health, lifestyle WTF Is Fibromyalgia? 13th January 2018

This fancy word has been given some attention lately because of Lady Gaga’s “FIVE FOOT TWO” documentary and 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 is very, very hard to treat/diagnose. So the more attention it gets the more I feel this will benefit thousands of people; both sufferers and those who know someone who does.

The reason why I bring this is up is because I have it (yey me!) and was diagnosed with it around 3 years ago. I’m lucky and fortunate in the fact that I have it mildly compared to others 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.

Fibromyalgia or “FMS” is a little known but sometimes incredibly debilitating long term condition and it’s often associated or confused with Chronic Fatigue Syndrome (CFS) or ME as they all present themselves with very similar but very varying symptoms and very different levels of in which 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’s basically a condition that causes widespread pain all over the body. Sounds like fun right? This can be a minor and dull ache/stiffness as I get or crippling and extremely painful, like a burning sensation in their joints or sharp stabbing pains such as Lady Gaga seems to present in her documentary.
But that’s not all! 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 Fibro and have a sit down with yourself and ask 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. Like I said, 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 – I did and it made explaining my issues and balancing my life so much easier!

For around 10yrs I was told I had anxiety and depression, coupled with persistent, mind numbing and un-treatable headaches. But it turns out it was a little more than that and hindsight is a wonderful thing. FMS may just be an “umbrella” term, but regardless it was nice to know that there was something else going on and I wasn’t just extremely unfortunate/broken.

As I said before, my symptoms are relatively mild and I am very lucky compared to others. I don’t often notice it because the symptoms I do have are pretty easily controlled and if I get to them before they are exacerbated, 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 fatigued, I’m more than just achy, I’m more than just “under the weather”, I’m more than just feeling like shit. This what this post is all about. I want people to try and understand that their dismissive “ah you’ll be alright’s” or eyeroll’s is not helpful. Never in the history of ever, has that been helpful.

My most prominent symptoms are the headaches, fatigue and the 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, and occasionally I will 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.

With the headaches, 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 sounds great.. I have an excuse to nap and everyone loves a nap, but no – it’s a f**king 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 100% of my concentration just to stay awake and it started to affect the quality of my work. It sucked.

If something is exhausting me (and it’s usually simple social interaction that does this) 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 won’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.

Finally, anxiety and depression. My oldest friends. Mild or manic, 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 the every day struggle just to get up in the morning.
I don’t know how true this may be for others with FMS but mine at least is a chemical problem. There’s no cause or effect for it and it’s not something that was necessarily triggered; I just don’t have the same chemical mapping as everyone else and my happy brain chemicals are pretty depleted compared to the sad ones. The bad outweigh the good and my body can’t compensate for that on it’s own which is when the anxiety/depression then presents itself. This ultimately means I have to be medicated for the rest of my life which I really I don’t mind; I’d rather pop a pill or two to counteract the issue and it manages it very well.
I’ve found 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” because they don’t understand it. By all means 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 was drastic, scary and downright dangerous to my health and well-being. Please do not 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 to someone.

So overall, it sucks. I cope and manage very well and I’m 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. Even if you have just one person who does that for you and is in your corner, it make’s such a difference it’s unreal. 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 they didn’t!

I fought for a long time for a 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. Nothing is more frustrating than hearing “you’re just lazy”, “there’s nothing wrong with you”, “you’re just depressed” statements and I refused to give up for myself because I knew deep down there was more to it than being tired and suffering with headaches and pains. Especially since I may be a lot of things – but lazy is NOT one of them. I asked for help from so many different people and found the responses very different. Don’t be that person who dismisses it, assumes they know better or just think you’re being a hypochondriac. It’s annoying and really soul crushing.

If you come across someone with FMS 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.
I hope this has been helpful to some people and would love to hear from others about their thoughts and experiences on the subject. I’m more than happy to talk to others in the same position if they’re struggling. Just let me know in the comments below ♡

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5 Comments

  • Theresa Marie Daily posted on January 16, 2018 at 4:15 pm

    Honestly, you are so strong. This sounds dreadful and physically and mentally painful. I have ligament laxity which is basically like “being super flexible in the ligaments,” but, it actually causes some pain too, not as much as fibromyalgia though. I had a friend in high school who had fibromyalgia and she would miss days because of the pain. I hope you feel better and find a way that the pain will lessen! (:

    Reply
    • L △ U R △ posted on January 16, 2018 at 6:04 pm

      Aww, thank you! That’s so nice of you to say – and thanks so much for taking the time to read it too!

      I’m honestly very lucky compared to some people. It’s mild and manageable – other people are completely debilitated by it and I can’t even being to imagine what that’s like. So I definitely count my blessing on that!

      Is it a bit like hyper flexibility? I used to work with someone whose daughter had something like that and she was always in pain. It sounded awful for her, poor thing x

      Reply
  • Vibes life us posted on January 17, 2018 at 3:54 pm

    I’m pleased you got a diagnosis. So many people are unaware of this condition. I have shared on Twitter for you ✌🏼

    http://www.vibeslifeus.com

    Reply
  • Halleigh posted on January 19, 2018 at 5:32 am

    I have two friends with the same condition and they have found essential oils to be super beneficial. Kuddos to you for being an advocate and seeking proper dignosis.

    Reply
    • L △ U R △ posted on January 19, 2018 at 12:40 pm

      I’ve found they help too – there’s tonnes of things that can exacerbate your symptoms, right down to your food. Which I guess is the same for a lot of conditions.
      But thank you so much for the lovely comment – means a lot to me!

      Laura x

      Reply

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