.
Although the people closest to me show understanding, strangers are often callous and cutting with their remarks.
“You’re what’s wrong with society” – like I asked for this.
“You go to the pub, so you can work” – On Fridays, I meet S at a pub near the hospital. He likes to drink a few pints at the end of the week after working in the lab for very little money or respect. Before Lyrica, I’d have a couple of pints with him; is that so wrong? I’ve spent the week being in pain, do I not deserve a chill-out with my boyfriend? Are the disabled not allowed to drink? I sit down, I don’t dance or do gymnastics.
“Pothead/druggie/addict” – I understand that some people are very anti-drugs, and have a preconception of those who take them. Those who smoke weed are seen as lazy drop-outs. Yet those who judge often have no problem with legal drugs such as paracetamol or codeine. Cannabis is a proven painkiller; the studies have been done, and I’m living proof that smoking a joint can calm muscle spasms and make everyday tasks easier. I’ve had addictions to painkillers – codeine, tramadol and morphine – and I feel far more stable and healthy for swapping those for cannabis. Codeine damaged my liver, tramadol damaged my mind, and morphine destroyed my whole life. Cannabis has brought me out of myself, soothed pain and calmed my panic attacks; so why is it so bad that I choose to smoke it? It’s my choice, and I could easily push my liver too far and die if I took all the painkillers I’d need to dull the pain. Instead, I just continue damaging my lungs - I smoke anyway – and accept it as a side-effect of treatment. All medications have negative side-effects. I was taking 40 co-codamol pills a day; how can that be better just because it’s legal?
“You look fine” – well, thanks I suppose. That’s because I cover my face in trowelled-on foundation and bronzing powder to hide the grey pallor of my skin. I make myself look as presentable as possible because what 20-something wants to look like a stooped lump of sweaty, pained lard? I style my hair because it looks nice when I do. There seems to be a belief that the disabled can’t possibly look healthy. We fake it, very well.
Chronic pain isn’t fun and it doesn’t make you rich. It’s not an excuse to avoid work. I would kill to have a job. As a child, I had dreams of growing up, having a career and being independent. I wanted to be a paleontologist or a secretary and day-dreamed about my office and taking money home. Life holds no guarantees though and, through no fault of my own, I ended up with arthritis and fibro, along with mental illness. I wouldn’t expect to ace a job interview anyway; what business will allow weeks off with no notice? Who would help me get out of chairs since I can’t stand for more than a few minutes? I’d need time off for tests and appointments, someone would have to help with lifting things. It’s just not practical and I’d cost the business money. I’d be a liability.
Some people do abuse the welfare system. I’m not in denial of that. However, far more receive it for genuine reasons and without it life wouldn’t be worth living. Without it, there’d be no medications. No rent. No food. No clothes. No quality of life at all.
Some seem to think that’s what we deserve for daring to be unwell.