General Chat

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

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.

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

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

Look after yourself and I hope you feel better tomorrow.
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

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 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.

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.

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

totaly agree christine, i wouldnt mind a day off from mine lol oh well i do sleep which a lot of people cant , btw i like dave clarke 5 too do you know any more

Oh Puss, that is sad if you are in pain and no one believes how bad.
I feel it for you.... and that is good of me, since I have enough of my own!! ;-0)
Deanna X

I find that too, when I go to a 'male' doctor. my little lady doctor is lovely, if I come out no better... it is not her fault, she has at least tried.
I cannot use cold, I did try it once about 15 years ago, and I ended in such excruciating pain I was screaming!!
I need the heat, and if I am in bed, I will try the heat before I take a tablet.
I do have the packs to put in the freezer or fridge, my son bought them for me. They worked for him you see.
anyway... nearly tea tome and a rest.
Spend a lot of time resting these days!!
Deanna X

lol ann thats how i feel , a forewoman, i miss planting vegetablesand i used to love walking im actually on quite a downer at the moment with the constant pain, but i have a 1 hour appointment with a gp who specialises in fibromyalgia on wednesday , to reasess my medication and hope fully try some differnt ones, i think i feel pathetic that walking to the washine line can leave me exhausted, im thinking a head that if i have grand children im not going to be able to play with them, im sure its just a tempory lapse but it caused a big fall out with poor specky and my freinds at the weekend, , me and specky are ok, and friends we are just speaking, they said they didnt realise things were sio badm but i guess we travel up there i have make up on and im drinking so its all hidden so its not there fault really, i have infact printed the first bit of this thread and sent it lol. so thankls xx

yes Christine you are quite right and I always say... "I'm fine thanks, and you?"
But to a visiting relative, we should not have to pretend that we are not in pain, every time we get up or down!
I've heard people say that... enjoys bad health....
I have even heard it said by a friend of mine about her sister!!
When I asked what was wrong with her.... she gave me a list of REALLY SERIOUS STUFF!
How could anyone say things like that , when they themselves enjoy such rude health?
We would all like that.
Hope you all manage your pain, not easy I know, I do use a lot of heat on my pains. That usually works.
Deanna X

Christine, what actually gets me is when you go to the doctor and he asks how you are? do i say 'quite well thanks' so then he is thinking, well why are you here then. what I usually say now is 'not so bad thanks' I think that about covers it for me.

Ann
Glos

Lorraine, maybe as you get older there will be new things discovered, new pain relief like there has been in the past. Only you though can make yourself 'live with' the house untidy, maybe by relaxation techniques where you are able to switch off. Better an untidy house than an unhappy spouse. Gosh I am a poet!! Ignore the clutter, as you say, Specky does his best,

I know how you feel though having handed over most of the gardening to tony when I love to do it myself. i have become a very good foreman (woman?)


.
Ann
Glos

just been reading through this and my worry is the amount of pain relive im using now at 40, will anything work when im 60 cause i will have built up a resistance to the drugs, as most of you know for a couple of hours on a friday night i get drunk, i do this as this is the only time i get some pain relive its wrong and luckily im not let it happen any other days , relationships are suffering with my friends as im not the girl i used to be and im in a dream world , i wish lol.
specky is good and im lucky ive lived with far worse its petty things really i like the house spot less he is more laid back so i get frustrated when its untidy and i cant tidy it cause im in pain or doped up on pain killers, its stupid the things we let bother us my cyber family on here have kept me going the las few months, and the banter we have helps i know i bore the bum of some but hey thats life x

You are quite right Ann, but there is the other side of it too.
When you get someone who IS verbal.... they are then often treated to hurtful remarks such as...." what's wrong with you now?"
I've had that said to me by 'family' ... not my nearest and dearest I must add.
It is difficult enough to live with pain without *lucky* healthy people treating us as if we are fussing ! That is often why people don't tell.
Deanna X

I really do admire those of you who have so much more to put up with than me. Maybe we should have more of these threads, they certianly make me count my blessings and, hopefully give those of you who suffer so much much needed support.

Michelle I am so sorry to hear about your partner and I am sure it was not in anyw ay your fault. Your daughter sounds lovely, as you do too. your optimism shines through your posting, thank you.

to all of you suffering pain, I hope tonight will be easier for you.

ann
Glos