People think Fibro is not painful

Quick question. At work today someone asked why I was going part time. When I mentioned I have Fibro and have paid they said Fibro is not that serious, it's part of ageing and not anywhere near as painful as other conditions? I wished I could have given them my pain for a week just to feel what it's like.

Unfortunately for over 10 years I had a GP that didn't believe that Fibro existed. Then I changed GP's and got referred to the hospital where Fibro was confirmed. I have struggled now for over 12 years to go to work full time. I'm now 60 and lucky enough to have a deferred pension that I can take which is allowing me to go part time. But I have had so many times when I've been in absolute agony struggling to go to work that I crash at the weekends and can't do anything.

19 Replies

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  • Sorry that should read I have Fibro and have pain.

  • Grrrr 😬😬

    By the way, you can edit your post by pressing the arrow next to reply Then edit 😃

  • Hi feelingtired welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

    You should have asked them if they knew what chronic meant & then, told them fibromyalgia is classed a chronic pain condition, i wonder why, that may have had the desired effect 😉

    I worked full time, then part time & then retired due to my health but I struggled so much the last 2 or 3 yrs I worked & constantly juggling work & sleep was like working full time, so know how you feel my friend.

    Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

    fmauk.org

    Peace, luv n light

    Jan xx

  • What is the mother site please.

  • Our mother site is where you will find lots of information about Fibromyalgia. Click on this blue link to take you there:

    fmauk.org

    Hope this helps

    Lu x

    Admin

  • Good evening feelingtired and a very warm welcome to our very friendly group.

    Yes I sometimes wish those who don't believe or understand could live in our shoes for a month or even a week. I am glad your able to take part time work. I think you more than deserve some you time at long last .

    Mo xx

  • I wish I could, I'm finding it so hard to do my job lately, however my partner doesn't understand what I'm going through, just thinks I'm exaggeratingredients

  • Hi feelingtired.

    Welcome to best on line place to get support for Fibro. People can be crass and ignorant but we forgive them for lack of knowledge and compassions.

    You are one in many thousands if you has sustained paid employment. You are clearly a determined person. I am sure you have heard of PIP which may help financially should you get an award. GPs are not miracle workers they can not know everything. The years of pain waiting for confirmation makes us more positive to get the help we need! Just ask what ever you want on the forum someone will come with feedback. If you want real contact head over to mother site fmauk.org and look up support groups.

  • Sorry what is PIP?

  • It is personal indepdence payment you apply through DWP it succeeds old DLA (disability living allowance)

    If you want to claim I urge you to look at Benefits and work website and register for email updates.

  • Yes then you feel guilty for wasting the weekend, I know exactly what you mean. X

  • Hi there Hitchcocktm Welcome to our great and informative group. The mother site is a place filled with a wealth of information. fmauk.org. Maybe it would be a good idea if you wish to ask any more questions to please start a post of your own thank you. Please feel welcomed

    Mo

  • People and their opinions eh. Stupid many.

  • I was diagnosed in 1999 right before i turned 20 i belive and i honestly cant remember life before pain. Its invisible to others but very real to us. I wish people would just understand

  • Hi feelingtired

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read this my friend and there is a core of people out there who do not suffer in the way that we do and it really is difficult to get them to understand how much pain we are in.

    FMA UK do a series of printable booklets that can help explain to others about Fibro and how it affects our lives. I have pasted you a link to the page below:

    fmauk.org/information-packs...

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Hi ken thank you very much for your kind words. It is true that most people will never experience the physical pain we endure everyday. Not to mention the mental,emotional,social and economical strain it puts on our lifes and the lifes of our children and spouses.I belive i have educated my loved ones very well but I also belive they forget Im ill wether i look ill or not. Unfortunately I have other issues that take care of that part so i look ill. I hope one day our doctors will become more familiar with fibro and stop using it as a dumping ground. Ive had alot of my illnesses go untreated because the doctors blame everything on fibromyalgia.

  • Good luck my friend.

  • And if you are like the rest of us, the weekend, unless you are totally retired is when you do your shopping, etc. That kind of puts a lump in that carpet...

    Sorry for the reaction you got. unfortunately, it is normal for those that know little about the disease. I have even thought that in the past... Hope you are feeling better

  • Seriously?!

    People need to research before they even comment on things they do not know about.

    I am 25 and I went part time 2 years ago as my fibro effects me pretty bad. I am in awe at people who work full time or have children. As I struggle on my own with the dog to even exist half the time.

    Pay no attention to idiots x

    Sending soft hugs xx

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