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Introduce Yourself Here.....

  • Peter
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3 months 4 weeks ago #28495 by Peter
Peter replied the topic: Introduce Yourself Here.....
Hi Fibro fuzz,

Welcome to the CPA Forum!

Unfortunately being diagnosed with Fibromyalgia is not the end of your struggles. There are far too many in the medical profession who believe it is just a psych disorder and that you should be on anti depressants. I know, I have suffered this accursed condition for many decades, but was only diagnosed in 2001.

There is one thing you have mentioned that many fibros suffer from, which is chemical or drug sensitivity. So pay heed to your body and do as it tells you. Just a suggestion with the drugs. Ask your doctor if you can start on a lower dose and slowly titrate upwards as the side effects diminish, because this might help you. You might find you can get some good pain relief from one of these drugs, but on a much lower dose than what the recommended dose is. So do yourself a favour and talk this over with your doctor.

The one thing I advise you mostly on though, is to educate yourself and take full control over your health. Go to your doctors fully armed with information, knowing what you want, then ask for it. You will find that most doctors are receptive to people who are in control. Don't bother asking for more drugs, because as you know the govt is clamping down and you won't get them. You don't want them, believe me.

Also, ask your doctor to refer you to a multidisciplinary pain clinic in a public hospital near you, because they will teach you how to self manage your pain condition. If you go in there with a the right frame of mind just wanting to learn to live with this condition, you will get the most out of it. It was the best thing I ever did.

As for people believing you. Johnno has something you can print off somewhere on the forum. He'll probably put a copy here for you and you can print it off and give it to family and friends to read. Saves you explaining.

Anyway, good to have you here and remember you are among fellow pain sufferers and we all know what you are going through.

Take care!


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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3 months 4 weeks ago - 3 months 4 weeks ago #28496 by Fibro fuzz
Fibro fuzz replied the topic: Introduce Yourself Here.....
Hi Johnno,

Thank you for your words of support, i look forward to reading and learning more from this site.
Last Edit: 3 months 4 weeks ago by Fibro fuzz. Reason: Addressing the poster

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3 months 4 weeks ago #28497 by Fibro fuzz
Fibro fuzz replied the topic: Introduce Yourself Here.....
Hey peter,

Thank you for your welcoming words and advice, I am very lucky to have a brilliant GP who stood by me when all the specialists said it was all in my head. I will definitely ask about a pain clinic referral, I am keen to try out non medication based treatments though I have very, very high touch sensitivity at the moment so some treatments like swimming and massage are long term goals.

I’m sorry to hear you too have Fibro, but I am glad to have met someone who really understands.

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  • Saffron1
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3 months 2 weeks ago #28514 by Saffron1
Saffron1 replied the topic: Introduce Yourself Here.....
Hi My name is Paula
I have had fibromyalgia for over 12 years..ás well as i suffer with anxiety and depression. Fibromyalgia is slowly taken so much from me . Each year I look back at where I was and what I was able to do and definitely don't see any improvement only the decline of my health and ability to function as a wife, mother, friend or myself. I keep learning and trying to try different approaches to 'help myself' but... can only ever temporarily relive some of my symptoms. I WOULD LIKE A DAY OF FROM PAIN PLEASE!! Rant over.
I am a overall positive person but this is wearing me down. Hoping to find support and give support to others that can relate to this struggle that so many of us face everyday

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  • Peter
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3 months 2 weeks ago #28515 by Peter
Peter replied the topic: Introduce Yourself Here.....
HI Paula,

Welcome to the CPA Forum!

like you, I am a fibro sufferer. I was diagnosed in 2001, but have had it most of my life. So I know just how bad it can get and how it can dog you and blacken your day. Unfortunately, the black dog follows us everywhere and I have found that the only way to keep the damn thing tied up, is to try and keep occupied, so that you can distract yourself as much as you can. And by occupied, I don't mean busy, because being busy usually puts me in bed.

I have volunteered with Chronic Pain Australia since 2010 and been the administrator of the forum since 2011/2012, plus I also do other volunteer work in my town. This helps me remain plugged in and occupied enough, but am able to have plenty of down time to recoup.

The problem with us fibro sufferers, we look so damn healthy and it is easy for others to point the finger of 'bulldust your sick' at any of us, anytime of the week. But yet, inside we are hurting like hell and often feeling very ill too. Not to mention never sleeping properly or much at all, then waking every single morning so stiff and in bulk pain.

Anyway, there is lots of stuff on our website for you to read, so do yourself a favour and read as much as you can. Also get your husband to read some of the stuff too, because it may help him understand some of what you are going through.

Take care!


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
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3 months 2 weeks ago #28517 by Harpy
Harpy replied the topic: Introduce Yourself Here.....
Hi Paula,
Glad you found this site, you will find lots of great information and plenty of understanding fellow pain sufferers, I have many spine issues and a diagnosis of fibromyalgia 9 years. I find the bone aching fatigue of fibromyalgia so freaking draining on the sole, nothing helps ease it, its relentless .
Anyways welcome and read up,
Cheers
Harpy
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