The more blogs i read the more angry i get that people who are managing to work and hold own jobs have to call in so often as they are in a flare up and the people who are at collegeas and uni s doing courses they have to have so much time off missing lectures etc it is awful that employers and such really have NO IDEA what fibromyalgia is even if we dont work in our daily lives if we use a stick at times or a wheelchair and people see you and think oh she must have sprained her ankle or something and you tell people no no it is fibromyalgia and they do one of two things say oh get better soon bless them or what is that then o r they think it is some sort of contagious disease that i caughtfronm being in the middle of nowhere

I try noyt to get annoyed with people though as bless them i had never heard of it before i had it nor had any of my family or friends

I think it needs to be alot more recognised like M/E amd M/S or Diabtets etc we all know what they are straight away we have all grown up with these words but not FIBROMYALGIA so why hasnt it ???????

we had same thing with my grandson he got STREP B meniengitis at 6 days old nearlymdied but we had never heard of that and thats another disease that is put in the shadows WHY ???

So WHAT can we do to get people to recognise it ????

love to you all diddle x

19 Replies

  • I agree, we need to raise the profile of Fibro. I was told that the forum opened in January and now has 2600 members. I think that alone could get us an arfticle in a newspaper or magazine! Difficult because some will always want to remain anonymous. Christine x

  • i agree diddle , :) xxxx

  • diddle I think if we all write to our MP or email him with a Fibro explanation and sign it this might help towards it do you think ? need some backing from up top some were i think soft hugs to all))) Allan .

  • good idea allan ,but which mp ?

    we are all from such different places lol

  • Local one Lynz if we get enough people to email them they might do something about Fibro ? Allan

  • you are right Diddle, i had noticed that too. yes there is far more that we can do to make people aware of fibro. i am not ashamed or embarrassed any more to admit i have disabilities like fibro, heart problems, arthritis and spondilosis. thyroid problems seem to be as common as a cold these days but apart from those on this site, how many people have you heard of with thyroid? one thing we can do is use a "badge" instead of a picture on our social network sites. if people want to know what it is they will either ask or look it up. there is also 11th may i believe is fibro day when we could wear a badge and bombard our mp on fibro day, perhaps get a local paper to put a write up in about fibro. if i get any more silly ideas just tell me to shut up! have a good day soft hugs xxx :) :)

  • Hi its the 12th May x x x

  • it is very hard for all of us i am waiting for an appeal for dla in September they are saying i can walk 100meters which i cant as i have hip pain and lower back also my knees buckle without warning, i have just had an xray and it is showing that it is abnormal i will get a copy of results and send that to appeal as there doctor said my knees are OK and he hit my knees with a little metal hammer the pain was so bad. he was pulling my arms and squeezing them as i have all 18 points they are un real. i have just been given a tens machine from chronic pain clinic and it has helped on my back i have now purchased a tens machine i am just waiting for my acupuncture for stress. do you go to support groups they help and do fundraising to make ppl aware.

  • what a nasty person! what did he think he was doing? I would sue him for pain and suffering! write a letter to the people who organised him and tell them how it made you feel! I hope you are feeling a bit better now honey. lots of soft hugs xxxx

  • Thankyou or all your comments think like allan says we all need to go to our local mps and really push for this fibromyalgia to be recognised as much as diabetes and other such illnesses we are just as entitled to syuff as anyone else just because we dont look ill doesnt mean we arent !!!!!!

    love to you all and i am now writng to my local mp about fibromyalgia and how we seem to e discriminated against especially when it comes to claiming benefits etc

    good luck and hope you all do the same love diddle x

  • Hi diddle, all this makes me mad too.

    Some days i can walk (still in agony mind), and some days i look like i am drunk.So i will never go anywhere on my own apart from up to school.

    Ms isnt that widly known though either, i have a friend who before she had to go in a wheel chair two people shouted out at her 'fancy drinking at this time in the morning' I couldnt beleive as you could clearly see she had MS. Even now she is in a wheelchair, her brother had an argument with her and turned around and said ; god you would think there was something up with you you are always moaning' I was livid.

    Even when i found out i had ME aswell as fibro, somebody said 'my zumba instructor has ME and she dances every night'.

    But they wont see what that instructor will go through at home just to be able to do a job like that, will they.

    hugs, kel xxx

  • I really do think people are so flippant they do not listen properley to anything such as us say......I have fibto, M.E. osteoarthiritus, spondylosis of the spine and I would love to do Zumba............ in my mind yes.... but not in the real way.


    Sue x x

  • yeh in my dreams!! xx

  • Haha, my partner says my body and legs jerk and kick out in bed so i am maybe dreaming that i am doing zumba lol.xxxxxx

  • My husband says the same!

    I do do Zumba, every 2 weeks, I love it but need the week in between to recover!

  • I aggree Diddle,it's so frustrating i don't know how to explain it when i have to go and see my boss, i don't know if i can return to work but the thought of claiming dissability etc terrifies me as i hear so many horror stories about it,just thinking about it is exhausting! xx

  • TBH MPs cannot push through awareness unless there is a lot of political pressure for them to something.

    One thing we can all do is use the word Fibromyalgia or Fibro. I know a lot of people with Fibro get fed up of people not understanding what it is, so they say they have a form of rheumatism or "something like ME" or something similar. But that helps keep awareness low.

  • yes that is so true we do say things like it is like me or rheumatism where what we should say is what it really is i never thought of that but yes you are right there thankyou love diddle x

  • Last year on Fibromyalgia awareness day a child in our school put together a presentation for the rest of the school as her mum has Fibro, maybe you could do the same...just contact the school.

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