Here I am barely 2 weeks after diagnoses and am having real trouble trying to explain that I have fibro. When I do tell them I get a sad ( not compassionate) look from many of them and I feel very uncomfortable and embarrassed. I feel that most of them see fibro as some airy fairy illness - not like arthritis ( which I also do have) or rheumatism, something that can be tested or scanned for. Trouble is, I am now doubting myself, I won't even take my tramadol as I should - thinking that the pain will go away if I convince myself and that it is just a by product of my mental health problems!!! But the pain never does go, just gets worse to the point of barely not being able to move or breath without excruciating pain. It doesn't help when my care coordinator told me that a friend of hers was diagnosed with fibro and they had an injection and they are as right as nine pence now - I have looked everywhere for this miracle hypo but couldn't find anything!!!! So here I am with someone who is 'supposed' to be helping me with my mental health making me feel like ***t.
Why can I tell people that I am a psy... - Fibromyalgia Acti...
Why can I tell people that I am a psychiatric patient without shame but am embarrassed to tell them I suffer from fibromyalgia??????
An alternative name for fibromyalgia is "Soft Tissue Arthritis" - maybe you'd feel happier using that description of this blooming awful condition?
Julie xx
When i try and explain fibro i tell people that my brain can't process pain properly as its
decide to rewire itself sending confusing messages to the rest of my body! I also suffer from depression and i have also had negative comments on both illnesses. One 'friend' said its
called hypocondria (sorry about the spelling) and when i confided in someone about my depression they said i should stop taking my tablets so i could go all psycho on someone at work they didn't like! I am embarrassed about my illnesses but at the same time i am not ashamed, i didn't ask for them they just happened. The people that matter are the ones who love you knickers of your ailments and see you as you!
Take care madmoo and take your tablets, you have them for a reason 
Just read my comment again and realised that somehow knickers has made an appearance, and because i am using my phone to leave a comment i can't see where to delete/remove it lol
Sorry madmoo :-)
I know exactly how u feel, I find my self constantly having to explain myself At work, I feel like an idiot whEni talk like I'm drunk, slurring and coming out with nonsense,whEn I forget something,I was told two minutes before,when I can't hear what has been said, and when I'm popping pills for pain, my friend at work keeps saing,your trouble is you taKe too may pills,she means well,its igorance, I work in a residential home and the work leaves me in so much pain in my hips,I work. Partime nowas full time ended up with me being bed ridden for three months, I have once told some one of all mt conditions,spondilysis,rMj,rls,fibro,ibs, and they looked at me with indifference, as u all know,I think people just don't understaand ,or can't be bothered to try,its human nature. XX
I get embarrassed too. People ask me when I haven't seen them for a while "you better now? You wasn't well last time I saw you" and so it begins...explanation on deaf, confused or dis-believing ears. But on the other hand there's my Mum and Sister saying "what you doing that for your not well enough to do that...or.....you cant/shouldnt be expected to do so and so, your ill!" im not sure what makes me more angry, me telling someone why and what or somene telling me I can't or shouldn't!!!
I'm stuborn to the end lol
Xxx flips xxx
Oh I have given up trying to explain fibro, people just look at you
They either have never heard of it or else think there is no such illness
So I just say I have rheumatism which I think people used to say
Years ago when fibro had no name people seem to except that
Love viv
When my brother asked me what FM was I told him to read up on it via the internet - this worked well as he now understands whats going on maybe thats what we should tell everybody who asks!!! soft hugs xxx
This has not been my experience at all mostly everyone I speak to knows somebody who has it or they have it themselves. It seems to be rife round here which is rather worrying. I just talk about it very openly I feel the more people know the better about this illness,why should we hide away? I have no time for people who don't care or think its all in our heads,they can go jump lol
I would also like to be open about it with everyone but how do you deal with people who tell you it's in your head only or that they had it but they were cured by eg. Eliminating nightshade from their diet?
i totally agree why hide it be open xx
I tried the 'ignore it and it'll go away' theory when I was still awaiting diagnosis. Every test was coming back negative, and I was convinced that it must all be in my mind - an invention of my own psyche to get me away from work for a while. But it wasn't, and the abstinence from pain relief only served to make me even more grumpy, and in even more pain.
People won't always understand - I work with medically trained people, and even they don't always understand - let's face it, we don't always understand, but it is real, and it is flipping painful!
Gentle hugs xx
I just explain it as being a chemical imbalance in the brain xxxxx
Why, oh why do we do this to ourselves. We are the ones in pain, we all know it is real, why do we all worry abut other people. I think we should ask any one who has a negative comment " do you want to experience what I go through every day, have my illness with pleasure". I feel the trouble with us, this includes me, we want to be normal and be accepted. But, what is normal. Don't feel as though you have to explain yourself or justify yourself. They are the ones with the problem, NOT YOU.
Kind regards my fellow fibromite
What you say is so true, I love my moments of normality - but boy do I pay for it later!
We just have to find shortcuts where we can, pace ourselves when ever we can and ignore the stupidities of life, who cares if the bed goes unmade, the freezer isn't defrosted or the vaccuum doesn't do under the bed? And I use mobility scooters in supermarkets and shopping centres ... that saves my spoons.
When people ask me I try to remember to send them a link about the spoon theory too !
Julie xx
I always try and be honrst with people and explain that fibro results in being hypersensitive and in pain all the time because of faulty wiring in my brain but generally they either give me an incredulous look and change the topic or they tell me I have this because Inn depressed and not dealing with my issues so it is psycosomatic or I should try x or y alternative treatment which will get rid of toxins from my body and therefore get rid of the pain. As the fibro started after a car accident I am pretty certain that won't make a difference. But I always get the whole you don't know until you try for however long spiel and when I say thank you for the advice but I'm going to try other non alternative treatments first they start on this mission to convince me all over again.
I always recommend people read up on it but the only people who do that are the few who accept what I am saying is true, the ones that are doubtful don't bother. I wish there was some official list of syndromes approved by some large medical community that I could show people so they believe this is real and not something I made up.
Does anyone have a good method of convincing people who are doubtful and firmly say no thank you to those who believe a healer will fix it?
How do you test for fibro?
i have given up
hi all x
ESA50 APPEAL FROM IB TO WRAG .--REGULATION 35 EXCEPTIONAL CIRCMSTANCES
Fibro pain pelvic pain are they related
