I'll show you mine...show me yours?

Posted by Megg_Ellis
Megg_Ellis
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on Wednesday, 28 March 2012
in General Blogs

Two weeks ago I was diagnosed with a disorder called fibromyalgia, a chronic pain and fatigue syndrome. It's incurable.

This makes me look at things differently. I've advocated the right to knowledge for a while and even started my own #KnowledgeShare Twitter trend, where I share interesting facts that many people don't know about. 

And when it sunk in that my whole future may change, that things might just continue to deteriorate - I realised how little I or anyone else around me knew about it. Some call it an 'invisible syndrome' because it has no known cause, but in SA, I think it's just plain invisible to the public. This got me thinking: what else don't we know?

There are so many issues, so many topics, so many causes, that many of us simply don't know about. And of course we can't expect schools and universities to clue us in about everything.

But we can share knowledge with each other. 

I may have just introduced you to a syndrome you never knew about. It also goes beyond pain and impairs your cognitive abilities - I literally have days when I can't write thoughts down and I take a few seconds to remember my loved ones' names. 

Now I'm giving you the chance, with this post as a platform, to tell me about something - a topic, issue, cause, whatever - that you think people should know about. 

Excited to hear from you. 

Tata for now

Megg_Ellis

When I see the process rundll32.exe, the song Tricky by Run DMC starts playing in my head

Comments

Wolfe
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Wolfe Thursday, 29 March 2012

Hmmmmm.....

It sounds like a very interesting disorder and from what I can see it can go away in the same manner it arrived....for no reason.

Looking at the possible causes and the fact that there is no physical cause as such, other than the brain deciding to induce pain, it can stand to reason that it's all in your head (as insensitive as it may sound).

This is however good news.

My advice?

If your brain is capable of generating a disorder, then it is capable of healing you as well.

You need to convince your brain that everything is cool. How?

As tacky as it sounds....Positive Thinking.

You need to spend your days doing the following:
- Fitness program
- Visualisation & Positive Thinking
- A psychological assessment won't be a bad idea, perhaps investigate Cilift as a start?
- Be grateful.....you could have just as easily been diagnosed with cancer and given 6 months to live....a valid reason to go through a phase of self-pity.

Sounds so simple....it's like The Secret....everyone will tell you it's a load of bullshit, but I bet none of those people are able to initiate positive thought for the majority of their time as we are all so conditioned to survive and this means taking into consideration defending ourselves against threats, which in turn means that we think about negative things most of the time.

So, I guess what I am saying.....Chin Up and don't be lazy!

But hey....what do I know.....

Megg_Ellis
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Megg_Ellis Thursday, 29 March 2012

Fibro

Hi Wolfe

Thanks for the suggestions, but one of the top myths about fibromyalgia is that it's all in our heads. There's scientific evidence that shows we process pain differently to normal nervous systems, we also lose grey matter in our brains a a faster rate and most sufferers share common medical histories and syndromes.

I have been positively thinking for a long time, but my body literally turns against me and painkillers only dull the pain. Because of the tightness in my muscles, blood and oxygen don't get to my brain as efficiently, hence the bad days where a struggle to remember things and even have to pause a few seconds to remember my boyfriend's name. My journalistic skills are also heavily reduced.

My doctor is working with me, I have been on Venlor XR for months and my dose has been increased to 300mg to help with serotonin levels (which are also responsible to for how your body processes pain), as well as ibuprofen and some sleeping tablets. While last year a lot of my fatigue was from depression after my best friend's death, I can feel the difference in this fibromyalgia episode - I want to work, I want to go out, I want to exercise - but my body is tired I struggle to balance and my migraines prevent me.

However anxiety does contribute as it imbalances the body as a whole, and my psychologist and I are trying to deal with it :)

Thanks for your suggestions and interest.

By the way, any topic you would like to add?

ShackledMuse
ShackledMuse
Cheryl-Anne Roelofsz, also known as Shackled Muse, is a South African blogger/wr
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ShackledMuse Monday, 02 April 2012

If I may add...

I thought the whole Positive Thinking and Secret thing was an old wife's tale (The Secret franchise is very commercialized tho, so maybe don't just buy the book and think that it's gonna change your life.)

I started reading up about the Law of Attraction, and how it's so much more than just thinking happy thoughts; about how the energy that you focus on and put out into the world, is the type of energy you'll receive.

Most aspects of it is still a bit too much for me to grasp, and I have to read the articles more than once... lol.

Google Melody Fletcher Deliberate Receiving Blog. She explains it much better than me. :D

Charmed
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Charmed Thursday, 29 March 2012

fibromyalgia

Haven't heard about this disorder until reading your post. I don't know what to say, but Wolfe pretty much covers it.

Something that I'm not sure many people know about is "CPA" - continuous partial attention, which I think a lot of us do without knowing. It's a term coined by Linda Stone, and it is defined as "the process of paying simultaneous attention to a number of sources of incoming information, but at a superficial level." (It isn't the same as multi-tasking).

We might be browsing the web, replying to email, looking at our Twitter feed, opening links but not really paying attention. I know I'm 'guilty' of it.

You can read more about it here: http://lindastone.net/qa/continuous-partial-attention/

Megg_Ellis
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Megg_Ellis Thursday, 29 March 2012

Agree

I totally do this. Even in lectures I write down ideas for blogs and newspaper articles from what is mentioned or thoughts I have in reaction to things I see, hear, read. It's not like multitasking, it's like having a subconscious process running - after all, the brain is like a computer.

Mine has a few bugs :P

Thanks for the info, really interesting.

riiaan
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riiaan Thursday, 29 March 2012

Leishmaniasis

I am part of a technology group that runs computer simulations to try and find cures for diseases.

One day I saw they started working on a tropical disease called Leishmaniasis. I dismissed it and thought why don't they get back to something serious like cancer.

As weird luck would have it, that week on Nip/Tuck they dealt with a case of Leishmaniasis. Turns out it is a pretty bad ass disease that can leave you disfigured for life.

I am now running full steam with the Leishmaniasis progam.

Megg_Ellis
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Megg_Ellis Thursday, 29 March 2012

Leishmaniasis

Never underestimate the importance of your work. I read some effects are diarrhoea and vomiting. Since Leishmaniasis comes from the sand fly and is located in mainly third world countries, I'm sure the disease can be the difference between life and death in poverty-stricken circumstances. Dysentery is a major cause of child mortality in poor countries. Your work may help those whose problems are ignored by bigger corporations. :) Thanks for the info

NetizenSA
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A geek who loves the net, games and all things geeky.
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NetizenSA Thursday, 29 March 2012

Sleep

I noticed that they found you could induce Fibromyalgia like symptons by depriving people of stage IV sleep.

You said you take painkillers right? They mess with sleep cycles and could actually create a negative feedback system.

Just a suggestion, hope it helps!

Jawellnofine
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Jawellnofine Thursday, 29 March 2012

Opinion

Hi Megg_

My GF was also diagnosed with FM a while back. when she went to another doctor (one who is a research doctor,) the whole thing was dismissed as FM is too wide to be meaningful to be of any value.

She was then diagnosed as suffering from Extreme Anxity Syndrome :p

In my subsequent research I found out that the two subjects are quite 'newish' and thus still full of ambiguities and suppositions.

Anyways, I agree with you on the whole positive thought thing; most times one is sick even when one is positive.

By the way, the GF was put on anti-depressants but has subsequently been taken off as she still suffers from all the syptoms...being human is not for sissies ;)

Megg_Ellis
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Megg_Ellis Thursday, 29 March 2012

Diagnosis

I've had health issues for the last few years, and while I have dealt with depression and anxiety for seven years, it was a year and a half ago that I started suffering from fatigue. Towards the end of last year the pain was unbearable and I had migraines which made it hard to even speak. A specialist after my glandular fever went away told me it may be chronic fatigue syndrome. But because pain is more prevalent in my life I asked my doctor if it could be possible as I psychologists have identified no disorders and blood test results showed no deficiencies or abnormalities.

I do notice that my anxiety is linked, much like my acid reflux is linked with anxiety. Difference is, once upon a time I could work under extreme pressure, and now, with less pressure my body is exhausted. While I deal with pain daily, longer episodes tend to trigger after particularly emotionally stressful events.

I am actually a very jolly person as it is a way of coping with the multiple difficulties I've faced in life - I find joy in tiny things like flowers or items in the store - but even on good days where I feel emotionally happy and anxiety-free, the pain lingers. Nowadays the greatest source of my anxiety is that I'll be too tired to fulfil expectations.

I do hope your girlfriend gets better. She's lucky in there are many ways to overcome the disorders :) I'm glad she doesn't have fibro, I wouldn't wish it on anyone. The scariest part is that doctors are still figuring it out, and some results suggest it can be degenerative in terms of accelerating grey matter loss in the brain. So the forgetfulness and difficulties thinking can actually get worse.

I'm trying to exercise my brain every day though to keep it in shape. I still plan to use it for a while :)

Jawellnofine
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Jawellnofine Friday, 30 March 2012

You go girl

It is a dibilitating malady irrespective of how one looks at it.

As with anything in life: one foot in front of the other get one there.

Keep smiling

Syllable
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Syllable Friday, 30 March 2012

Fine and functioning

Hi Megg
I was diagnosed with Fibromyalgia years ago. And by years I mean decades. Initially it was called growing pains, but it persisted, although to a lesser extent.
A previous course of antidepressants I used helped a lot and even though I have stopped taking that medication, the pain has not returned as bad as it was before. Together with several other medical maladies some days can really be awful.

The worst bit is when you fear that it's all in your head, because there's not physical manisfestations, there are no tests to detect it. But if you're a mentally healthy and well-adjusted person, which, despite fitting in nicely with the rest of us in the shout box you seem to be ;) know that your pain is real. But that shouldn't stop you living your life completely.

ShackledMuse
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Cheryl-Anne Roelofsz, also known as Shackled Muse, is a South African blogger/wr
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ShackledMuse Monday, 02 April 2012

An unknown cause

The Great Pacific Garbage Patch..

I knew it existed, but until I did research for a client (and wrote 4 - 6 articles for her about it) I never imagined how bad it really is.

Wolfe
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Wolfe Wednesday, 04 April 2012

An exhaust fume...

Perhaps my Positive Thought comment stole the limelight of my theory.

If the brain can cause pain, then the brain can take it away. That's all I am saying.

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