fibromyalgia

1000 Day Of Pain

Fibro TirednessHaving been laid up for around a month with a flare up that just refused to go, I finally got out the door for a run the other day.

The relief of running was amazing.

I always worry when I am struck down with a flare up that this might be the time that I may actually have to think about stopping running once and for all. The doubt that comes into my mind is unavoidable. As the days pass and I’ve still been unable to put my trainers on I start to worry. Running is my “normal” and to lose it would be a harrowing loss. Despite everything I have fought over the last three years, losing the ability to run, to be competitive, to be sporty – well the thought leaves me cold.

But the trainers went back on and I am finally training for the 100k challenge in September 2015. I went out the other night, my legs were tight from a lack of training, the pain was as intense as always and it was like starting all over again. I had to learn about the pain, I have to learn to run through it and I had to learn to turn off to it all over again. But I was smiling. I was being normal. I was finally at the start of the hardest challenge of my life and it made my day.

But it was while I was on my way round my route that it dawned on me that I had been suffering for around or as close to 1000 consecutive days I can could calculate.

1000 days.

Man, when put like that no wonder I feel warn out all the time. 1000 days of suffering with Fibromyalia. 1000 days of fighting. Compared to around 99% of all my new Fibro Fighting friends, I have connected up with via my whole Running With Fibro community, 1000 days is nothing. I’m hearing from people who have been suffering for a lot, lot longer than me. But that 1000 milestone was quite rough. You don’t realise just how long you have been fighting until you tally it up like that.

NO WONDER I AM SO BLOODY TIRED.

Tired of Fibomyalgia

 

So what have I learnt?

This Fibro isn’t going anywhere anytime soon

It’s a rough lesson and one I’ve not come to terms with. I doubt anyone suffering truly gets their head round. There is a part of me that believes that if I ever could I would cure so much in my head. To date – I’ve not managed it.

When I am flaring and the pain is insane and breaking me this fact always, always comes back into my head and it breaks me some more. No matter how many days I have suffered so far, there are more to come.

All this said, I’ve learnt it’s not going away (on a flip side).
I’ve learnt that it’s here and you have to soak it up. You have to get up in the morning, you have to get through the day and you have to learn to smile. Regardless of how fair that is – you have to do it. Otherwise what is the alternative? You can grab what little “normal” Fibro leaves you with or you lose.

I can cope

Not always too well and not always in a way that is great for everyone else to live with but I cope.

The smile may be false a lot of the time. I may feel like I am going to break into tears at any point, I may wake some days not knowing how the bloody hell I am going to get through it – but I cope.

The drugs don’t work

They just don’t.
Not for me. They dull it and that’s it. To date I’ve not be prescribed anything that has given me any kind of relief.

Others have and others have tried medication that I am yet to get to so maybe there is hope but at the moment my reality is that there is no rest bite.

If anything I sometimes put off going back to the doctor because I don’t want to feel like a guinea pig being tested on. I truly hate that side of it. I really do.

Lets face it, no one know what the hell causes Fibromyalgia – so how can they relieve it?

I have a stubborn mind

No matter how much pain I am in, my brain doesn’t shut up. For every day I can’t train my brain nags me “oi mate your not training, the longer you leave this the harder it will be to get back out there”. I know brain but I can hardly walk today so shut the hell up.

It won’t let me rest, which is great but it can also make things worse.

When I can train the last thing I need is an argument with my brain. I can’t train so please just leave me to it… please. But it a part of me I would never want to shut down. Without that voice nagging me to compete all the time I won’t get those trainers back on.

Fibro is a never ending journey

We all have our own journeys. There may be an end to it all at some stage. A breakthrough may be found, medication may be found that sorts all of this out but until then – its a never ending journey.

We all cope as best we can. We are all stronger than we realise, we all suffer in different way and we can all cope with different elements of this.

But we also have each other in this amazing community and that is priceless.

I’m at least out the door and training. I just hope I get to the finish line in September.

 

5 Comments

  • Charlotte Boone
    March 1, 2015 - 2:22 am | Permalink

    I enjoyed reading your article about running with fibro. I am also a runner and have fibro.
    I have neuropathy in my feet and they burn when I run. I have run 2 one-half marathons and some 5ks. Dr told me to take vitamin b complex for burning, haven’t seen a lot of improvement. I don’t plan to give up running.

  • March 1, 2015 - 7:17 am | Permalink

    Interesting. Got me thinking. Wonder when my 1000 days was. I think I have had Fibro since childhood, but diagnosed in 2010 (I am 44). Great to hear you are out running again. We are all sending positive thoughts. Ali x

  • March 1, 2015 - 5:15 pm | Permalink

    That’s really positive that you were able to go out for a run. I can empathise with everything you write. It is hard to get your head around the fact this illness is forever. It is scary how it has the potential to steal a part of who we are. It absolutely sucks that there is little doctors can do for us. I agree with you on the medication front. I have only tried a couple but neither was a particularly positive experience overall. I refuse to try any more. I’ve found the most improvement through things I’ve done off my own back- mainly diet and herbal therapies. I too struggle mentally when fibro is in full force. I like to be productive and doing things and when I can’t… that’s when I find it the hardest. We are incredibly strong people though, to get up, face the day and get on with it. I hope you don’t suffer too badly after your run.

  • Rosa Perales
    March 2, 2015 - 2:54 am | Permalink

    I had a flare-up December 5,2014 until Feb.15,2015 thought I was losing my mind it was so painful I cried almost every day. I went to therapy for 4 weeks warm pads,back & neck rub felt good until 1 hour later pain was the same. I was also walking weather permitted & practice yoga to relieve pain but again it came back I do not understand this wide spread pain from head to toes is so painful, my Dr.told me try Savella 25mg I did very expensive but did not help me can not sleep. I have taken many pain medications but does not take all the pain away. I keep a dairy & document how I feel what I eat and change of weather, if you can give me hope or any advice please contact me thank you!

  • Ali
    May 24, 2015 - 4:15 pm | Permalink

    Hi all,
    I’m happy to stumble on this blog. I haven’t officially been diagnosed with fibro but after months of bloodwork, MRI scans, CT scans, this diagnosis is being thrown around the most.

    I have also found that run and sun help the most.

    I suffer from a feeling of muscle weakness though no lack of actual strength and a bit of an “electric”
    Feeling in my arms and legs. Anyone else have that experience?

    I find that it all disappears WHILE I’m running…

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