General Chat

thats a bonus dawn isnt it,
just knowing someone understands

went for FM Course follow up today had to repeat two tests they do to see if we had improved.

First one is sit to standing 12 weeks ago I did 8 six weeks ago I did 10 today was 11 so that is on the improve mind you wore me out had to rest before I could do the 2nd test.

2nd one is time takes to walk 50 metres. 12 weeks ago was 50 seconds 6 weeks ago 53 seconds today was 50 seconds.

Was bottom of the class in both tests whoopsssssssss.

Maybe now if DLA contact them like I have put on the form they will be able to tell them I do have trouble walking and am not lying.

Also got the number for the local FM group that has recently been set up, not sure whether to give it a go or not.

you got nothing to loose dawn
give um a ring
go for it, yoou bin braver than me so far,
mind you theres nthing like that here

good luck dawn, i dont think there that busy at moment they seem to answer phone straihgt away,difficulty walking is one of my latter symptoms, im really shocked at how little i can walk at moment, ive never driven and always used to walk to work and loved walking, i can go as far as over the road and thats it, i walk slow, when im at doctors she comes into waiting room, its a long corrider her and specky just walk down chatting lol, till i get there then i ask how she is and we laugh xx

i had probs walkin earlier in year but it eased wih t painkillers, if i dont take um twice a day i start to get it back

well Drs have got my prescription wrong again so have to go back down tomorrow so am gonna make an appointment to see him cos I have so many little things that might be the tablets that only he can tell me.

Will write a list of things so I dont forget any cos you know what its like brain like a sieve.

Just went to open evening at college with eldest and she hates me using my stick so I didnt am shattered nw as she is as tall as me withvery long legs so her steps are like paces to me and cant keep up with her, seem to remember her saying I could use her arm that didnt happen though.

forgive me if i have asked this befor but do you get really light headed and feel exhausted, by just getting
up and walking a few steps

yeh i do puss
it may be blood pressure low

i take blood pressure tablets for high could be that mayby xx

could of knocked his head off.

had boiler man servicing boiler today and in the conversation asked about grants for new boiler as was on disablility benefit. Later he said well you look ok to me dont look disabled, could of screamed at him.
Did politely tell him chronic fatigue and constant pain wasnt funny.

No wonder its called the silent disability

d x

especially if ive got make up on i get it, and yet if we sat there looking disheveled wed be told not to let ourselfs go, i like being told i look well, just dont like being disbelived because i take pride in my appearence one of the few things im still in controll off and ive always been a girly girly xx

have nudged this for newley diagnosed

Hi all,
I am a social worker and have a client with FM who has 3 children. It's really difficult to get support for her because FM is not a visible disability. Reading your threat has made me more aware of what she is going through. She is also getting DLA care at the low rate, which is so wrong. I would appreciate any advice on what you think I can do for this lady.

nudging for others to help SiS

Hi sis I have pm'd you.

Gillie XX

hi sleepless, it is now a viable illness, and department of health have been notified of this, as doctors have, infact its closely linked with MS.
if your client is getting no where with her GP.,
i would suggest she changes her GP.
there is a lot more available to her now as in classes physio and aqua classes, hope this helps love puss x ...ps, chronic fatique is also related, and can be caused due to the meds, if i can be of any more help let me no xx

Happy birthday to my FM is one year ago I was diagnosed, for some reason I thought that getting a diagnosis would make me get rid of some of the symptons but oh no they are worse.

Felt stupid this morning trying to write a list at school an could Iremember how to spell biscuit NO and even now typing spelt it wrong first time.

Worst thing is me and hubby talking today and he said he finds it hard to accept what I am like now he keeps thinking of how I used to be

Am gonna try at school bingo tonight to cope without my stick wonder how many times ill feel myself falling.

God I hate this bloody condition.

d xx

i hurt lol

hi all
i sore today, in fact i ached yesterday too
ive come off my tramadol, cos neurologist wanted me too,
but now i have to take ibuprofen cos i cant lift my right arm up without it hurting my collarbone bad,
feel absolutely kna....... tired out

got apptmt thursday with neurologist

have had to take higher strenght of duloxetine due to manufacturers delay in the 30s , the 30mgs were pants anyway
doc asked hows headaches better worse?
i said ' the same' still there , still hurting like hell
so here i am, trying the 60mgs since saturday

julie ann i dont know how your managing off the tramodol, dont understand the neuroligist either what right has he got, he is not trained rhemutoligist, ive taked the 60mg for a few months the headaches are less, duloxitine, but only drug induced sleep is respite, hope you get some better care xxxxx