Hello Fibro sufferers: Would like to... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hello Fibro sufferers

160622 profile image
9 Replies

Would like to support other sufferers as had this condition for 30 years, I was 23 when symptoms started , diagnosed 1999, had virtually every symptom associated with Fibro lost jobs, unable to claim benefits and struggled over the years but I keep going and in my case some severe pain has eased , my body doesn’t throb all over now but I live with it, hope I can help with tips and understanding.

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160622
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9 Replies
M0AL61 profile image
M0AL61ModeratorVolunteer

Hi, and welcome. Like yourself I have also suffered with fibro for 30 plus years. We've no other option other than get on with things. x

160622 profile image
160622 in reply to M0AL61

Trying to be positive and looking after yourself is a big factor , there are lots of us out there , meditation really does help , I don’t take painkillers anymore x

Kitten-whiskers profile image
Kitten-whiskers

Good morning, welcome to the forum. So sorry you have had to suffer 30 years, sounds terrible, but glad things have improved xx

160622 profile image
160622 in reply to Kitten-whiskers

Thank you , one day at a time , no painkillers I am working again and being positive, meditation really does help xx

Kitten-whiskers profile image
Kitten-whiskers in reply to 160622

Thats fantastic, I went a long time with no pain killers, then had a massive flare up because I over done it, its such a cruel condition, that is invisable. I may get back on the meditation when the flare calms down : >

Nel1961 profile image
Nel1961

Any support would be good. I was diagnosed a few years ago but told I’d had it for many years. I seemed to roll along with ups and downs. I was put on antidepressants which where to help with the pain. I went 1:1 sessions and group one. I learnt about mindfulness which really works for me.

At the moment I am having big flare up, I don’t know what to do..... I feel scared and lonely. In pain and my mind shattered.

Nel

160622 profile image
160622 in reply to Nel1961

Hi I know exactly how you feel and I too have had counselling and tried all sorts of therapies , the mindfullness is brilliant and really helped me through depression I still put what I learnt from it into practice every day. I think with Fibro a big part of managing some symptoms is keeping the body calm totally taking your mind to a better place, I think over the years I’ve trained my brain to ignore the pain and as we do often get told “get on with it best you can”. I also believe gentle exercise is a must as we tend to want to sit due to pain and fatigue, I’m not saying it’s easy either but we have to keep moving somehow as well. My life has been a rollercoaster living with Fibro and going through the menopause didn’t help , my mental health suffered badly and no one listened so if I can help anybody going through this I will. Please don’t be scared , easy for me to say I know but you will get through this flare and you will beat whatever Fibro is throwing at you at the moment , keep warm , meditate every day and look after you, that is a must xx

Nel1961 profile image
Nel1961

Thank you..... I have done a formal meditation yesterday and will again today.i am quite mindful in my daily routines, I keep pottering around the house doing the most of the day.... meals, fire ect. I find sitting or laying for long spells make the pain worst.

I am use to small setbacks weekly and daily but not been this ill for along time.

Today am going to walk down the street for some much needed fresh air.

Thank you for the chat...it seems everything I have learnt is locked away

Regard Nel

160622 profile image
160622 in reply to Nel1961

You seem to have some positivity so that’s a good thing , when Fibro gets us it’s hard to cope, my last really bad spell lasted 3yr, menopause as well , I suffered with things I’d never had before, had no money for 3yr , turned down for PIP I was a mess and couldn’t fight it anymore, I just kept thinking is this how my life is going to be , I ended up on Mirtazapine which helped straight away, I’d lost 2 1/2 stone in weight and soon put weight back on 😀 I was on the way back up at last , I do feel let down by doctors and government because iv always tried to work and I knew I couldn’t but would get back to work eventually and the help wasn’t there, but iv done it I’m beating it again I’m kicking fibros ass lol, I’m looking forward not back as looking back depresses me. Keep up the walks , I do take Vitamin D every day , it’s helping, and keep in touch don’t suffer on ya own , keep talking, here if you need help xx

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