Fibromyalgia - worried to tell people

Tinkerbell

Hi all

I was diagnosed with Fibromyalgia 18 months ago by a neurologist from Walton. I often have a sore neck, wake up feeling like I have been sat on and am plagued with cramp. I don't tell people whats wrong because one of the first people I told said "oh yes that's that made up thingy isn't it" I walked away feeling very embarrassed and now don't tell anyone. I realise this is an arthritis web site but its noted as one of its areas. I work full time which I enjoy. does anyone else feel embarrassed and worried to tell anyone its affected my short term memory and my balance. I can be in mid conversation and completely forget what I was saying. People must think im mad.

[Deleted User]

Hi Tinkerbell welcome to the forum, you will find that everyone is welcoming, and encouraging.Please try all our forums and enjoy the replys and help in your situation.
Yours Mod on Fridays

mig

Hi Tink (hope it ok to say Tink) I have RA so can't help you with your problem,we have all met people like that I'm sorry to say there's a lot of ignorant people anyway welcome welcome we are a caring bunch mad as hatters some of us ,jump in whenever you want. Mig

hileena111

Hi Tinkerbell
Welcome to the forum
I cant help you with your fibro....I have OA, scoliosis, spinal stenosis etc LOL

I do understand how you feel....I'm a volunteer for our local arthritis branch and we get this a lot about fibro
Dont feel embarrassed about it...read up on it......Knowledge is power
Think before hand....what do people say to you,? Think of answers and have them ready if anyone says anything again
Fibro is a form of arthritis so you are welcome

We nearly all get comments at some time or other........it could be because we have a disabled badge for the car and dont look as if anything is wrong with us ......{some chance that that would be me LOL I'm on crutches permanently.}
Or comments about crutches "are you still using those things?"
You have to get a thick skin some of the others will come on and possibly tell you their replies.

Love
Hileena

dreamdaisy

Hello, I have PsA, OA and fibromyalgia and have heard all kinds of responses when I've told people what's up with me: to those who are darned right rude I reply in kind 'And you shouldn't wear yellow / red/ pink/ blue etc., it makes you look fat,' or 'My psychiatrists say it isn't in my mind,'. Many of us on here have fibro and we know how difficult it can be.

I was taken aback when my rheumatologist diagnosed fibro because it denied by some doctors but accepted by others; if the medical profession can't sing from the same hymn sheet then it's little wonder that the general ignorami who make up the 'great' British public won't know much about it. We have to develop a thicker skin because people cannot help but be ignorant - if they have had no direct experience of a chronic condition they have not one clue about what it involves - you have to feel sorry for the healthy, they know not what they miss.

I wish you well. DD

Megrose489

I feel for you, Tinkerbell. I've recently had blood tests to rule out Polymyalgia Rheumatica, but the GP believes I have Fibromyalgia, as well as the OA. I know this is probably true - I also have IBS, which is linked to it - but, initially, I felt very unhappy about it all knowing that some people don't believe it exists. One of those is one of the practice nurses at my surgery. I mentioned the possibility to her a year ago, but she dismissed it. Now I have a very nice young doctor who is very thorough and supportive of my aches and pains.

And you're not mad at all. My memory is rubbish, too. Fibro fog I believe it's called. Last week I tried to collect my prescription from the chemist, when I had already collected it three days before!

Fibromyalgia is listed on the NHS website and Patient.co.uk., so it definitely isn't made up. The UKFibromyalgia Forum is well worth a visit. Also, the information in this link is something to tell people who don't know anything!

http://www.ukfibromyalgia.com/advice/you-are-not-imagining-it.html

All the best to you and I hope you're soon feeling much better.

Meg

barbara12

Hello
I think it the same with MS I have a friend with it, and she gets the same..it doesn't exist one person said to her, only I have seen the changes in her and know it does...its awful to be embarrassed about it,you have enough to contend with...like they say you find out who your friends are...at least you have us to talk to...x

Tinkerbell

Wow. I didn't even expect a response. Thank you all for being so kind. It's so nice to hear from other people. I hope you all have a lovely day tomorrow. Thank you so much for your lovely replies.

Tink xxxx

hileena111

Hi Tink
Thats what we are here for....to support each other

One of these days we'll be asking you to support us



Love
Hileena

As5567

Arrogant people like ain't worth losing no sleep over, don't be afraid to tell people. Most people are decent and will be supportive but there will always be idiots out there who think they know it all and have the nerve to tell people they are faking things.

When I first started driving at 17 I would be ashamed and scared to use my blue badge at the hospital because of an old couple who shouted abuse at me and called me all sorts simply for using a disabled parking space and displaying my blue badge. I still get that type of reaction from time to time but now it really doesn't bother me and I simply ignore them, or if they are the in your face type of people then I just have 2 words for them which usually does the trick.

Tinkerbell

Thank you for all your kind words. I'm still trying to find my way around the site, call me Tink that's fine and i have received a lovely pm but no idea how to respond to it.
Its nice to hear from other people, i was surprised so many people responded and such nice comments xx

Take care guys n gals xxx

Tink xx

dreamdaisy

Somewhere at the bottom of the PM message there is a button which says 'Reply' - click on that, new screen, type your message, click 'Submit', message will reappear for another check, if all OK click 'Send'. DD

jules5

Hi all hope everyone keeping warm bbrr. I agree wth wat everyone says g people are dam right rude. I use a wheelchair and the times people say to my daughter is she ok. Pardon.. My body not much good but I am a articulate lady Thanku. Ha that usually shuts them up. Welcome tink.

dreamdaisy

Are they rude or shy, Jules? Some people genuinely do not know how approach someone in a chair - do they crouch to get on the same level (possibly patronising in their eyes) or do they stand there forcing the one in the chair to look up (if they can?) so they talk to those who are with them - addressing the likes of us is not easy for folk to do. In a well-known-orange-themed supermarket today I said to a older lady in a motorised chair that she should precede me to the checkout even though I had arrived first - her response was unprintable for this forum but the gist was she agreed - it goes both ways. DD