Me

Me

Sunday, 12 May 2013

Treating symptoms wont find a cure:: Fibromyalgia, M.E, Chronic Fatigue Awreness Day

Its international Fibromyalgia, ME, Chronic Fatigue awareness day today.

I have a primary diagnosis of fibromyaglia as many of you will know who read my blog, I also suspect I have M.E, as I fall somewhere between the two descriptions. It doesn't really matter as the list of symptoms I deal with daily are quite bad enough, thank you! I'm going to list them, not because I particularly enjoy having to take note of it all. But because I want to ask a question.

My symptoms
Which despite what the books say, have got progressively worse of the last 3 years - I am ever hopeful that this is as bad as it gets.

Neurological Symptoms
  • muscle spasms:
  • rippling
  • twitching
  • stinging/burning electric shock
  • can only describe as fizzing
  •  wobbly - poor balance
  • Numbness in all 4 limbs
  • Tingling in all 4 limbs
  • clumsy hands (drop things lots) 
  • Impaired distance judgement - trip on steps etc

Over sensitivity to:
  • Sound - high pitched, loud or even whistling hurts (hands over ears hurt)
  • Visual stimulation - my weird eye thing, visual disturbances
  • Touch - even lightest of touches can have me squirming - it hurts

Cognitive impairment
  • Poor short term memory
  • Easily confused on phone (those press 1 for help type things)
  • Cannot remember phone messages
  • cannot manage large complex forms etc
  • Lose words, easily lose words in mid sentence
  • Sometimes cannot think how to write (mental block) 
Other weirdness
  • Restless leg 
  • Insomnia
  • None restoiritve sleep (dont get enough REM sleep so wake up knackered)
  • Tinitus
  • IBS
  • Depression (what a shocker not)
  • sore throat that never turns into anything
I get the above symptoms to one degree or another, often in short bursts on a regular basis. The tingling can last for 5 minutes then go away. the more tired I become, particularly in the evenings,the more severe they get.

Pain & Fatigue
Many folks think it's just a bit tiring having this, or you get sore. as that's the most common descriptions. Pain and Fatigue are a massive factor in my life, but i wanted you to read the other symptoms first. Lets clear up this myth about fatigue:

I am not always tired - YES that's right, im not. What I expereince is:

Post exertion fatigue that's not commensurate with level of activity.

Uhhh you might be thinking - what that means is I tire very very easily - I have poor stamina so while i can appear fine one day and on top form, if i was to try and do the same day in day out for a couple of weeks or even months i would relapse and badly.

Basically its a lack of stamina, a bit like a battery that doseent full charge. I can and do push it sometimes and there are periods of the year where i have more stamina that at others most notably the summer months.

The more i add in to my day or week the quicker i drain the battery.

Pain - the pain is there and a bit like the fatigue its goes from okish to - I cant bear it please make it stop. I have a high pain threshold and I do think to a certain degree you get used to it and it kind of goes in to the back ground and only when you focus on it does it have a shout.

I take pain killers that for me keep the worst of the pain at bay - It does not haowever do anything for the neuropathic and neurological symptoms. 

So finally my question.

If you read the first list - ignoring the pain and fatigue elements first would you be worried?

would you want to find a cure or hope the medical profession might be looking very hard for a cause of all that?

Yeah I would too but you see with an "invisible illness" like mine the medical establishment the ones with power and influence have decided NOT to put all their effort into finding a cure - not what they put their effort into is

treating the symptoms with

GET (graded exercise therapy)
GAT (graded activity therapy)
CBT (cognitive behaviour therapy)
Anti depressants
Pain killers.
Pshysiotherapy

**Most commonly this is offered as an 8 week Pain Management Course.

In other words they are treating the symptoms and not looking for the cause and only treating one aspect of the symptoms at that. This is because  the esteemed wisdom by the doctors primarily lead by Psychiatrists is that all the above stem from a psychological illness - in other words I just believe im ill. and all the physical symptoms are because I believe it to be true.

There is a huge battle going on - to say that there is no evidence to counter these claims is untrue there is a growing body of evidence to say it is a

Complex Auto Immune disorder Pain Pathways
Small fibre neuropathy - Research showing  nerve ending damage
 New Research:  Wired and tired muscles
Update importance of Mast Cells in FMS & M.E Interesting research

Update New researcg looking at Chronic Fatigue/M.E Looking for Biomarkers/Pathoogy

Basically evidence is beginning to point that is an auto-immune disorder that causes the central nervous system to misfire. Not a psychological disorder.

I am not saying at all that,

moving around and and keeping muscle tone is a good thing, or that access to talking therapies isnt needed, because believe me it is. This is a tough illness to live with, with no outward signs except to people who know me well and can spot when I'm "dropping" the term often used for sudden onset of fatigue, triggers any of the above is happening.

But today of all days its time to follow the ball not not the man as they say - focusing on just the pain and the fatigue is missing all the other things. There is no test for it - and thats the problem because  many in the medical world have fallen into the mistaken belief that with no "physical" test it must have its origin in a psychological disorder.

I am ever hopeful that with the growing body of evidence the breakthrough may come and the idea of only treating the symptoms when you have no idea what so ever of what is causing them in the first place is dangerous science.

 I have no problem with the idea of symptom management - based on common sense.
Pacing is important, not pushing past limits, support for depression, a chance to talk - being supported to understand the link between emotional health and impact in physical health.

BUT

would you make someone with a broken leg do star jumps? no because that would be stupid.
So is devising exercise programmes that push people beyond their limits

would you make someone who gets wobbly in their feet and needs a stick for balance get rid of th stick because they just believe they need it? no because that's stupid 
so is pressurising people into pushing past their limits and relapsing

Would you dismiss all the cognitive, neuropathic symptomss and just focus on 1 aspect of an illness?

would you tell someone to push a bit harder and be positive cause well its only a bit tired and we all get tired?

Today is Fibromyalgia and M.E, chronic fatigue awareness day - I'm always aware of it and while I try extremely hard to be positive and get on with living my life as best i can. I appreciate for the people i love and who love me this is not easy, knowing that I have various things to help me get out and about like  my wheelchair is not easy. trying to understand when I appear ok and can do lots then don't appear for a while is not easy.

I still have the hope that one day I will:
  • Be able to work and earn money again in some capacity 
  • Be well enough to not need a wheelchair to be able to go out for the whole day and not relapse
  • That i will have found a good balance and manage to pace sufficiently to maintain a consistent level of activity (bearing in mind what my definition of that is and yours may be different)
and if I Don't manage to get back to paid employment - thats ok too because my value as a human being in not about how much money i earn, its about how i act and how much i contribute as a:
Wife
Sister
Mother
Daughter
Friend
Member of society
Volunteer

No one ever lay on thier death bed and said I wish Id earned more money they are more likely to say I wish id picked more daisies.

But biggest hope is:

That the researchers find the cause and from there find an effective cure. 

If you are worried you have Fibromyalgia or M.E

Make a list of all the symptoms you experience, how often and severity then go see your doctor.
tell them your symptoms not that you think its fibro. if they dismiss you see another Doctor. Don't give up.

Get some support and information here are some links:

 Fibroaction
Fibromyalgia UK
M.E Association
Online M.E/Chronic fatiugue Support Forum
Facebook look uk UK Fibro

Last but not least - i hear you, I believe you and if you need some support just leave me a message.

This blog is written with thanks to all the people who do beleive me, care about me and support me, even when I doubt myself.

Thank you - you know who you all are x











11 comments:

  1. What a brilliant article. Everything you say matches my life.I am grateful I can still get about but I have the fear it will not last!! I have family who support me and family who think I should not let it affect my life in any way. My friends have all disappeared, I am no longer any use to them it seems and I thought I was there not just to 'go out' but to listen and help them in any way I could. I have just moved into a lovely flat, in a new area, and my life will start again. I am managing my pain, my fatigue and my depression and have a wonderful Daughter still at home who takes the mick out of me and my illness but is also by my side all the way. People like you, your blog etc... keeps me upbeat and willing to keep fighting. One day...... lol. xx

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    1. Oh bless you Debi,
      Thank you, Im glad you are coping and wish you masses of luck in your new home. Hope you find some happiness, and new friends.

      yay for our loved ones who keep us grounded

      X

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  2. Well put missus, and you know that if it wasn't for you I'd probably be stuck without a diagnosis ....

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    Replies
    1. :D I still remember poking your elbow and your hitting my ceiling, glad you got one and while its crap we have it.

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  3. Great stuff - am cheering you on from my corner of the Internet. X

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  4. Really helpful & informative stuff (as ever) as my girlfriend has Fibro/Me.....

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  5. I have so many of the same symptoms. Pain is worst, then fatigue. Last 3-4 days, some nasty vertigo. Meh!

    First time here, happy to "meet" you! Love connecting with other #spoonies <3

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    Replies
    1. Hi Shannon,

      welcome to my little corner of the tinernet.
      Oh poo at vertigo, one thing i havent had..but with this weirdness who knows.

      I love meeting new spoonies too

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Happy to have thoughtful, funny or imformative comments..abusive crap will be deleted