General Chat

avent tried one yet

Accupuncture never helped me gave it a go twice for different things and zilch effect. must be immune to it.

trouble is i work part time,
tho have had to have time of sick lately,
i will get the forms thanks girls,

nice ot see you wendy, havent seen you for while i dont htink have we,

my friend gets it she works full time as teacher

hope you feel better soon wendy, how you been afected

Wendy
is stupid have got a disabled railcard and after report from Dr got Bus Pass as cant drive or walk far but they say I can get around, dont go upstairs much during the day as stairs are painfull but use the downstairs cold outsideish loo.

And now walk with Stick will be interesting to see what they say sure they sit there going eeny meany miney moo to see which ones get it

Dawnie you have to tell them you cannot do anything.........as though you allways have really bad days ((dont we all ))

Meant to say i only got low care first time now on middle.

Wendy.xxxx

Why is it the lovely DWP only gave me low care as hubby has to cook.
love them to come and live a few days with uis see what its really like.

Will see what do this time round.

\julie ann get the claim form asap as it is back dated to day you send form in online or if you ask for it by post when ou asked for it

Hi Julie Ann, Marion and Puss, hope you are all holding up.
I have been terrible with the pain for a few weeks now, hope i get some relief soon.
Julie Ann if you look at the DWP site you can ask for the forms to fill in for motobility.
Please when you get them, fill them in as if every day is a bad day, there are places to help if not sure PM me or anyone who will help.
You should be able to get mobility high rate and care.
I know it is Department of Works nad Pensions who deal with it.
Hope this helps Wendy.xxxxxx

thanks marion, dawnie just said about it,
you never get told about these things do you

i never claimed anything, we just struggle along thinkin yuo cant

im glad you wrote that marion,
it helps doesnt it to get reasurance,

hubby said earlier before he left for work a mate said i should be eligable for motorbility, its a bit like disability allowance but helps with car allowance,
i no idea where i find out about it though,
there are a lot of benefits im sure that some of us are eligable its just finding them,
cos it is a disability isnt it,

when i had grandaughter friday night i felt like real old lady, im only 43, it horrible feeling not to have strength to hold her for long

thanks marion, i have a little book i give them that i write in, but if i start saying some days i feel on my last legs there gonna think im neurotic xx

my doc said im little aneamic and to eat more red met and greens, and also said the tabs are making me feel like that, the morphine i only use about twice a week im to scared to use it more , although its nice when i do , i feel 16 again, think im just hormonal at the mo, just thinking about early last year i used to boast on here what a brilliant weekend id had , dancing on tables piggy back fights , you name it complete part animal and nutter now im like this , my life has completly changed and im now dependent on specky and my kids a little which makes me mad hope i dont bring you down reading this what worries mwe is the only relife i get is from morphine how long will it before i cant do without it and i need so much it kills me x

puss this could be down to the medication, that morphine your on could be cause or other medication, see pharmascist first, if you got good one, with list of medication,
also may be worth going to your gp,
but to answer you when ihave the pain real bad yeh i do feel like im on last legs its horrendous,
my brains scrambled, i very often dont bother talking to anyone as its pointless, anxiety maybe causing the breathless ness or lack of iron,
have it checked love
i did ironing this morning, worryed whole time, hubby took me out for wander safternoon, then i came back an had dose in sunroom, while he watched footy on tv,
i never get chance normally

well to start of i feel really silly,
in the last 12 months ive gone from a dancing raving partying lunatic to a person who is in pain 24/7the only respite i have is when i sedate my self, what i was wondering do you feel like you could be dying cause you feel so ill/breathless/tired/sleepy , forgetful clumsy and speak back to front, i have been wanting to ask my pharmacist for ages or doctor but feel like a baboon and the words wont come out, when i mean tired ness its something like walking to the washing line and hanging one piece of clothing out , and breathless as in you feel there is not enough air about , i am a asthma sufferer and there is a differnce, the exhaustion bit is horrible my mind wants to move but my body wont let me , this bit has come on in the last month or so , so wondering if you have this too love puss xx

wondering how you are today juli ann xxxx

hi marion, understand completly what you mean, i know from a child ive had a milder form of what i have now , one doctor i swa, asked why i took anti depresents lol, i said because im in pain 24/7 , he said well you shouldnt take them for that was he being curt lol, i just stick to the one gp now who deals with all linked conditions to this
julie glad you told your dad me and big gob, he is now reasured, my dad also died of a brain heamorge and im sure the feeling in the head is the same its unbearable bursting pain, but ive found what i do now really helps, dont be bullied into anything , if they feel you cant carry on working let them sack you , its how you feelwhat a horrible illnes we have xxxx

thanks puss didntn get to reply earlier it got so busy here daughter and son in law meant weell visistin an i love seen the kids, jess is our theres little aiden is by SILs first marriage,
dad popped in to check how i am. he didint stop long think he saw it was busy here, but nice to see him, reasure him its not wat they all been thinking with my head,
my GP lat nigt said i dont have tumour or haemorrage he thinks fro certain, he definately thinks its to FM which pain specialist said def not, ive lost faith in a lot of um, and feel a hinderance ot them, cos they cant sort it simply,
anyway ive decided that ive had day free of tramadol so far, tomorrow, if i have lot of pain in night ill try tramacet (its lower dose of tramadol + paracetamol and that should stop the side effects,then get mondya apptmen to see my own GP he seems the oly one who gets the problems iwth the illness,
my biggest wrory is givving up work , i love my job, but now feel others are thinking maybe i shouldnt be there!mainlly the 21 year old manager, all the rest just wnat me better,
will keep you updated
julie
x

hi julie i couldnt believe it about the tramodol, i think the neoroligist should stick to neuroligy and let the rheumitoligist deal witth your fm
i take the highest amount of duloxitine recomended at the moment, the drug isnt even registerd yet and stll in trial basis so to speak.
it seems by his coments he thinks its a depression linked illness and obviousley hasnt been told it is now a reconised debilitaing diesease
as for as i know low levels of serotonin, can cause depression and in fact is the main cause
unless he knows something we dont , i hate it when you see different people and they have different opinions, i could be completley wrong in all i have said .
my gp said it only works with pain killers
i would ring your gp julie and speak with them before someone not specializing in multiskelotin disorders, befor they start messing with your medication, spelling pmsl x, really hope ypou dont get messed about anymore
there is no cure for fm, and only pain killers ease the pain, is what ive been told
good look for friday, i have found with the one sided head pain, is usually after i have taking a strong pain killer yet something mild like brufen should ease that head pain, really feel for you now ive read this through.
i see one consultant one doc one pain nurse and if i cant get to see the same person i cancel, i will pm you my number if you wanna chat love puss xx dont worry if you dont xxx

just bin to see neurologist today

he wants to ween me off tramadol, building up on duloxetine, so wen i stop the tramadol completely i just take duloxetine one daily
he said it will build up seratonin in brain,
hopefully help fibromyalgia

as for headaches,
maybe tramadol!
blood pressure may be due to pain
rather than pain due to blood pressure
have to have scan on friday,
so feeling soooooooooomuch better NOT

felt ok when i came home but thisafternoon and now feel a bit down in dumps

to you both ladies
hugs

it helps to read how others have smae symptoms,
like the head pain,
my pain specialist is now saying she dont think it related to FM, thats why i have to see neurologist next week,
made complaint last week about hospital to manager, contacted um yesterday to say still not heard anything, they phoned me again today to say they are now onto it personally, the doc concerned(when i was admitted to hospital august) then phoned my home while i was in work, asked my husband if he was mrs evans he said no this is a male voice,
oh sorry she said no i mean does shelive there,
well do i have anyhope of getting anything sorted with general surgical doc who dont even know a man from womens voice
still waiting for results cos though they rang they had no info, god i gotta laugh, or blood pressure will go up !!!!!!!!!!!!!!!!!!!

good luck dawn, i too have appealed re the care componant, this is quite hard for me to put but if it helps i will, i was on middle care, but i refused to put that some times i needed help after using the loo, i felt that was the last of my dignity going , i recently saw my gp, i just burst into tears and explained i needed stronger tablets due to not being avle to move in morningsor bend, after a chat she advised that they should put the care componant back up, where some people fall into the wayside with this is that its actual personal care ,not specky having to pick kids up from school feed them wash there clothes cook cause i cant , but actually to claim it you must not be able to wipe ones own bottom literaly, that was why mine was reduced cause i would get in the bath rather than ask for help., at the moment specky gets nothing for my care he is not entitled to income support because he cant go to work cause i cant manage on my own, so just waiting for appeal, i hope to dawn that the fact i now pop 18 tabs and have the ME part of the fm, which makes me really upset, especially when your 12 year old calls you lazy specky has had a word with her, i have the backing of all medical team but it still takes between 11 and 15 weeks for appeal, one consolation we are having our rent and poll tax paid, and have a car from motobility, and have my haven my little caravan.ive had the head pain which is hell for days again and nearalgia, so i probably will be hitting the morphine later for a break, thankyou for this thread i need it more than anyone can imagine, cause i can go off on another and be a nutter lol.