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Fibromyalgia

 

Fibro fog

Picture from Craig Martin Illustrations

At the end of 2012 after 9 months of thinking I had a bad back I was diagnosed with Fibromyalgia.  It was a shock as it’s a more permanent problem than a bad back, but good news in that I now know what I’m working on.

I seemed to have it worse than a few people I know, but a hell of a lot better than others (read here for my symptoms).

It’s unclear what causes Fibro, but I suspect that for me it was a combination of many years of sleep problems (different from Fibro sleep problems) leaving me open to two lymph infections, added to a cancer scare and lot of stress after my daughter was born 3yrs ago.  I suspect that there is a little genetic pre-disposition as well.

My plan is to document my story.  I’m hoping to atleast improve my symptoms and learn to manage the illness.  At best I would love to find a way to remove all my symptoms, but lets see how I do.

In the meantime I have already met loads of people struggling with the Fibromyalgia or a combination of Fibro and something else.  It’s such a weird illness, that I wanted to share all their blogs, so that other suffers can find stories of people to help them with their challenges as well.

 

Key Things You Need To Know

One thing I’m sure of is that it is different for everyone, so there is NO ONE ANSWER.

But there are also similarities, which give clues about the routes to try out.

Fibro is always SECONDARY to something else e.g. Thyroid disease, M.E, Chronic Fatigue syndrome etc.  If it appears like you don’t have a primary problem, then it is probably adrenal fatigue, which isn’t officially recognised by some in the medical profession.

What I’m concerned about is that with the recession, the only option for many people will be the Dr one, which means drugs, possibly if you are lucky some CBT (cognitive behavioural therapy) and encouragement to exercise.  That’s why I’m going to document everything, in the hope that I save some people time and money.

I found this really in-depth, if slightly long article that which explains the role of the Thalamus gland in Fibromyalgia and a 1hr blogtalkradio show about the role of the amygdala and this great combination of posts from ChronicFatigue.com.

I’ve created this Fibromyalgia Pinterest board of the interesting posts that I liked the best.  Check them out, they won’t all be relevant to you, but some will be, and it will save you some hours of googling!

To keep informed of everything I find you might want to follow me on twitter, like my facebook page, and subscribe to my blog (see RHS of home page).

 

The Areas You Will Need To Consider For Improvement

 

  1. Drugs: especially to improve sleep, and for some they help reduce the inflammation.  I tried them to give me a bit of a break/rest, but long term I’m unconvinced.
  2. Sleep: Improving your sleep is a the priority, I’ve always been full of tips for surviving on little sleep and improving sleep.  But as a priority I need my sleep to not just be improved, but brilliant.
  3. Exercise: I’ve always exercised, but less so since the pain arrived.  How difficult it is to know that you have to move despite the fact that it hurts, because otherwise it will hurt more.  But move too much and it will hurt worse.  Finding the ones that work for me will be difficult, especially fitting it in with a busy life and 2 kids.  Do not PUSH through the pain, however also do not STOP.
  4. Hydration: always important, and mine is pretty good, but I mustn’t take my eye off the ball.
  5. Nutrition & Supplementation: There is so much information, that it’s really confusing.  I’m a big fan of healthy eating already and take supplements, but I would admit to having been a lover of sugar (i.e. biscuits) and that is poison to everyone, but worse for us.
  6. Stress Relieving/Relaxation: the NHS have offered me some CBT and being ‘in the business’, I’m trying some other things too.  I’m also trying a different type of meditation, so we’ll see how that goes.
  7. Hormones: There is definitely a hormonal aspect to it, so hormones are worth looking at separately, even though nutrition and supplements may be the solution for them.

 

At the end of the day, the key seems to be to Know Myself and improve my Intuition about what will work for me, plus be willing to try something and fail.

 

Are we just more ‘sensitive’?

I’ve always prided myself on being a pretty together person.  But maybe I’m not so together?  Maybe my body, brain and spirit need a load more downtime than I thought?

I’ve come to understand that stress isn’t just emotional worries.  My body feels stress or pressure when it eats stuff that isn’t good for it or that it doesn’t like.  It feels overwhelmed in large groups of loud people.  It doesn’t like being surrounded by mess.  It doesn’t deal with being over-excited for too long either.  But this has given me a clue – that I can calm my body by using all of my senses – sound (music), smell (love incense), sight (pretty stuff in my house, touch (baths, cuddles) and the sixth sense (i.e. listen to my intuition more).

A lovely blogger who was once a homeopath sent me this information when I was diagnosed, and of all the information I got it was the most useful (although big thanks to everyone who tried to help):

In both cases, the patients were very much the  ‘golden children’ in their family who actually found life and the sadness of life too painful. They were both incredibly smart and super sensitive; it’s as if their body pains were trying to make them occupy their bodies and be here; they needed to learn to nourish themselves, not other people’s expectations of themselves if that makes any sense.

Once I stopped fighting the pain, and focussed more on my body, I do think that I started to improve much more quickly.

 

Groups

There seem to be a lot of Fibromyalgia groups, I wonder why?  As I plough my way through them, I’ll put them here with a description.

A fab list of people on twitter hosted by @May12th (awareness day)

FibroAction

Fibromyalgia Association UK

Fibromyalgia Network and their FB page.

UK Fibromyalgia

Fibromyalgia Support Net

Fibro Daily - a great website with many stories of people with Fibromyalgia

My Posts

Here is a list of all my posts about Fibromyalgia:

Lowchens and children

18 Months On From My Diagnosis With Fibromyalgia

Posted on May 14th, 2014 - By MummyWhisperer - 6 Comments

  I'm so sorry, it's been sooooo long since I wrote about my Fibromyalgia.  I feel especially guilty having been selected as one of the Top…

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Mum with energy

Ten Tips On How To Take Care Of Yourself!

Posted on Mar 17th, 2014 - By MummyWhisperer - 5 Comments

I've been wondering what to talk about with the gorgeous Danny Smith on his drive time show to Radio Verulam for a couple of days. Should it be my…

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Time to stop for a while

Meditation for stressed out beginners with little time who can’t Ohm!

Posted on Aug 14th, 2013 - By MummyWhisperer - 21 Comments

  All cudos to those who can 'empty their minds' or sit in a corner and 'ohm' for 30 minutes a day, but I just can't do it. I've tried…

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Muffin Top From Above

A ray of hope for all those excuses for being unhealthy, unfit and over-weight

Posted on May 21st, 2013 - By MummyWhisperer - 23 Comments

  Yesterday I asked what I thought was a pretty innocuous question on facebook and twitter " I'd love all the reasons / excuses why you…

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Progress

My progress 6 months on from Diagnosis with Fibromyalgia: NEWS!

Posted on May 11th, 2013 - By MummyWhisperer - 16 Comments

  I have NEWS - there have been big changes. Initially it was all rather slow, frustrating and two steps forward and one step back.  My…

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Dangers of positive thinking

My Progress: Fibromyalgia a couple of months on after diagnosis

Posted on Jan 22nd, 2013 - By MummyWhisperer - 19 Comments

  I thought you might like to know how I'm doing with the whole fibromyalgia thing? Lots of people have asked how I am, but it's really…

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Our Norwegian forest kittens

It’s not Spring, it’s Winter – Why ‘New Years Resolutions’ are doomed

Posted on Jan 7th, 2013 - By MummyWhisperer - 11 Comments

Happy New Year 2013 Everyone! It's January and the crazy dieting and resolution thing is going on everywhere.  I don't want to be the voice of…

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Back Pain

A Hidden Pain and Silent Fog: Fibromyalgia

Posted on Nov 21st, 2012 - By MummyWhisperer - 41 Comments

  I have some news. It has good bits and not so good bits, but that's life heh! It explains why I've been a little quiet (but you may…

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Frustration and anger

Doctor’s Receptionists – Arghhh!

Posted on Oct 9th, 2012 - By MummyWhisperer - 9 Comments

One thing sure to make me rant is bl**dy doctor's receptionists and crazy rules about when you can or can't book appointments. THIS IS WHY…

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Tired woman yawning

Exhaustion …. What it feels like

Posted on Jul 28th, 2010 - By MummyWhisperer - 14 Comments

I'm writing this for three reasons.  (Well, I actually started writing it 14 days ago, but have been that exhausted that it has taken this long to…

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