New Page for us all and for our new friends!

hi tess

you keep up the finding energy for ur brothers surprise party as it will prob do u some good to get out.

I have been very upset today got a letter from the dwp doctor that came out, appeal services today and all it goes on about is my left arm, he said he thinks it is burtitis (but never examend me) and it will prob go in about 6 months(which i have had for 1 year now . it also says that i can walk 300metres..where the hell he got that info i dont know so things for my appeal in jan 26th isnt looking good :x so i am so frustrated today and feel the stress of this is really getting to me and making the fibro worse....i feel so much like giving in to all this and the illness and it is so bringing me down.. anyway i will stop moaning and i hope u all are good and not hurting to much..

luv di x

Hi Di, Tess and everyone,

Oh Di, how awful for you Do none of these people listen to what we say about how we feel and how this dreadful condition affects our daily lives :?: Like I said before you have more courage than me as I couldn`t even face appealing.

I was advised to ask for an assessment by an Occupational Therapist becasue I can`t have a bath and struggle to get into the bath to stand and have a shower. Finally got through to them today after trying all week and never getting an answer :!: Only to be told there is a six month waiting list for the assessment and when they have decided if there is anything they can do there will be several more months wait before any work will be done :x She then said I should not try to have a bath if I felt it wasn`t safe and never if there was no one else at home. If taking a shower became impossible then just to wash :!: :!:

I have decided to keep a diary of dates etc and a brief record of what was said.

Hope everything goes well at hospital tomorrow Tess, will be thinking of you. Have a nice time at your brother`s party.

How are you Ses, not too bad I hope.

take care all

Love Linda

Hi Di

When will these people listen to what we all have to say. I am not looking forward to going down that route. Luckily I am ok at mo but it is not fair on you, Linda and Ses who all need the help. :lol:

What would they do Linda then if you couldn't wash yourself. Ok you cant have a bath or shower but ok then you are all right just have a wash. :lol: How rude are they and making you wait for something you need doing now not six months down the line. :cry: Makes me really cross when I hear about you and Di and your worries.

Thanks will let you know how it goes tomorrow at hospital. Will be pleased when it is all over :cry: I will try not to get to nervous but at least it is in the morning and not got to wait all day. :cry:

Well hope everyone else is coping ok.

Love Tess x x

linda. i got lots of help with the OT i even have a electric chair that helps me up and down, but i was very lucky as i was seen within 4 weeks but my friend has been waiting 6 months, i have got a bath board to help me, and believe me please get the strenght to fight those people for help we DESERVE. fibro might not be a death bed but somedays i wish it was as the pain and fatigue i go though it feels like giving up...

tess thanks for ur reply its always nice to hear from people on here as to what they think..im going to go to the advice shop in edinburgh and get some help with them now as i feel i cant do all this myself.... im so tired im off to bed its only 850 but i cant go on anymore so thought i would pop on to speak for a min...

take care and has anyone heard from ses as not for a couple of days? hope she is ok...

speak soon.. di xx

Hi Everyone xxxx

I am so fatigued I have no energy and the pain in my hip and overall pain is getting me down :oops: with your appeal Di I found a good website which you could get info to put forward to the appeal which is.......

http://en.wikipedia.org/wiki/Fibromyalgia

It has loads of stuff on this website I never even thought about!!!! I do hope you have someone that is going to the appeal with you too, my friend took a letter from her doctor and won the HRM with LRC so maybe that is an option you could do, as after all if you have had to call your doctor out ........hope you made a note of these occasions too as you could tell the appeal about these occasions....... getting a letter off your doctor though should back you up as he has more of a one to one with you....... thinking of you too hun xxx

I am so warn out it is unreal....... joys of fibro hey!!!!!

Hope everyone has received their £60 too as if you get the £10 xmas bonus you should get this too....... payable between jan and march....... I haven't got mine yet!!!!!

Anyway do take care everyone..... I just wanted to see how you all are and I do hope all goes well with your appointment Tess xxxx

Love and kisses xxxx

ses..

i got my £60 bonus on wed..yipee i can put more gas in and keep warm lol

anyway thanks for that website will have a good look at it.. i phoned the advice shop today which helps u with ur appeal so i have to go on monday morning, i dont hold out much hope though and i think i will be devasted after all my hard work, can u do anymore after a appeal??

well everone else how u all doing? i never slept at all last night but trying so hard not to have a doze till i go to bed tonight... hope u all are not in to much pain and hope u all can have a rest from this illness..

speak to u all soon, luv di xx

Hi Ses, Di & Everyone

Poor you Ses feeling so fatigued it must be horrible for you with all the pain you get with your hip. :cry: Hope you get some relief from it soon.

I was like you Di I never slept very well last night. :cry: Got off to sleep ok but woke with terrible pains in my ankle and leg. My legs were really restless and had to take some pain relief for the first time overnight for a long while. :lol: Knees are really hurting tonight so think I shall take some pain relief before bedtime. I haven't managed to do any exercises today yet! Went to hospital this morning and was good news. Consultant felt all round my neck and no lumps and bumps. :cry: Said there was a mix up last time I came and I shouldn't have been discharged. :cry: So have to go once a year for the rest of my life. This is because they have to monitor my bloods and the thyroxine I am taking to stop any cancer cells coming back. :cry: Feel more relaxed now! :lol:

I hope everyone else is getting on ok now.

Love Tess x x

Hi Tess,

Just popped on to see how you got on, so glad its good news:D

Not had a good day today, with one thing and another, feeling so....... tired. Will catch up tomorrow

Love Linda

Hi Linda

Thanks was really relieved. :lol: Don't mind going as at least they keeping a good eye on me. :lol:

Had a bad sleep overnight. Partly being on my own as stu on nights and no children here now my son gone back to uni. :cry: Got to find some energy for my brothers party tonight. Finishes at 11.30 so shouldn't be too late getting back as only in Peterborough.

I hope you managed some decent sleep and not in too much pain.

Love Tess x x

Good news Tess, I do hope you have a lovely time tonight hun xxxx

I am so sick of feeling like crap I got my IB50 form to fill in I do not get Incapacity benefit so it is just a load of hard work for nothing!!!! Yeah LindaI have been feeling so tired no energy and every bone in my body feels affected by the cold like Tess was saying my knees and ankles excruciating pain :oops: good job I have loads of hot water bottles :roll:

Di you can appeal again if your not happy with the decision. If you have been turned down for Disability Living Allowance you have one month after you have been informed of the outcome to appeal the decision. YOu will then receive the Statement of reasons and hen you can go from there, mine has been sent to the Commisioner as they did not go with the law and guidelines, as the SOR was very contradictory on how they got their decision!!!! I am still waiting for my appeal....... :roll: I do hope you have a letter off your doctor which will stand you in good stead or any Consultant reports, as like I said previously, my frined took her doctors letter to the appeal!!!!

I hope everyone is having a better day xxxx

luv xxxxx

Hi Ses and everyone,

Sorry you`re feeling so grotty :!: It`s the fatigue and stiffness that is really getting me down at the moment, the intense pain is not too bad.

I applied for DLA in March when I finished work and was turned down mainly I think because I got a bad report from a locum Dr. who I had seen only once and didn`t know me at all :!: Was so depressed at the time and didn`t know where to get any help from so I couldn`t face the appeal Do you know if and when you can put in a new claim :?: My own GP is back now and knows just how much trouble I have with everyday things. He suggested asking for an Occupational therapist assessment and there is a 6 month wait :!:

many thanks Linda

hi ses,linda, tess and everyone

good news :D on ur cancer check, really pleased for u, one less thing to worry about, well i have been so ill last few days, been feeling really dizzy that bad that even when lying down couldnt move my head without me thinking i was going to pass out... pains been really bad to,, sleeping pattern is so out, think i am so stressed about this appeal im such a worrier, but know im going to be very disapointed next monday.. im going to advice centre tomorrow( monday) so hope they can help in some way, my doc letter wasnt very good either but my hospital one was, so dont know how there going to view it,

anyway just having a restful day today as feeling a bit :? and dont want to over do it as i am really fed up feeling ill all the time..

anyway hope ur all doing ok and not in much pain.. let u know how i get on tomorrow... luv di xx

hi Di,Ses & Linda

Had a good night at the party last night. Knees are really sore today and painful. Thanks Di was a relief everything ok for another year with the cancer check. Hope all goes well for you with your appeal. Linda there is always a wait before anything is done.

Hope everyone else us coping today. Her you are getting some reliefn from your hip Ses.

Love Tess x x

Hello everyone xxxxx

So glad to hear everything is ok with your check up Tess xxx :cheerup: good to hear xxxx

Well Di I would highlight the Specialist ........ which one do you see most of the time??? if your doctor is say a locum then he/she haven't got a good understanding of your troubles so also highlight that if they ask????The appeal board will probably ask if you have had falls and so any hospital attendances would be good to remember as well as when you called the doctor out........ I would stress that you often have to call the doctor out........ I hope someone is going with you too, to help you with getting up from your chair as I wouldn't be able to get back up!!!! Nor would I be able to cope if I dropped something as I have to get my kids to pick things up...... my daughter came with me at my appeal, as my little one was in nursery and hubby was at work. My case was complicated so I have to go through another one thanks to the appeal board just looking at the wording in my \"paper Appeal\" presuming I was still at work, things like this, the facts weren't correct so I have to fight my right like yourself xxxxxxx

Linda you can apply anytime, You are in pain 24/7, you need help,and if you have a good understanding with your doctor all the better, Just tell the doc how bad you are on your worst days. DLA like to know if you can walk more than 50 yrds,(I am in pain as soon as I walk so am unable to physically walk easy)they want to know if you can cook a meal for yourself, get washed and dressed on your own, can manage your toilet needs, medication and turning over in bed and getting in and out of bed. I am thinking of applying again as I could be waiting ages for this appeal process and as it is I am a lot worse than what I was when I first applied anyway!!!!

I am in so much pain and so physically fatigued I am so fed up the pain is driving me nuts and my little one is hard work at the moment so I feel like screaming!!!!! He is trying to rule me if you know what I mean....... I put him to bed and he screamed I had to leave him to cry and listen to him swearing he finally fell asleep........ until now!!!! He is coughing again and so i will have to get a doctors appointment for him again. I have had an awful day, I have lost a key which is the only one too and so I am in the dog house, and due to the fibrofog I am sure I hung it up but when I went to get it, it has gone?????? Nightmare :evil:

Anyway folks my dear friends xxxx I do hope everyone is having a beter day than me xxxx Take care everyone and lots of hugs xxx

Hi Everyone,

Ive been lost in space for a bit with this ruddy rotten modem. Couldnt stay online for more than a few seconds then bump!!!

I had a quick browse of the posts but I`ll need to catch up on reading them.

Tess....glad everything worked out ok at the hospital.

Di, thats rotten news! Like the others said...they don`t listen to a word these people.

SES, sorry to hear ur in such pain. Grinds u down!

Linda, these waiting lists are horrendous.

I`ll catch up with everyone later.

Take Care All

Lindy..x