Struggling

All your fibromyalgia experiences, questions and answers.

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Re: Struggling

Postby ixel-chick » Sun Mar 15, 2015 9:30 pm

Just wanted to say "Welcome!" to Sue C and Symiranda!
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Re: Struggling

Postby juliecoops13 » Sun Mar 15, 2015 11:35 pm

Me too.....hate this awful pain and how it affects my family......
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Re: Struggling

Postby juliecoops13 » Sun Mar 15, 2015 11:38 pm

Do most of you still manage t socialise in the evenings ? I haven't been able to go out in months as the pain is so acute my morphine knocks me out....want my life back :yikes:
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Re: Struggling

Postby Butterfly8588 » Mon Mar 16, 2015 1:38 am

Hi Julie,
One thing I've always enjoyed is writing and I go to a class once a week for 2 hours in the evening. I've done this for many years but my fibro affects me so badly in regards to brain fuction (or lack of) that I can't do it the same as I used to and its so frustrating. I've been skipping a lot of classes this term cos I've been to tired or in to much pain to go. It's so demoralising I sometimes think I should just give it up. But the stubborn part of me sees that as another victory for the fibro so I'm trying to stick with it!
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Struggling

Postby divingforPearls » Mon Mar 16, 2015 10:49 am

I found some really useful info on the University of Maryland Medical Centre website, to do with what fm is and what is happening in the brain with hormones.
"Fibro is a result of the effects of pain and stress on the central nervous system that leads to changes in the brain"
1. Severe stress leads to long term over-exposure to stress hormones - that is, noradrenaline, produced by the adrenal glands (ever heard of adrenal fatigue?). An over-stimulated stress response is implicated in fm. Which is why it is linked to PTSD.
2. It has been found that people with fm have lower amounts of serotonin, dopamine and endorphins; all the happy hormones. Endorphins -AND THIS IS REALLY INTERESTING - are natural pain relievers produced by the pituitary gland which interact with opiate receptors in the brain. "MEDITATION relaxes the brain and changes brain chemistry, placing it in an alpha state ideal for endorphin production."

So, the outcome of knowing this is to try not to stress yourself out! I know how easy it is to rage against the injustice of this pain, all the things we cannot do, all that we have not done over the years, the sadness and injustice of having our families having to also cope with us in pain, the wasted days and years, the pain the pain the pain!!!!AAAARRRRGGGHHH!!!!!! Yes so easy to get worked up over it!! But... what this research says it that stressing yourself out is not going to help! But meditation may help, so I am going to try and do that 3 times a week. (But first I've got to type up some minutes, do all the housework, chop some wood and make it all feel NICE in order to meditate! Those things do make me exhausted, so I will go slowly and try not to stress myself out about my slowness! I try and do it all at once at then collapse crying. Not helpful!) I figure that even on my worst days, I can lie on the floor and try not to think! I USED TO BE a yoga teacher 20 years ago before all this, (and even I have let it all slip - I was -ahem- overdoing it which led to massive flare ups, which has led to a fear of doing yoga and by extension, meditating; it all got unnecessarily stressful!) so I know a bit about meditating; don't stress yourself out that you're not managing to do it, it takes training over many months; just breathe consciously at first and try and let the thoughts go. Or join a class!

Anyway, the long and the short of it is; stress= bad ; relaxing=good. Good luck!
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Re: Struggling

Postby naomi rachel » Mon Mar 16, 2015 11:04 am

I know how you feel,I'm only 34yrs old and used to be fit and healthy,walk for miles with my husband.But over the years I got worse after a hit n run and then a car crash with my mother in law.No one knew what was wrong with me,they all thought I was putting it on,till a few weeks ago I got diagnosed with fibromyalgia.The pain I have every day makes me want to give up and on top of that I'm having to fight to get my p.i.p and get off the work part of esa.I fought to get my medication and I'm still fighting for them to up my dose as it's not working.But my husband is my rock,so is my stepson if it wasn't for them I don't know where I'd be.Having found this forum makes me feel like I'm not in my own and I'm very grateful.xx
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Re: Struggling

Postby Zia2014 » Mon Mar 16, 2015 2:24 pm

Symiranda wrote:yet the only thing I took that help was 5-htp with melonin, for some sleep and some relief ...


Hi, did your GP prescribe this to you? I'm keen to try melatonin as if I can get *some* sleep it would be a real help.
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Re: Struggling

Postby ixel-chick » Mon Mar 16, 2015 6:39 pm

divingforPearls wrote:1. Severe stress leads to long term over-exposure to stress hormones - that is, noradrenaline
2. It has been found that people with fm have lower amounts of serotonin, dopamine and endorphins


I had no stress when I developed fibro, although my body had been very ill (including infections), so I guess it's possible to claim that my body had undergone severe stress. :-D

Meds I'm on boots seratonin and norepinephrine (noradrenaline):
Cymbalta or Savella. These medicines increase the activity of two brain signaling chemicals--Serotonin and Norepinephrine.

Quote from https://www.facebook.com/notes/fibromya ... 4946778209 as he seems to have a nice way of explaining things in a down-to-earth kind of way.


And big welcome to the forum to naomi rachel!
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Re: Struggling

Postby Gemm » Tue Mar 17, 2015 9:56 am

Atkin...
I understand your frustration. Fibro is a condition that takes time adjusting to.
It's an incredible learning curb with how to transform your life, yet it's necessary for these changes to occur.

I went through 21 months of intensive therapy to understand 'why me'.
The most important thing you could do for yourself is learn how fibro can be your friend. It's not easy living with this. Yet it can offer periods of protection against situations that you just don't need in your life.

I don't know your story, nor will I claim to know what the best steps are for you. It's a personal journey that others can support you through. Those who love you will adjust with you to support you. Yet you're the one who'll need to learn to love YOU the most.

Diet is really important, as is moderation of day - to - day activities. It's about slowing down, which in this day and age can be challenging.
Getting into nature is an amazing aid to your pain and fatigue (mental well being). And low impact sport such as thai chi/yoga/meditation is marvellous.

Try not to carry anything heavy, and work towards less emotional/physical stresses.
Also, read up about the spoons theory if you haven't heard of it. And find a good doctor/consultant who has a good understanding of fibro.
I saw a specialist for 3 yrs. Prescribed drugs may or may not work. My biggest aid was a psychotherapist and and low dose of citalopram (SSRI).

AND don't forget to treat yourself to spas or relaxation, like massage.
Your job will have an impact on your life style/fibro so you may or may not want to look at other options of careers.

Support is key ♡
There are loads of people who experience fibro similar to you. Maybe find a support group. Even one friend who lives with fibro could be the one person you need to help you over come the challenges you face.
You're not alone!

It takes time to adjust xx

Love and hugs ☆
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