To wish there was more understood fibromyalgia < rant alert>

[PiperIsTerrysChoclateOrange]

I'm a sufferer, it means I can't make plans or can't commit to plans. I'm often forgetful and have poor concentration. That if I'm not having a fibro fog or feeling so exhausted that I struggle to do anything.

I have 2 friends with this, both previously high achievers (well, higher than me!) and this illness has seriously impacted their lives. They both had to give up reasonably well paid jobs, can't book holidays because they never know if they'll be well enough to travel and just day to day stuff like going to the cinema or even out for a meal can be a real ordeal. They spend a lot of time researching their condition, but nobody has any real answers.

The lack of understanding from most people, even doctors, is enormously frustrating. A former colleague of one of my friends has said things like 'oh yes, I have a bad back and feel tired a lot but you've just got to get on with it, haven't you?'. A bit difficult when some days the muscle fatigue and pain is so bad that you struggle to even get out of bed...

TBH I'd have more sympathy if there weren't so many 'awareness' postings on Facebook with their butterflies, rainbows and 'people just don't understand me' type of ramblings. It's the same with Autism.. someone's always got a jigsaw tattoo on their arse to spread the word. I absolutely know that Fibromyalgia exists but I think the trend for 'informing' people about it using social media lowers it's credibility (as do those people who insist on diagnosing themselves)

My ace MIL has it and tbh I do really struggle to understand it.
I know its not her fault but she even had to miss ds birthday because she was tired :(
Can I ask if diet helps any of you?
One thing I struggle to reconcile with it is MIL diet is awful, she eats too much of fatty things, drinks too much, also has type 2 diabetes that she is not controlling at all. Part of me feels that if she ate healthier etc she might feel better but its like banging my head against a brick wall.

Should add I only get so annoyed (in my head) because I love her and consider her a great friend

I get annoyed (in my head) by sufferers who don't help themselves and sadly the support groups seem to be full of people who like to moan they have it but don't want to do anything to help themselves have a manageable quality of life.

I do manage it pretty well and hold down a job, but that often wipes me out and that all I need is sleep.

I can't be part of any of the support groups, I found them to be depressing places full of anger and bitterness, totally not the right kind of environment for someone who wants to learn to cope and get on with things.

I do understand why people post a lot about fibromyalgia, when you have specialist doctors not taking you seriously, and signing you off because fibro was mentioned, ignoring the fact that you have two other pain causing conditions that you need some help with, after waiting half a bloody decade to get the referral to see this doctor in the first place. It's frustrating to not be understood by those who should get it, nevermind by family and friends and random people.

You spend a long time being told "it's in your head" and to just deal with it, and that it can't possibly be that bad, that you actually begin to doubt your own sanity, you want people to confirm for you that actually you are ill, that you aren't making it up, because you sure as hell feel ill and you don't want to feel like that, and you quite liked life before you started this weird is it real or isn't it real illness, that nobody quite believes in, unless they too have it, and then you wonder if you are all just insane?

I found I was in the position of working and sleeping, nothing else. I've since gone part time (had to leave my job, take a few weeks off to recover then started applying for jobs) but it was worth it.

I think the worst thing people tend to say is 'but you look so well' - they wouldn't say that to a person with diabetes.

I also struggled with support groups. There is a good thread on here, with lots of positive people but I can't remember the thread title - I think it was something about the spoon theory.

I have it along with RA. Just wondered if others have suffered from bowel issues with it?

I have it cormorbid with numerous issues.

Bowel problems go along with many of my issues!

i wish they would investigate causes more to be honest. most people i know with it were later diagnosed with other treatable conditions like hypothyroidism (shockingly badly treated in uk), vitamin deficiencies (b and d mostly) and polymyalgia. years of being fobbed off

Mine started after some vaccines I recieved as a teenager. Pretty much within the week.

Yep, both irritable bowel and irritable bladder are common with fibro and I have both.