What do you tell people when they ask what is fibro?

[Butcher79]

I'm new to the site and this is my first message. I have been diagnosed with Fibro for 12 years. My symptoms have got worse over the past year mostly due to my husband leaving causing extra stress and having to do everything for the kids on my own. I am now walking with crutches when I'm out and this means that everyone I know asking what I've done to myself. I explain that I have a condition called fibromyalgia but I'm not sure how to describe it. When I was first diagnosed I was told its a soft tissue arthritis. Is this correct or should I describe it as a neurological and central nervous system disorder?

[Goodienuff]

I tell them to look it up on the internet, cos it's too damn complicated for me to even TRY to explain it to anyone.

[ladymoth]

I just say that it's a form of arthritis. That seems to cover all they need to know, which is that you have a painful disability.

We all come on this site and have a good old moan, which is great, but if you tell anyone in the general community, they really aren't that interested.

I find that people always seem willing enough to help with things you can't manage, 'cos that makes them feel good about themselves, but if you want to talk about your illness in detail it's better to do this with someone who's paid to listen. Sad, but true!

Oh - and don't forget to say that Fibro is an illness that is only suffered by extremely intelligent and talented people!

[Hidden]

I try and use humour and fact as a mix

so I tell people its pain and tired and i fall over sometimes but i still wear high heals ... that way i look good on the floor ..

I do have a mix of reactions but thats what this communtiy is for ..

however there are great bits of info on line if you want to get leafles or something ..

Gentle dyslexic hugs

[suejayjay in reply to Hidden]

Someone after my own heart. I refuse to give up fashion and too wear heels. I expect it contributes to some of my discomfort when walking, but hey, as you say, you look good on the floor!!! XX

[Ginsing]

Morning Butcher79

It is difficult but explaining it down the arthritis line is good there is also a brilliant artical called spoons which helps people understand your low levels of energy . One of our lovely volunteers will post it for you (please) I think very few people apart from on here understand it. Good luck and welcome to our lovely site x gins

[Butcher79 in reply to Ginsing]

I've found the "spoons" artical and I found it really useful. It will help to explain the way I'm feeling to my son whose 15. It will hopefully kickstart him into helping more around the house.

[hamble99b in reply to Ginsing]

I remember seeing a message once on one site saying "morning. who's stolen all my spoons!" lol.

regards, sandra.

[Butcher79]

Thank you all for your comments. It's been a tough year but I am now getting things in place to help me manage through the day. Work are being brilliant and have made adjustments to my working pattern to make it a bit easier. I'm considering applying for dla as this would be the last piece of the puzzle to make my life manageable.

[Bev95]

I tell them to google it on the internet as trying to explain and make yourself understood is too difficult...I use to try and explain but gave up as they still didnt understand....and most people who dont have FMS dont until they actually experience it for themselves!!!!

[anneliza]

Last year I was up my local town using my walking stick and in pain. I was met by an ex work colleague, who was upset to see me with a stick. She seemed very concerned ( noisy) about what was wrong with me. Firstly I told her that I was always in fashion to look around where there was other people with sticks and that it was my latest fashion accessory. She also asked if it was life threatening which I replied only if I slit my wrists. I felt terrible afterwards but people don't understand, so I try to make light of my condition. I have a ESA appointment on Friday. I don't get any money, as it was stopped in April 30th. They don't understand Fibro so what is the point.

[Mills in reply to anneliza]

Hi Anneliza, my money was stopped in March when the new 365 day rule came in! it stinks, I've worked all my adult life...paying into the system & can only get a years money!!!.....yet able bodied people who have never worked get money no problem!!

They sent me a form ( well it was a book) to fill in wanting to know everything about my condition, every little detail but I couldn't fill it in, I found it to stressful & each time I tried I just couldn't do it..... but also I thought 'what's the point'? I was told by a women from ESA I wouldn't get much as my partner earns £250 a week (he works part time) well bloody wow!! I was earning £21,000 a year & had to give it up when work became to much for me & now we are expected to live off & pay mortgage & bills out of it!! They then sent me another 20 page book to fill in just to get my stamp paid!! again I couldn't do it & as I have more than 30 years work I already qualify so pants to them...they can all sod off!!!!

I do hope you get on better than me Anneliza...good luck love.

Take care Gwen. x

[roses123 in reply to Mills]

About right sounds like my life .

[hamble99b]

I say that I have a painful variation of arthritis which makes my muscles burn and my crutches help to keep my back straighter.

regards, sandra.

[Mills]

Hahaha, I tried to tell someone & sounded as though I had lost my mind, I just couldn't put it into words & it was so embarrassing as I was jibbering trying to make sense of it, so now I just say it's a painful neurological condition & stress plays a huge part & to look it up as it's a very complex condition & very hard to explain!!

I hope things get better for you Butcher.

Take care. Gwen.x

[Janet28]

Hi Butcher79 Welcome to our wonderful forum 😀 I'm sure you will find it invaluable chatting to others who have similar experiences and at different stages of their lives with fibromyalgia.

I always describe it as a chronic pain condition with flares & the symptoms are not unsimilar to Rheumatoid arthritis or MS with wide spread pain, along with other symptoms such as severe fatigue, very disturbed sleep, which causes other problems.

Please do go check out the mother site fmauk.org where you will find lots of useful information and links on fibro.

It's a good idea to lock your posts to the community so they are not accessible from the internet. If you look to right of screen you will see under "Pinned Posts" a number of blue links & instructions on how to lock it.

Peace, luv n light

Jan xx

[Hidden]

I dont tell anyone I am am unwell, apart from very closest friends..they of course know. For others I wear a mask, go out for a few hours and grin and bear it. Then the next day stay in bed. No-one knows what I go through to go out for a few hours and have a little social life.

If I met a new man, I never tell him I have FM. The last thing you would want is them going a reading things on the internet. People just do not understand pain, no matter what you tell them. My family reallydont even get it.

[roses123 in reply to Hidden]

Same here easier.No one understands it .

[robpw]

I tell them the truth - I fought long and hard to get this diagnosis and I fight every day just to appear normal and you know what I have my walking stick and it helps me get about and function and if they don’t understand I don’t care. Most people are really sympathetic or mention there friend who has it like we are all in some big club. Own your illness - own your struggles