Get comfy, because this is going to be a long one…
Where to start? Fibromyalgia is a fancy word has been given some attention lately because of Lady Gaga’s “FIVE FOOT TWO” documentary. More people are associating themselves as either having it or trying to find out more about it. This is great because it’s not heard of much and it’s very hard to treat/diagnose. The more attention it gets the more I feel this will benefit both sufferers and those who know someone who does.
The reason why I bring this is up is that I have it (yey me!). I was diagnosed with it around 3 years ago. I’m fortunate in the fact that I have it mildly compared to some. But it can be completely debilitating and the frustration you experience when people just wave their hand at you and say “oh you’re just tired all the time, it’s not that bad” makes you want to put your fist through their teeth.
WHAT IS IT?
Fibromyalgia or “FMS” is a little known but sometimes incredibly debilitating long-term condition. It’s often associated or confused with Chronic Fatigue Syndrome (CFS) or ME. They all present themselves with very similar but varying symptoms and different levels of how you are affected. Don’t worry! It’s not contagious or terminal, but there is no current cure.
To keep this short and sweet it basically causes widespread pain all over the body. This can be a minor and dull ache/stiffness as I get, or crippling and extremely painful. Not too different to a burning sensation in the joints or sharp stabbing pains.
Others symptoms can include increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, problems with mental processes/concentration (brain-fog), headaches and migraine, IBS, weight gain, anxiety/depression, feeling too hot/cold, insomnia, restless leg syndrome, temperature sensitivities and so on.
As you can see it’s the gift that keeps on giving! The symptoms are so vast and so varied you’re more likely to be diagnosed with something else completely and be told you have a million things wrong with you before they actually settle on this. All of the above are pretty much constant, if not permanent symptom of mine and I’ve been on so many drugs and been tested for so many different things before I got to where I am, I almost gave up and accepted that I was just unfortunate and burdened with an endless list of shitty symptoms with no name to attach them too. I’m glad I didn’t.
I urge people to check out the symptoms of Fibromyalgia. Get acquainted with it and ask yourself if any of it rings true with you. The issues you have may be more than what you originally thought and it is such a relief for someone if it is, because you then get a better handle and understanding on how to manage it. Because it’s not always recognised by medical professionals it can be really hard to get a diagnosis. But please keep pressing if you have that niggling doubt in your mind! Fibromyalgia might be a crap thing to have but actually getting a diagnosis makes the world of difference. It made explaining my issues and balancing my life so much easier.
I fought for a long time for diagnosis and even though I didn’t realise it at the time, I was symptomatic the whole way through. I just didn’t know what it was and neither did a lot of my doctors. For around 10yrs I was told I had anxiety and depression, coupled with persistent, mind-numbing and untreatable headaches. Nothing is more frustrating than hearing “you’re just lazy”, “there’s nothing wrong with you”, “you’re just depressed”. I refused to give up for myself because I knew deep down there was more to it than being tired and suffering from headaches. Especially since I may be a lot of things but lazy is NOT one of them. I asked for help from so many different Drs and found the responses very different. Don’t be that person who dismisses it, assumes they know better or just think you’re a hypochondriac. It’s annoying and soul-crushing.
As I said before, my symptoms are relatively mild and I’m very lucky compared to others. I don’t often notice it because the symptoms I have are pretty easily controlled if I get to them before they are exacerbated. So I can generally treat them myself. But when they all present themselves all at once it can be really hard for me to function properly and there are days where I struggle to get out of bed or manage more than just simple daily tasks. I have a really hard time getting people to understand I’m more than just tired, I’m more than just achy and I’m more than just “under the weather”.
This what this post is all about. I want people to try and understand that their dismissive “ah you’ll be alright’s” or eye rolls are not helpful. Never in the history of ever has that been helpful.
WHAT’S IT LIKE TO LIVE WITH?
My most prominent symptoms are the headaches, fatigue and anxiety/depression. I do get the pains a lot which are usually a dull and heavy ache in my joints and muscles, mostly my hips. I’ve always said it feels like a really nasty toothache right in the joints and bones. Occasionally I get the sharp stabbing in other places. Those are unpleasant, to say the least. Like a red hot poker has been shoved in places it shouldn’t be or barbed wired being pulled through your veins.
I’ll have one pretty much 5 days out of the week ranging from mild to “holy sh*t I think my eyes are going to explode”. I’m so used to having one I’ve completely forgotten what it’s like not to have a day without that throbbing and sensitivity in my head, and that’s actually really sad. If I’m complaining I’ve got one then it’s pretty bad because anything else is just “normal”, but this is generally my body’s way of telling me to slow down and a red flag for the fact I’ve been too ambitious.
The most frustrating thing of all is the fatigue. I literally CANNOT function or maintain any kind of enthusiasm for anything unless I can either detach myself for at least an hour from human interaction or go to sleep during the day. Now that might sound great. I have an excuse to nap and everyone loves a nap, but no – it’s a pain in the arse. It makes me constantly wary of my surroundings, the who/what/where/if/why’s over everything and adds stress to most situations you wouldn’t bat an eyelid at. When I worked in an office I had to use 80% of my concentration just to stay awake and it started to affect the quality of my work.
If something is tiring me (and it’s usually simple social situations) you’ll see it pretty quickly because my mood will shift. I’ll become irritable and retreat from a conversation and go pretty quiet. This isn’t fun for me and I get frustrated because this isn’t my normal behaviour and it gets interpreted the wrong way a lot of the time. I can’t participate the way I want to and end up with a near-permanent resting bitch face.
When this happens it’s me needing a reboot because I’ve drained my batteries, so to speak. If I don’t I then get the fibro/brain-fog and the fatigue. Sometimes it can be kinda funny because I won’t be able to string sentences together properly and end putting the words in the wrong order and it comes out completely backwards. I’ve come out with some crackers in my time. Other days when it’s more severe I’ll slur my speech, or it will take me ages to figure out the word I want to use or something that I want to do.. and I don’t remember how to do it or how to say it – even though I know exactly what it is I want to do or say. The dots just don’t get joined together and it can be really frustrating and quite scary at times because essentially you lose control of your body/thought processes. On a few occasions, I genuinely thought I’d had a stroke – that’s how bad it can get.
Having one or both of these is not fun and I feel deeply for anyone who has been touched by it because unless you have had it yourself you will never understand the depth of the pain it can cause. I say pain because it can literally hurt. A crushing, breath-robbing, relentless vice grip of pain in your chest. The weight of anything and everything on your shoulders and every day struggle just to get up in the morning.
I don’t know how true this may be for others but mine is a chemical problem. There’s no cause for it and it’s not something that was necessarily triggered. I just don’t have the same mapping or chemical balance like everyone else and my happy brain chemicals are pretty depleted. The bad outweighs the good and my body can’t compensate for that on its own. So anxiety/depression then presents itself. This means I have to be medicated for the rest of my life which I don’t mind; I’d rather pop a pill or two to counteract the issue and it manages it very well!
A lot of people will tell you to come off your medication because there’s something herbal or a natural alternative available. Or they simply don’t believe in “mental health”. This might work for some people but when I tried, and I did in gradually and sensibly as you’re supposed to, the repercussions and the change in my behaviour were drastic and downright dangerous to my health and well-being. Don’t EVER tell someone who is being treated for mental health issues to come off their tablets/medication. You are playing with fire and could cause irrevocable damage. Google does not always have the answer and unless you have a medical degree, you are not qualified to give someone that advice.
Fibromyalgia sucks. I cope and manage well and I remember every day I could have it so much worse. I also have someone in my life who understands my needs and helps me with them on a daily basis. Just having one person in your corner make’s such a difference. Plus the medications I take all work together to combat all the different symptoms. So I’m not nearly on as many drugs as some people might be!
If you come across someone with Fibromyalgia and they’re struggling, just ask them how you can help. If you don’t hear from them for a few days don’t take it personally. They’re just rebooting. If you think they’re being a little unreasonable/demanding, remember what may be contributing to that. It’s about patience and understanding.
I hope this has been helpful to some people and would love to hear from others who may have a chronic illness. I’m more than happy to talk to others in the same position if they’re struggling!
Until next time ♡