Saturday, 10 November 2018

Being Diagnosed With Fibromyalgia

Last week, I was diagnosed with fibromyalgia. It wasn't a shock, as it had come at the end of a lot of discussion with my doctor, and a lot of poking and prodding. I've had plenty of warning and time to gather my thoughts about it, but it didn't make finally hearing the 'official' diagnosis any less difficult. Lots of people don't know what fibromyalgia is, or what the process of diagnosis is, so I wanted to share my experience. 

if fibro thinks it's gonna stop me partying in giant heels, it's mistaken!
What is Fibromyalgia?
To put it simply, fibromyalgia is a chronic condition that includes widespread pain, fatigue, sensory sensitivity, cognitive issues known as 'brain fog', and digestive issues, among other symptoms. It's a poorly understood condition which needs far more research, and symptoms and severity vary widely not just between people, but within an individual. An activity that may be useful one day, may cause the same person a huge flare-up the next, making managing it rather difficult. 

My Experience
For me, my main problems are constantly feeling achey, extreme exhaustion, stiff and cracking joints, random sensitivity to even gentle touching, and IBS. Sometimes simply itching my arm can feel akin to being shot with a BB gun pellet, or typing can feel like my fingers are broken. I experience 'brain fog', getting words jumbled or not understanding what someone is saying despite my best efforts to listen, and having 'slow eyesight', which gets even worse when I'm particularly tired. Sometimes my limbs get weak, or tingly and numb, usually after exertion of some kind. I can have massive sensitivity to light and sound, and sometimes daylight or ambient sound can be piercing. I also have hair loss, ringing ears in the evening, random contact allergies to bizarre things (like a bracelet I've worn 15,000 times before, or my socks), and I bruise like a peach. Yep, it really sucks.

Getting diagnosed
To be diagnosed, a doctor must first rule out all possible other conditions, as fibromyalgia doesn't show up on tests. As I'd already been examined by a physiotherapist when my scoliosis was discovered, this wasn't deemed necessary to repeat. My GP checked my joints for swelling, and I had blood tests for a lot of things. Multiple tests for inflammation levels were conducted, along with checks of my vitamin levels, a full blood count, tests for things like coeliac disease, thyroid conditions, and liver function. This was done over a few sets of blood tests, so I became a human pin-cushion for a while! 
My GP then gave me a questionnaire of symptoms to fill out over a couple of weeks, which gave me a score that warranted a fibromyalgia diagnosis. Some things I hadn't realised were symptoms, like my ears ringing every night, or random allergies. Weirdly, I'd even taken my digestive issues for normal until I spoke to my GP and she explained how far from normal they were. 
Once I'd done the questionnaire, my GP poked and prodded and checked the 'pain trigger points' for extra sensitivity. She also checked my range of movement. My questionnaire score, and sensitivity in the 'trigger points', combined with the lack of issue in my blood results meant it was fibromyalgia. 
Another thing to note is that you no longer need to be examined by a rheumatologist to be diagnosed, but my GP sent a letter to a rheumatologist with the blood results, and findings from her examinations to be sure the rheumatologist was satisfied with a fibromyalgia diagnosis and didn't want to see me. 

My Thoughts
When I first got the official diagnosis, I was scared and heartbroken, and honestly, still am. It's going to take a while to process how I feel about it all, but being told you're going to feel unwell for the rest of your life is horrible. I realised there are lots of things I won't be able to do, or will be able to but will pay for later. I was fearful for my career options, and am accutely aware that my priorities and choices will have to change to keep me healthy and with a good quality of life. I have a long way to go in terms of acceptance and finding balance in my life, because right now, it feels a lot like the end of the world. 
On the other hand, it was weirdly a relief. It was good to be told I'm not lazy for being sleepy constantly, and I'm not imagining being in pain. It at least gave an explanation for why I leave trails of hair wherever I go, and the random bruises that were a bit scary at first. Whilst having 'brain fog' makes me feel like part of my identity is being torn away, as I pride myself on being articulate and sharp, it's good to have a reason for it. 
I was also quite glad to be told it's not coeliac disease, as all of my favourite foods contain gluten, and I was really anxious about that kind of massive lifestyle change. Please don't take my beloved toast away!
There's a whole lot of accepting, processing, and considering to do before I fully understand my feelings about it all, but I'm lucky to have a great support system in place, and I know it will be okay!

The Future
I'm going to be going to physiotherapy to be taught how to exercise in a way that won't make things worse, and will help build muscle strength to combat things like my wobbly ankles - fall avoidance is good! Aside from this, it's up to me to work out what helps and what makes me feel worse. GPs avoid giving advice now as with fibromyalgia, what helps one person may hider another. It's very much a case of feeling around to find what's good and what's not. It's important for me to reshape my life and career goals to something both fulfilling and realistic. Working some hugely active full-time job will end up making me ill, but something flexible like writing on a freelance basis would be fanstastic for me. I'm just going to keep an open mind and find that balance between living the life I want and not leting it 'win', and keeping myself as fit and healthy as I can.  

If you have any questions about fibromyalgia, or any tips, or are going through something similar, feel free to message me any time! 

  

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