Tuesday 28 January 2014
Hey guys! It's me with my weekly waffle/jibberjabber. Today I want to write about Fibromyalgia - the word fibromyalgia comes from Latin and Greek - Fibro meaning fibrous tissues, myos meaning muscles and algos meaning pain so you get the gist.
I was diagnosed with this wank-lord of an illness in June last year (although I had it for a few years prior to my official diagnosis)
So what is Fibromyalgia (or FM as I am going to refer it from now on and what causes it?) Well it's a central nervous system (brain, spinal chord and nerves) disorder that has three main symptoms - widespread pain, fatigue and trouble sleeping. Fibromyalgia also causes IBS, mood issues, migraines and loads of other horrible shit - the list is so long but in short it's painful, makes you feel exhausted and causes you to be a cranky old witch.
The NHS website has this explanation under the causes section:
One of the most likely causes of FM is a problem with the way pain messages are carried and received in your body.
The central nervous system transmits information all over your body through a network of specialised cells. In people with FM, the way pain messages are processed is disturbed. This may explain why FM results in constant feelings of pain and extreme sensitivity to pain.
Another cause I am aware of is trauma to the body. So a bad injury can cause fibro and things like Lupus can be a cause too - lots of people with Lupus also have FM =0( or a very stressful event in your life. However, these are not fully understood so without full understanding of what causes this illness there can be no cure! Same goes for Lupus.
I find it hard to fully explain the true horrors of it as unless you've felt it, you could never truly comprehend the shitness. Fortunately, FM is not inflammatory or degenerative so unlike Lupus there are no serious complications or long-term damage. The only likely damage is to your quality of life. And maybe your positive outlook on life.
The worst part is the fatigue. It's not normal tiredness, it's sheer exhaustion - the kind that makes your vision blurry. You know when you're so exhausted you can't even think? It's that kind of feeling. Sometimes I'm so exhausted I want to cry and sometimes I do cry but then I feel even more tired. It's not fun.
The pain is the second worst bit. The pain can be mild to excruciating and even when 'mild' it's still very much there - nagging at you like a pissed off woman. I cannot remember a day where I haven't been in some kind of pain. When I say I'm having a good day what I actually mean is I'm not having a terrible day.
When the pain is excruciating it's like standing on a lego multiplied by 100 and all over your body, literally from head to toe. I've also heard the pain described as having battery acid running through your veins instead of blood. That's a pretty accurate description. When the pain is mild it's like the day after you've worked out at the gym and your muscles ache. So imagine that pain plus feeling generally unwell like when you have a virus and then you are almost on your way to imagining what living with FM is like.
Next up we have the sleeping issues. I suffer with night sweats most nights and when I don't, I feel extremely lucky. I wake up between 2-6 times a night shivering and covered in cold, manky, sweat. Yeah, that's a nice image isn't it? Anyway the other factor is that some people with FM have non-restorative sleep so we wake up un-refreshed (is that a word? Well, you know what I mean) we wake up like we've had about an hours kip. Apparently studies have shown we don't go into the REM sleep bit - the deep sleep part of the night. No wonder we are exhausted eh?
Luckily for me, FM also causes IBS so pretty much 2-3 times a week I have some kind of digestive system related issue but I won't go into that because no one wants to hear about that. I hope?!
The day I was diagnosed with FM was the day I handed in my notice and gave up my job. Lupus is bad enough and then my body decided I hadn't had enough and decided to beat me up further. I didn't handle it well and just thought 'fuck this' I need to get my life back and pushing myself too hard wasn't working. Even the doctor advised me to take some time out and learn to chill out so that's what I did.
Treating FM isn't easy as the pain comes from signals in your brain so painkillers don't really work as they treat acute pain symptoms rather than long-term, chronic pain coming from misguided brain signals. I was given a course of anti-depressants but I didn't take them as I'm not depressed and didn't really want to go down that route or take more tablets than I already do. I was also given muscle relaxants but they spaced me out and I could barely move or talk. Other options are gentle exercise (not always easy or doable) and I've heard acupuncture can be good but I've not tried it yet. So really we just have to live with it and try and get on with it. Again not always easy. I've recently been doing gentle exercise and taking extra vitamin D and I've found a slight improvement - my pain is less excruciating but sleeping is still a pain in the arse. I actually feel envious when I wake up for the fourth time and I can see Sami snoring away with a smile on his face. Grrrr! It's a lonely time is 4am. I don't like meeting up with 4am.
So there you have it, a brief explanation of what Fibro is and how it makes me feel. In a nut shell, fibromyalgia sucks and people that have it are awesome.