Tuesday, March 18, 2014

Day 1625 - Fibromyalgia

Time for a fibromyalgia update.



If you've been reading Deep Fried Fruit for a long time you'll have caught snippets of information about some of my ailments.  I have a few, but I don't usually give them much air time as they're bastards and I don't think they deserve my energy.  Occasionally though there are people who want me to chat about it to help them with their own "bastards" so today is the day we go "bastard hunting".



As I said, I have a few ailments.  I have suffered migraine my entire life and I still get migraines to this day.  I have learned to manage them to a point I can minimise their frequency and severity through diet, massage, hormonal "manipulation" and exercise.  For more information on my migraine journey just type "migraine" in the search window up there in the top left corner of the blog to read about this little bastard. 

I have food sensitivities which I came across 13 years ago and am now fully on top of. It is my new normal.  Anything is better than vomiting every morning, living with constant migraine and IBS.  Once I discovered my food sensitivities (I have issues with amines, salycilates and MSG/flavour enhancers) my migraines were cut by around two thirds and the vomitting stopped. Relief! So I don't care that I can't eat certain things (easy to say as I'm a non-foodie) as long as I don't have to sit on the toilet with a bucket on my lap as my head houses jack hammers.  For more information on my food sensitivities just type "food sensitivities" in the search window up there for the goss on this little bastard. 

I also apparently have fibromyalgia.  I always preface my fibromyalgia journey with "apparently" because I am still not convinced I have it.  Having said that, with every passing year the symtoms increase, as do the pains in my body, so I am thinking perhaps I'll take the diagnosis.  I first chatted about it here.  As I said in that post, I don't like to give this little bastard any energy ... energy gives him power and I refuse to feed that power.  But today I'm going to give you some of the facts about fibromyalgia.

As I type this I have pain shooting up my back, down my arms and across my neck and shoulders.  The neck pain is referring pain behind my left eye which is the spark of a migraine,  Each morning when I awake I try not to focus on it.  The burning and dull aches are often there, but I choose to push through them.  The bastards don't deserve my attention ...

So what is fibromyalgia?

Fibromyalgia is a syndrome or a condition. It is not classed as a disease.  It's not life threatening.

Some studies suggest that fibromyalgia is traced to serotonin levels which is why people are often prescribed antidepressants to help manage this bastard.  I went on antidepressants for a while when I was first diagnosed but they sent me a bit "high" and I got a bit "irresponsible" on them.  Life was bloody good! Too good.  So now I manage them by creating my own natural highs through positive psychology techniques, self awareness, physical stance, dancing and smiling.  That's a post for another day ...

Symptoms for fibromyalgia sufferers vary from person to person.  When you read the symptoms half the population can probably relate to them.  Many of the text book symptoms are as follows:

  • Arthritic-like pain
  • Increased sensitivity to pain (yes)
  • Increased sensitivity to sensory stimuli such as cold, heat and smell (hell yeah)
  • Extreme fatigue (that "slightly fatigued" statement in my banner is often an understatement)
  • Problems with memory and concentration (memory yes, concentration comes in waves)
  • Problems with sleep (yes, sleep patterns are very odd)
  • Irritable bowel (yes, but not as bad as when I had the food issues)
  • Over active bladder (every event or trip is determined on how many toilets are available)
  • Headaches (well yeah, the story of my life)
  • Tingling in the arms and legs (yep, however this comes in waves)
  • Swelling of limbs (yes, but only under normal swelling circumstances eg heat or plane travel)
  • Fog (this is often referred to as Fibro-fog and has had a huge impact on my life)
Fibromyalgia is not necessarily a constant.  Sufferers can go through periods of complete wellness.  When I was first diagnosed I reckon I had it constantly for around 18 months, but that was probably because I gave into it.  I allowed myself to become defined by it.  "Hi, my name's Leanne and I have fibromyalgia".  I wouldn't plan a luncheon with friends in case the fog or fatigue took over and I had to sleep.  My husband would come home in the day time to get kids from school because I was on the couch with weird tingling and feelings of "constriction" going through my arms and legs.  The fog was so intense I had trouble focussing on anything.  I was living in a constant haze with my head in the clouds that I couldn't snap out of.  Then one day I did snap out o fit.  Perhaps that was what the antidepressants did for me. They gave me the space I needed to snap out of it ... during which time I created positive ways to live with this bastard.

You can't cure fibromyalgia.  It just is.  If you have it you can either allow it to define you or you can make the best of your new normal.

There are times when you go into a type of "remission" and there are no symptoms at all. They are good times! Then there are times when you have all the symptoms and you have to head back to the couch.  It's important to lay down with this bastard from time to time.  It's how long you allow yourself to stay down that's the difference between living with it or letting it live in you.  You call the shots! 

This is my normal.  

Those pain points up there in the picture. They are my pain points.  Right now, right this minute, I have the pains in the neck and shoulders and between the should blades. That pain is a dull throb which ultimately ends up referring pain into my head and face and may become migraine.  My lower back burns.  My arms burn.  My legs are tingling.  As I sit here and write about it I can feel the symptoms really prominently.  If I was writing about something else I would shift my focus and I'd be able to rise above the pains.  That's why this bastard doesn't get my attention.  When I give him attention he takes over.

So there you have it.  That is fibromyalgia.  Yes, he's a bastard, but only if I let him be.

As I write this post I am conscious of the fact that many readers may have bastards in their lives which they have yet to get a handle on.  My bastard hunting took years to perfect.  Learning to live with a new normal is not an easy thing, but it does get better.  Believe in the possibilities and you may find you can create a new level of wellness that works for you.  




15 comments :

  1. I started getting migraine a few years ago, and with it, that neck pain which is almost worse than the migraine! It's a shocker. It took me about 18 months to make the connection - and I only did when the neurologist pointed it out. But then I still half the time think the early symptoms of the migraine are a bug, or a hangover (then I realise I only had one drink) or some other thing...so I'm a little hopeless at working these things out...

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  2. I started getting migraine a few years ago, and with it, that neck pain which is almost worse than the migraine! It's a shocker. It took me about 18 months to make the connection - and I only did when the neurologist pointed it out. But then I still half the time think the early symptoms of the migraine are a bug, or a hangover (then I realise I only had one drink) or some other thing...so I'm a little hopeless at working these things out...

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  3. OMG that fibromy-somethingorother sounds like a very big bad bastard. How awful that that is your normal. I've read a little about your migraines before and will have to go back and search more. I've always suffered from them but they are becoming more frequent. I need to take some action ..

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  4. Thanks for sharing Leanne. I have another friend who has fibro as well and it consumes her on a daily basis. I might link to this on FB and see if she picks up on it, I think your attitude towards the bastard is fantastic. And like anything, the more we think about it the more we feel it. I wouldn't care if I had to live on corn and noodles, if it meant the difference between IBS and vomitting every day and NOT doing that, I'd choose the corn and noodles!! x Aroha (for #teamIBOT)

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  5. Wow! Your fibromylgia symptoms that you describe sound just like me, although I've never been diagnosed with it. I'm on antidepressants too and I've suffer fogginess and eratic sleep patterns just to name a few. Thanks for a very interesting read.

    Camilla @ www.planetcamilla.com

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  6. Gosh Leanne, I never knew, and to read about all that you do with all the ailments you have. You must be a tough nut! I've written a few article about fibromylgia, more in relation to how acupuncture and Chinese medicine can help treat the condition, I'm sure you've tried every avenue, but I've heard it's meet with great success by many! Em

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  7. Leanne, your normal is a lot to deal with, especially as it's been part of your life for way too long.
    I suffer from migraines, but definitely nothing like you have. take care hun xx

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  8. Wow your post has freaked me out! I can associate with many of those symptoms, especially the fog, fatigue and those hip pains! I almost pulled over in my car last weekend after an hour's driving as my arms went tingly and fingers like carpal tunnel! It lasted for 24 hours! I have been having muscle spasms and all kinds of weird things of late which I have put down to the hormonal changes of breastfeeding. How is it diagnosed?

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  9. Leanne, you already know that you are my inspiration. I look forward to beating the bastard ailments and live such a productive life as you do.
    You are a living testament that it can be done. I will continue to work out my coping mechanisms and vow to use my time as well as you have in your new normal.

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  10. I have fibre and chronic pain, and I choice to see them as one and the same, rather than two diagnosis. Cause you are right, when you focus union them they grow and get clearer. I relate to so much that you said. I'm curious to see how I age with it, as it is a new diagnosis, and you believe you get more and more fibre like each year. I would love to read a post on positive psychology and other things you are doing to manage your fibro. I am experimenting with these sort of things too, and would love to learn off you. Oh, and my family also don't eat salicilytes, amines and glutamates!

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  11. Holy moly Leanne! I've never heard of Fibromylgia. It sounds horrible and the pain and symptoms are not something you wish your worst enemy to live with. I'm glad to hear you have found ways to cope with it.

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  12. Thanks for sharing this Leanne. I've heard a lot about it before, but never really knew what it was, and always felt rude asking.
    Love your attitude. You are inspirational on so many levels my friend xx

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  13. I love your positive approach to your health challenges Leanne. I hope you can continue to not let them overwhelm you and live life how you want to live it x

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  14. You have an awesome outlook on your health. Sometimes that can really be the difference between how severe and episode is.

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  15. I have a friend with fibro. In a word, it is shit and frustrating they know so little about managing it. All the best in finding a management plan that works.

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