What is the most frustrating or difficult aspect of living with fibromyalgia?

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Patients Fibromyalgia

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• Community manager
Posted on
Good advisor
Hello everyone,

Fibromyalgia is a very individual disease and affects everyone differently. What is the hardest part to deal with in your daily life? The pain, the fibro-fog, not being able to work or do the gardening or maybe that people don't understand what you are going through?

Share your experiences and struggles here.

All the best

Beginning of the discussion - 26/08/2014

What is the most frustrating or difficult aspect of living with fibromyalgia?


Posted on

Aches all over my body & feeling 61 not 31!! 

What is the most frustrating or difficult aspect of living with fibromyalgia?


Posted on

I totally agree Corinne!!! It feels like I am twice my age! And then the fact that most people don't really understand it, makes it even more difficult. Also it has become more of a challenge to be active with my kids. We used to cycle a lot, but we don't do it as often now. Although I do try to stay as active as possible.

What is the most frustrating or difficult aspect of living with fibromyalgia?


Posted on

For me its the fact I can't talk about it my family don't understand really they do try my partners can but hes sick so I'm his full time carer which can be hard to do everything that's needed to do when your constantly tired the tiredness gets me most x

What is the most frustrating or difficult aspect of living with fibromyalgia?


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I find the pain, exhaustion and the feeling ill constantly a struggle but mostly I struggle with the fact that I feel my life is over, going from being active and always on the go to being unable to leave the house most of the time.  Nobody understands unless they have an invisible illness.

What is the most frustrating or difficult aspect of living with fibromyalgia?


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I find the hardest part of dealing with Fibro is not being able to just jump in my car and drive to see friends, watch bands or see family!!! I also find it hard that I can't go out when I want and can get around easily!!! My ex sister-in-law has it as well so we can talk about what it's doing to us - she's just been on an intense education course for the last 3 weeks which is geared up to help her with exercise, relaxation and dealing with it all - I did one that was for 6 weeks - 2hrs once a week!!! The one she has been on looks as though it's more effective and informative!!! XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX 

What is the most frustrating or difficult aspect of living with fibromyalgia?


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The hardest thing for me is that no one can see fibromyalgia and I feel like people look at me as if I am malingering. I would love to have the old me back and be able to all the things I used to do, running, going out at weekends, having late nights, etc. 

What is the most frustrating or difficult aspect of living with fibromyalgia?


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The hardest part of fibro for me is not being the mum I was to my 3 amazing children (13,9&8) they are so good and understand but that doesn't help the guilt I feel, I also find it hard that so many people don't understand and think because it's not visible to them there is nothing wrong I feel more like an 81 year old not 31 x

What is the most frustrating or difficult aspect of living with fibromyalgia?


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Feeling useless and hate not being able to work.

What is the most frustrating or difficult aspect of living with fibromyalgia?


Posted on

Hi was diagnosed in 2013.i now have to use a mobility scooter on bad days.just five years ago i was a qualified football coach and ran boys and girls teams and also mens teams. Im also a former businessman had two public houses but illness and divorce ruined everything. I spend 90% of my time in bed. 

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