General Chat

Those of you whose pain is caused by fibromyalgia do you think that all the bad 'press' given to ME when doctors refused to accept that it was an illness, influences how people feel about your illness. I have to admit that originally my sister diagnosed herself as having ME and eventually got it accepted. My daughter is a senior underwriting manager for an insurance firm and their doctors never used to accept ME as an illness, and that prejudice continued on to fibromyalgia. I think nowadays doctors accept FM as my sister has a blue badge and I know others on here are registered disabled with FM. But the original disbelief can't have helped.

I am afraid my daughter i still a bit sceptical about my sister. Like you say Lorraine she does manage to go out a lot socially and goes away on holiday etc. But it is always at a cost as she went shopping in Portsmouth last week to buy holiday clothes but was in pain all the following week because she overdid it.

ann
Glos

You are quite right.
It is like depression or post natal depression.

NOTHING TO SEE..... so it's not there!!
Right....sorted!!!
see you later.
Deanna X

Ps I have a TENs machine too. It was £69 when I bought it.

ann yes i dosnt help, but after having a long chat with the rheumatologist he says that me and now fm could be the same and it now has to be reconised as a illness and treated as such, and in recent findings they say its actually a auto imune disease hence the feeling of feeling ill all the time as the body is constantly fighting, i suppose as doctors leave med school they will automatically treat it serious, although i didnt self diagnose, one night when i couldnt sleep i read theough the fibro thread and cried my heart out that i wasnt imaginging it all and other real people were sayiung the same symptoms as me, my gp went on to say that any illness is always classed as in the mind untill proven otherwise that fibro thread saved what sanity i have left lol , thanks for this thread ann i really felt like a chat tonight about it but sadly my back is killing me so im off for a lie down, just thought over the the last couple pf years ive always gone camping and loved it but sadly ive sunbathed in bed these last few, but a change of bed is as good as a reast lol.

Ann this is a very good thread and we should have more like this.

I have learned a lot by reading your stories.

Thank you.
xx

Ann
thanks for this, I had only come on to check any messges and saw this.

I have spent the whole weekend feeling awful and in agony and what I got was 'its your own fault you did the carppets and rugs with the rugdoctor in the week and now you are apying' . Today as I had promised her I took Tiddler , laddo and his mate swimming, I have spent the rest of the day lyign on the bed in agony hardly able to move,but a four year old cant understand how much pain I feel. Just got up for tea and cant even eat it which hasnt gone down well.

Its 6.20pm and I will be in bed very soon trying to get comfortable but knowing I wont be able to.

I am my worst enemy cos I dont tell people how bad Ifeel as I know people look at me and see a 40 year old with all er limbs able to walk(just at times) and dont understand all the symptons, how can you tell someone you love not to touch you cos it is agony just touching your skin, so you put up with it.

Or people dont understand why you cant just say yes to something in a few weeks time, we never know how we will be feeling, and then you get turned down for things that will hep you and it makes you think its all in your head again.

Sorry am rambling now so will go and find my bed.

take care everyone

d x

Look after yourself and I hope you feel better tomorrow.
xx

Dawn that is so familiar.
When I was first diagnosed and put on the steroids, I could not believe how well I felt.

Three weeks later, I could not believe how bad I felt.

Six months later I was beginning to really struggle!! And so it went on.
My husband used to tell me off for hoovering, washing, dusting.... anything really, because I suffered so much afterwards .BUT, you have to try while you still can, don't you?

Now, just like you Dawn I have problems getting comfortable in bed. I go to bed at 8.00, read until 9.00, then put the light out and TRY to sort myself out, sometimes it takes until my husband comes to bed.... don't ask me why.

If I do anything, like you I suffer, often for days!!

It is such a pleasure for me to see that you are the same as I am.
That is not a nice thing to say to anyone, but you know what I mean don't you?
It must be terrible for, you Dawn, and all the others with little ones, at least mine are all grown up.

Good night girls, see you tomorrow.
Deanna X

forgot that last point Dawn.

People do NOT understand the fact that you just CAN'T make arrangements in the future.
If I make a plan to go out, say to the theatre...... I have to start to plan a week ahead. resting and planning the day.... shower, laying out clothes, making sure my money is in my handbag..... it is ridiculous, like planning a children's day out!!! :-0)
Deanna X

I am glad that I started this thread, both for your sakes and for mine. I can see now that my back pain is really nothing compared to the pain you all suffer. That makes me feel better for me but I feel bad for you. If talking about it helps please keep this thread going. I do understand the planning ahead part because that is how my sister is. Dawn, it must be so hard with young children to strike a balance between letting them lead a normal life and managing your own pain. It is also difficult for your OH I am sure. I too get the 'non' sympathy bit when my back hurts after I have spent about 30 minutes doing a little bit of gardening, 'it is your own fault'. But nobody knows how it feels to know that you can't even attempt these things that you so want to do without suffering afterwords. after all, some days you can do these things and not suffer afterwards can't you? And the criticism doesn't help either I know. If we didn't try to do things we may as well give up.

Ann, thankyou so much for this thread, i suffered nearly 9 yrs before they diagnosed FM, i actually thought i was going crazy, my OH was a rock, he believed there was something wrong and never doubted me.
I went from working 16hrs days to doing nothing and it took ages to get my head round it.
I feel deeply for anyone with chronic pain.
Wendy.xxxxx

Hopefully nowadays all those who suffer from FM or ME will be properly diagnosed and not have to go through what you did Wendy. I still don't think the media have put right the wrongs done to people who suffered and were accused of imagining things. What a great OH you have to believe you all the time. so many people were not believed.

Ann
Glos

I know Ann he saw me stumbling and falling etc and in pain.
I feel for anyone but must say we have just got new doctors in our practise and they said they have information on FM etc now while they are training so fingers crossed.
Wendy.xxxxx

Wendy, that is encouraging for you, and for my sister. although she seems to have an understanding doctor.

ann
Glos

I am glad Ann sening her a ((((hug)))) and wishing her well.
Wendy.xxx

Ann, I'm nudging this for anyone who did not see it last night.
It is such a helpful thread, and I wanted to say to you Ann;
Your pain is your pain, and since I can't feel it I don't know how bad it is.
BUT.... you can feel it, so never apologise to anyone, or think that their pain is much worse than yours.
No ones pain is worse than yours..... yours is the only pain YOU FEEL.
Look after yourself Ann. Deanna X

Hi there another message from our Ann - l have only just seen it on my mibile so sorry for it being late :o((

She says that there is a full page spread on fibromyalgia in the Daily Mail -( hope you can still get the paper).

jude sarf wales :o) x

Ann


It doesn't matter what the pain is caused by if you feel it its your pain ;;
I live in constant pain every day which can vary from mild to agonizing,,,even at this min its in fingers which I call my pathetic pain its there but not that bad ;;;just letting me know behave leave me alone ;;
but try and explain chronic pain to anyone and really you cant find the right words ;;;
I could say been there done that but like lot on here just shut up and keep taking the tablets;;
just don't ever be ashamed of your pain or feel guilty about it you didn't ask for it ;;; Wish I didn't have mine and wish I was still working but from going from someone who couldn't walk unaided or hold a cup to what I am now well what a improvement and there will always be someone worse than me ;;;;;;;;;;
Oh and love my spell checker as fingers dont do as asked ;;;


Babs

Sorry I had to be off line, I would have kept this going. Did anyone mange to get hold of the Daily Mail with the full page spread on fibromyalgia? It was a very good article. You might still be able to find it on line.

Ann
Glos

the problem is with pain - you feel like your either going on and on adn people dont wanta hear cos they cant do anything for you, when you just have to spit it out , thats all sometimes,
also you feel some dont believe you if they never heard of an illness, its not a well known name, they tend to be a bit dismissive,

only recently after suffering fro a long time from fibromyalgia when i had a serious bout of headpain,
OH came home from work and saw me sat on bath, head over sink, crying with cold flannel on my head,
i spend next three days in and out of bed, on settee, anywhere i could lie, third day after babbling speech, OH told me get dressed im taking you to hospital, they kept me in till headpain subsided,then sent me home, with promise to review my blood pressure,OH stayed home all week with me from work, my friends in work after speaking to him, finally realise i have pain, ping the light bulb went on, lol
i now await further checks to either confirm or unconfirm if it related to FM,blood pressure of sumut else, tho blood pressure is eratic
sorry im going on here,
thanks for reading
hugs to all :-)

Julie, I am so glad your colleagues have finally realised what you have been fighting all this time, and will be a bit more sympathetic. Hope the docs can get the headaches sorted out.
Hugs for you,
Lizx