Sunday, 12 May 2013

Living With Fibromyalgia #1 - Introduction and general symptoms

I've tried to write posts about Fibromyalgia time and time again but it never turns out how I want it to. Some people know absolutely nothing about fibro, some think they know about it but are misinformed, and, of course, there are thse that are aware too. But trying to write an article that caters to everyone is quite difficult and I often find myself over explaining things or trying to make sure people don't think I'm whinging or that they don't dismiss fibro in the way that some often do.

But I know that, however much I write, it'll be almost impossible fect for every group - So I want to write a series of posts, just talking about various aspects of fibro so that anyone who Is interested can learn more about it and anyone who's on the path that fibro leads us to, can know they're not walking alone.

Today, May the 12th, is the day that many fibro sufferers consider 'Fibromyalgia Awareness day' - This isn't, yet, an officially recognised awareness day but many are working so that it can hopefully become so one day. So it just seemed like the perfect day to begin writing about it.

I've thought about what I'd like to put in this first post but most things would be too much for an introductory post so I won't go in to a lot of detail. But I believe I've had fibromyalgia, in varying degrees, for my whole life, or at least for as long as I can remember. For most of my life it was difficult, but I was able to carry on like normal, just having to fight harder than I otherwise would have, though I did miss a lot of school due to illness. But now it's considerably worse and has changed my life in a lot of ways.


Invisible illness' - You can't always tell from the outside.

A lot of people ask what Fibromyalgia is - For a detailed breakdown of the meaning of the name you can look on google, for a scientific explanation you can check the same sites. But fibro is still a relatively 'new' condition, in terms of its recognition and the causes of it are still, for the most part, unknown. So, for a sufferer, the best way to tell you what fibro is is to list the symptoms.

Various websites will give you a whole long list of things, but each and every person varies. In all honesty I have about 90% of the symptoms that are listed in a majority of the lists I've read, but I'm only going to list the ones which I feel make a big difference in my day to day life, but keep in mind there are many more that I haven't thought to list this time, too. Some people will have all, some will have a few, some people will have them mildly, and some people much stronger - There's no 'one' definitive list or answer.

So here is what fibro means to me:

- Pain. Widespread pain throughout most parts of my body, most of the time. I could sit and list all of the places that are in pain as I write this, but it'd be a waste of time and energy. Can be sharp pains, dull aches, burning pains and sometimes it feels like it's in the joints and sometimes in the muscles. Lots and lots of pain.

- Fatigue/Exhaustion/Insomnia - sleep issues. I feel devoid of energy pretty much all of the time, but that's sometimes coupled with the absolute inability to sleep, and sometimes it's with the inability to stay awake.

- 'Fibro fog' - Disorientation, memory problems, concentration problems, general muddle headedness. Where I used to be able to hold long and succinct conversations I now, often, forget what I'm saying, half way through a sentence and have to be reminded of the whole conversation. My head gets muddled very easily and I just don't feel like I have the intelligence I once had.

- Depression and anxiety are often linked in many ways with fibro.

- IBS - Digestive problems of a massive variety. Most know what irritable bowel entails.

- Headaches/Migraines. I've been susceptible to migraines since I was 9, and I get them from time to time still now. Headaches are more frequent but, thankfully, more manageable. I'm on day 6 of my current headache, it's constant and unpleasant but it doesn't stop me doing what I need to do - But it gets you quite down and sometimes will get worse before it gets better.

- Swelling in arms, hands, fingers, ankles, feet. From time to time my whole arm including hands and fingers, or my ankle and below, will swell up to such an incredibly uncomfortable extent that it is very very painful. There's never any reason, and it can last for five minutes or five hours.

- Sensitive to bright lights, smells, sounds etc.

- Incredibly sensitive to touch. My whole life people have touched me gently, I'll say ow and they don't believe me. The softest touch can make my skin hurt, a lot. The gentlest prod can make me feel like I'm bruised.

- Burning sensation/stinging for no reason on skin.

- Extremes of temperature - Often feeling either really hot or really cold. Though not constantly

- General nausea, just because.

- Pins and needles in really weird places, my lower back, my face etc. I remember I used to get pins a needles in my face a lot at uni and it used to always perturb my friends somewhat.

- Dry eyes, nose and mouth. I can't get contacts because my eyes are so dry, even when I use things to try and help them they rarely last long. My nose and mouth are really dry a lot of the time, too, really uncomfortable.

- Muscle spasms - In any part of the body, for any reason, any time. They just happen. It hurts.

- Muscle weakness. My muscles feel weak very very quickly, sometimes through being used or just sometimes for no reason.

- Joint stiffness.

- Restless leg - I can get restless leg which can last even when I move around and can last over a day, but it's often normally just under the more normal circumstances.

As I say, there are more symptoms which I have too, but I think this list gives a good idea of how this would affect day-to-day life. And I think the post is more than long enough.

Invisible illnesses are a nightmare, you'll see me walking around town and other than walking awkwardly you'd not know there was anything wrong with me - But every day is a massive battle. I take a lot of medication and it barely takes the edge off the pain and discomfort I feel every hour of every day. But I'm lucky because I have my son, my fiance, my family and my friends who help and give me a reason to not let this condition beat me.


Mad Mum of 7 - Living It Large

10 comments:

  1. Lovely post darling
    Terry xxx

    ReplyDelete
    Replies
    1. Thank you :)

      Can't believe how nervous I am about it, didn't think I would be. Going to step away from the Internet for a bit I think xxx

      Delete
  2. I really liked reading this - have never heard about it before. Don't ever be ashamed of your disability, anyone with disabilities are still human and takes someone strong to stand up and tell their story. Your a strong individual who remains strong through out the pain and you deserve a huge applause for that. Well done.

    Kate - sparkle dust xx

    ReplyDelete
  3. Good post, I'm a fibromite too and sometimes write about how fibro affects me. Having what is most of the time an invisible illness is extremely difficult and something people too easily dismiss. Despite having it for years myself I'm still trying to find medication and a lifestyle that works for me, although I often worry that's seeking the impossible.

    Becky x
    BeckysBoudoir.blogspot.com

    ReplyDelete
    Replies
    1. Thanks Becky.

      Mm even people who know about it often seem to forget, not in a nasty way but just because they can't see our pain means that unless we make it obvious, they aren't aware. And that's hard because we need people to understand but we also don't want to have to constantly tell them.

      I think there's a big chance you're right, but there's people who do find help, so hopefully it'll be our turn soon. I've tried all sorts of things and not much has worked, but plenty more out there to try and I'm finally being referred to a specialist, thank goodness xx

      Delete
  4. Great post. Although I don't know you very well, I am very proud of you. Dealing with a condition is not easy but you are a very very strong person. I am glad that you have a lovely family supporting you and that you don't let it affect you.
    My best wishes,
    Dany

    ReplyDelete
    Replies
    1. Thank you, so much, for your lovely comment Dany :) And for all of your others, they're always so lovely :)

      Delete
  5. Brilliant post written very clearly. I share many of the same symptoms as you but only just realising that my "dodgy tummy" could be related. Thanks for linking up to #tired&exhausted. Hopefully you'll have another post to share next month (opens first Sunday in Feb)

    ReplyDelete