Saturday, 31 May 2014

Is Fibromyalgia real?

Big question to head this up with, eh? But I'm not one for beating about the bush and this question is Exactly what I want to write about today.

Is Fibromyalgia real?

I'm not a doctor so I can't tell you anything from a medical perspective but I can tell you from the perspective of someone who suffers from a chronic health condition and my answer is...

'I don't know.'

I don't know if fibro is real because they don't know what causes it, they don't know what it is that makes us feel the way that we do. The name Fibromyalgia (and I am quoting from Wikipedia, here, so this is as accurate as the Wiki writer is) 'derives from New Latinfibro-, meaning "fibrous tissues", Greek myo-, "muscle", and Greekalgos, "pain"; thus the term literally means "muscle and connective tissue pain".' (quote from http://en.wikipedia.org/wiki/Fibromyalgia) When they find out what causes fibro then the name 'fibromyalgia' might not be the right name anymore, who knows?

What I do know, though, is that this pain is real. The exhaustion, the headaches, the IBS, the fog, the muscle weakness, skin sensitivity and... ok well I'm going to stop, I have so many symptoms that it's hard to count and sometimes it's hard to remember them all. You might say that, if I suffer with them then I should remember them! Well imagine living with this, in varying degrees of severity, for your whole life. And then imagine that you spent most of your life telling yourself it's normal, everyone feels this way and you're just weak. So, no, I don't remember every symptom because I spent most of my life thinking they're normal.



Would you like some coffee with those meds?
I fully understand why some people doubt fibro, and other chronic and invisible illnesses. It's hard to understand what you can't see. And with something like fm, where there's no one blood test or x-ray that can give you a 100% answer, it's easy to believe that it just doesn't exist. But I can tell you that there are Countless sufferers out there who will disagree with anyone who thinks that - What we feel is real, I promise. 

There Are people who're misdiagnosed because it seems to have become a cop out for doctors. And I do believe there Are people who just play things up for sympathy because I've seen it happen with other illness and other situations, people like that are out there. But, again, that doesn't take away from what's happening for genuine sufferers. 

You must also keep in mind that there's a wide variety in severity when it comes to conditions like fibro, and plenty of others too, so just because you know someone who has it who's 'just fine' it doesn't mean that those of us who have it to a stronger degree are 'just fine' too. 


Not quite the height of fashion but another way to get through the day

I know this post is rather defensive, but sometimes that's necessary. Chronic illness, invisible illness, everywhere is being ignored, discounted and played down by a lot of people - Sometimes through lack of awareness, sometimes through anger, sometimes just because they don't understand, but it's really important that people understand the truth because it could be tomorrow that someone comes in to your life that suffers with fibro, ME, lupus, depression or anything else that you can't see but really Is there, and you'll need to be able to understand all of this. This post was a long time coming, but it was sparked when I got drawn into a very big discussion with someone who was convinced fibro isn't real - Many of us got involved and it got me thinking about how I'd have wanted to respond, at that time, if I'd had the chance to put things in to words properly.

I don't know if fibro is real, but I do know that there's a condition with a wide variety of symptoms, that many of us have, where our symptoms overlap in many ways - And I do know that I WISH it wasn't real. 


On a more positive note some of the lovely ladies, from a group that I'm a part of, thought of a way to improve awareness of invisible illness by using the has tag #YouCanSeeIt followed with ways in which our conditions show, even if it's not the obvious. I've written a good few myself, had some great replies and re-tweets and the # is really coming together - Keep an eye out for it and if you want to get involved please do!

To keep up-to-date don't forget to follow me on Bloglovin and Twitter @petitmoi_bigworld

15 comments:

  1. Hi Laura. Fibro is as good a name as any for it from my point of view. I don't really care what they call it, just that there is a name for this collection of odd symptoms that means I'm not going crazy. When I was diagnosed, 20 odd years ago, it was after my GP had done every test he could think of, many of them twice, and had come up with no answers. He then referred me to the Royal National Hospital For Rheumatic Diseases in Bath. I walked in to my appointment there, with no idea what to expect. They'd read my file, knew my symptoms and performed more tests. One of those tests (which I believe is not carried out often these days) was to manipulate known trigger points - I had no idea what they were doing, I just knew that certain areas on my body were agony when they were pressed. IIRC, there were 21 trigger points and I reacted strongly to 18 of them. I came out of that appointment in a wheelchair, due to the pain caused by the tests, and with a diagnosis of fibromyalgia.

    I suppose I'm lucky in that I had six years or so of constant symptoms and then they seemed to ease off. I'd get bad days, but not bad weeks or months. That lasted for well over twelve years. I'm now back to the constant symptoms and it's a shock to the system all over again. I was shocked that in those dozen years, there's been no progress in treatment and there's nothing my doctor can do to help me. The main treatment available caused blackouts when I tried it the first time round.

    sorry for the long comment!

    ReplyDelete
    Replies
    1. Don't be sorry, what's a blog post like this for but for causing conversation?

      I agree that the name works, but I was working on the point that I can't promise it's exactly as they think it is, right now, one day they might work out the cause and there'll be a name that fits that.

      But yes, the name doesn't matter, the diagnosis does, especially when, as you say, you've had endless tests and endless 'we don't know's

      They do still do the trigger points, I can promise you that. Though now it's 18 trigger points, not 21. Flipping ek I hope I don't need the trigger point test, she's done it twice now (local rheumy, doctor I saw at bath didn't) and I'd rather she kept herself to herself if I see her again - OW

      Wow, 12 years with it being on and off was lucky, it's such a shame that it's reverted back, now. A lot of people have ups and downs, I find I'm mostly downs, or maybe all downs, but sometimes it drops even more down heh.

      It's a bit scary, the lack of progress, but I think they seem to be making a little progress now - At least I hope it works out that way

      (So glad I have my wrist supports on for writing that!)

      Delete
  2. I'm really glad you've done this post at a time when my partner is in at the point of having every test possible and still undiagnosed buy fibromyalgia has been suggested as a possibility and this is 5 years on from when it's started . I find aloybif people saying it's a lie but I see the side of it no one else does . I'm glad you've put it out there and written about it

    ReplyDelete
    Replies
    1. I'm glad the post is something that you can relate to, I'm just sorry that you're having to battle with people not believing, too.

      Thank you, I hope that the post reaches people who need it the most - Either sufferers or people who need to understand

      Delete
  3. I can 100% agree with the fact that because you can't psychically see it people dismiss these 'hidden illnesses' I'm so fed up with people acting as if everything you tell them isn't true and that we make these problems up for sympathy, attention etc, I have developed severe health anxiety and panic attacks over worrying for so long what is wrong with me, u have good days and bad days, sometimes I feel sick for weeks on end, feel like I can't walk, I'm so tired and everyone makes out I'm lazy, I'm probably the most unlaziest person in the world, my brain tells me different to what my body wishes to do!
    Thank you for making people aware of this and hopefully we will all find a cure to these unknown problems, I haven't been diagnosed with a specific "medical problem" yet but fingers crossed one day I'll know!

    Good luck to you and everyone else out there suffering!

    Frankie Boo Blog

    ReplyDelete
    Replies
    1. Oh I'm so sorry that you still don't have a diagnosis - Keep at them for one, keep asking, keep getting appointments, Make them listen to you. A diagnosis is an amazing thing when it means that you have a whole group of people who have a chance of understanding you, as well as having a name to give these symptoms.

      I hope you get your diagnosis soon and thank you so much for your comment

      Delete
  4. Thank you for so much for this post. I'm 19 years old and have recently been diagnosed with fm after a gruelling 7 months of not knowing what was wrong with me and why I was in so much pain! I ended up dropping out of my first year of University as it all came too much to bare with the constant pain, exhaustion and low moods. The funny thing is the most issue I have struggled with is trying to get other people to understand what fm is. Of course I can't expect anyone to feel exactly how I feel, nor would I want them too, as the pain is really horrific (as you'd know!). Yet, it seems people just ignore how I feel because I look 'okay' and they can't see that I'm ill even when I feel like my whole body is giving up on me! So thats why I'm leaving this comment, as it is nice to find someone who actually understands how I'm feeling. I will definitely check out the # on twitter as it sounds like something that will benefit me mentally!

    Leanne xx

    nailsandteapots

    ReplyDelete
    Replies
    1. Thank you for your comment and I'm really glad that the post helped.

      It's very very difficult to live with invisible illness - I've had it my whole life so I can hide the symptoms quite well, I'm actually having to teach myself not to hide things so that there's more of a chance that people can understand, how mad is that.

      I'm very sorry that you've been diagnosed with fm, it's not a great diagnosis to get, but I am glad that you finally have your answers and I Can promise that there are plenty of people who understand.

      Definitely check out the # - Awareness is everything and I think this one could really take off xx

      Delete
  5. I was diagnosed with fibro late last year, one thing that has been the hardest is the rather sceptical reaction and look from friends and family when I have explained it too them. I wake up in pain most days and attempt to go to sleep with it too.

    Tiredness is like a blanket that drapes over me and as a mum of two young children I simply cannot let it get to me, so fight on like nothing is happening. This only adds to the scepticism I guess with people around me thinking it's a lie, well no I have to carry on life with painkillers and meds to help me sleep, I can't just stop mid way through the day.

    With no test to 'prove' it is real, no actual rash or fault it is hard to show how much it affects you, my husband still doesn't get it really, but sometimes until you've experience it you can't understand.

    I've always said like with endometriosis (another of my ailments) if I walked into the doctor with an arm hanging off everyone one would feel sorry for me, but because you can't see it no one thinks its real. Like mental illness I suppose. Thanks for writing such an honest post and sorry to ramble xx

    ReplyDelete