New Page for us all and for our new friends!

I have been reading ur post on dla linda about ray disablility, u do need to need care during the night for at least 2 occassions for 30mins each time, i wish i new how u sent links on here i will try and get my son to help me but go on the direct gov site i think that tells u next to each payable rate,

My problem is... my own gp who i have only seen maybe 3 times in the last year half wrote my letter for dla saying i walked with a stick( which i do) but dont need any help( which is so untrue) so i have to argue that point that i do need help......also... the dla doc that came out put on his form that i can walk 300mtrs but i told him i cant walk the lenght of me without being in pain, also he went on and on in his report about my left arm that i have a frozen shoulder that that is short term and would be better soon, but what he failed to say was... im not wanting dla for a frozen shoulder its for fibromyalgia which was not even down on his report apart from the bit which he had to write down everything that was wrong with me,, im so upset that he wasnt even listening to me so thats why i dont think i will win my case but I WONT GIVE UP as i really do believe we deserve this.

so if anyone can give me some advice for monday i would really really appreciate it.

lindy, remember and tell the rhymatoligist all ur symptoms.

ses, thanks for the reply

tess, thanks for saying good luck it made me feel im not alone

going back to my needs. my husband has to get up with me in night, help me with the tens machine, helping me to the toilet and going for more pain killers for me, i feel like going on monday and screaming at them, READ our posts on this site, our lifes are ruined because of this syndrome, no day is the same apart from each day is filled with pain, i feel about 90 most days and feel like a cancer patient who is terminally ill, i know that sounds bad but cant help how i feel, i have no life not one that i want anyway..

well now i have depressed everyone lol.. ihope ur all well and as ses says... sending u all gentle hugs xx di xx

Thanks so much for your kind words, it made me feel much better this morning! You are quite right, I would still get up with him even if we had a commode in the bedroom as although he sleeps downstairs cause toilet is downstairs I still get up with him. Also now he`s suffering from depression since his sight loss his sleep pattern is dreadful so I get up even more often to try and settle him down.

Well, hope you`re not too bad today and that your hospital app. goes well

Love Linda

Linda,Apparently hun there is no criteria and like someone has said it is all by how you word things, things like for example........ Don't just say 'I get very tired.' Instead, explain what the fatigue feels like, how long it lasts and how long you need to rest in order to recover. I think it is the detail one has to put in order for the DM (decision maker) to make the decision. Anyway I do hope you have an easier time than me to claim it as your dear husband should just automatically get it with no fight!!!!!

I have been in A & E today great experience, I had severe pain above my belly button and I stuck this pain for two hours only to go to the hospital...... again my liver function test came back 110 and my sed rate was elevated but as I am seeing the Specialist next month the doctor today just give me meds, one pain killer and as that didn't work, he gave me morphine....... I thought I was going to have to stay as they put a candula in my arm, I thought I was there for the night, so relieved to get out!!!! anyway we will see what the Specialist has to say next month????

Lindy, I hope Conner is feeling better x, and I hope you are resting after catching up with all your work x. I hope your pain in your arm and shoulder gives you relief too, have you tried a hot water bottle? It helps me when my pains are bad, takes the edge off!!!!

Thanks Tess, Ethan is more or less to his usual self, we were at mike's mum and dad's and I had to leave him there to go to the hospital......... he kept them amused, with his vocabulary :lol: but as soon as we got back four and a half hours later he was being naughty!!!!! I do hope all goes well with your Physio appointment too hun xx

Well Di, I would point the fact out that your doctor does not know you personally and so if they want to check on your medical records the number of times you have had to get help from doctors on call they can do!!!! If your Consultant knows more about how FM effects you then I would ask them to contact him/her......... perhaps this could be used if you are not happy with their decision??? So you want a retrial??? Anyway they are my ideas I do not want to confuse you hun but just thought I would try and help you too......... make sure you have someone there to help you with your handbag etc as my adviser said you should do that, showing the difficulties like say for example you were to drop it........ I would have to ask someone as I can't bend forward as my back locks!!!!! the Benefits and work website looks pretty good but you have to subscribe to obtain some information, I would if I had the money, but it is weather it is worth the money, it helps with tips????

I am so hoping Helen is ok??? we are thinking of you xxxx

Take care everyone and I hope everyone has had a better day than me????

love and hugs xxxx

:cheerup:

How are you now Ses! Did the tablets help with the pain. Must have been really worrying for you. :cry: You were lucky they didn't keep you in overnight with putting a candula in. :cry: When do you see your consultant next month have you several weeks to wait. :cry: Hope its sooner rather than later for you.

Well I have been feeling really tired again. Think it is due to the wet damp weather we are having. My toe didn't hurt much at all when I went to hospital but now its done nothing but being painful. :cry: Its the arthrtitis I think at the moment more than the tendon.

Got my daughter Amy, Andrew and two little grandchildren Molly and Sophie coming for tea tonight. Doing a roast and have already got everything prepared so I could have a good couple hours rest before they come. Stewart is on days so won't see them as they want to be home for 6. He doesn't get back until 7.30. Amy is doing a controlled crying programme with Sophie to try and get her in a better routine overnight.

I am terrible don't like to see her cry for long but will go along with what she does. Luckily won't be babysitting overnight at the moment as Amy is still breast feeding so won't have to worry about that. Poor Amy was not getting her sleep at night and with going back to work in Feb needs to get her in some bedtime routine. This will allow her a bit more time with Molly as well.Molly is so good with Sophie. Molly and I was singing nursery rhymes to Sophie the other day. We were singing here we go round the mulberry bush. Molly was singing here we go round the mouldy bush :lol:

I had to smile.

Well got to go now and have some dinner. Hope you feel a lot better soon.

Keep going everyone!

Love Tess x x

Jeezo SES, what a nitemare time ur having! I hope the tablets have helped the pain somewhat.

Had to call NHS24 yesterday morning for Connor. Got antibiotics which have helped greatly. He seemed to be improving, then woke me at 5.30am yesterday morning complaining of a sore throat and ears. Could I find the hot water bottle? NO!! :evil: Wee soul had to lie with a bottle filled with hot water wrapped in a T towel on his ear.(u know those thick plastic soda stream bottles) Improvising - thats what it was... :lol: It helped, so thats the main thing. The difference a couple of days on antibiotics make! So back to school 2moro for him.

I have the mother of all absesses in my groin.. :cry: would bring a tear to a glass eye. So Im walking a bit like John Wayne at the moment! Get off your horse and drink your milk... :lol:

Tess I hope ur toe is a bit better. When ur toes or feet are sore....all of u is sore coz of the way u hold yourself trying to hobble around. It`s hellish! I have an involuted toe nail (grows into the sides of my toe) thats bad enough. When it needs done by the wee chiropodist who comes to the house (my saviour) I can barely stand the weight of the duvet on it.

I think we all need rubbed out and drawn in again... :D

Di, Linda....hope u both are ok.

Take Care Everyone

Liny...x

Poor you Ses do hope you are feeling better now and not in so much pain :?: I know we all have our own sets of additional problems apart from the fibro but I don`t know how you manage with little Ethan feeling like you do. I guess you just find that extra bit of something like I do with Ray :!:

Feeling a bit down at the moment, not in pain as such, just stiff and exhausted. GP said he hoped this week was better than last what with no heating and three medical appointments. Thought both ray and I would feel better if we could just get a few quiet days :!: I don`t want to go down the depression route again been there too often in the last 15yrs and I`m much better on the meds I have at the moment but know in my mind that I`m not as well at the moment as I was before christmas.

Hope you have a lovely time with little sophie and molly today, Tess. Been to Peterborough today to Mum`s so not been far away from you :!: Sorry you are so tired at the moment I suffer a lot with the fatigue element of the fibro so know what you mean :!: I find it doesn`t matter if I get a good night or not, sometimes I can fall asleep again on and off all day.

Hope everyone gets some rest tonight

Love Linda

ses, my god ur going through the works this 2009 already eh, well im as organised as i can be for tomorrow tribunal, i can honestly say im so so worked up about it, i dont think i will get it but will try not just for me but for everyone that suffers fibromyalgia.

so will come on tomorrow at some point and let u all know how i get on..

luv di xx

well to top it all for this s*dding year :oops: my tv is on it way out as the colour has gone all funny, woke up yesterday and I had a shock, they don't make them anymore even though it is only two year old!!!! and my sky box is on its way out too as not turning over easy........ I am so cheesed off.......... then my appeal tomorrow :twisted: I feel like screaming AAAAAAAHHHHHHHHHHHHHHHHHHHHHHHH..........

Any way Di ........ fight for your right hun xxxxxxxx

Linda, No wonder you feel down hun xxx I hope you had a lovely day at your mums, hope the change of scenery cheered you up xxxxx

Tess, I hope you enjoyed your time with the grandchildren xxxx

Lindy,I hope Conner picks up soon xxx and I hope you get your abscess sorted out soon xx

Anyway folks the appeal is tomorrow, I haven't much faith even though I believe I have paid around £4500 too much, annoys me though, cause when I bought this house in 2002 from the council, I owed rent and it was being taken from the sale of the house....... two years later they said I owed them £225, so what I am trying to say is....... if they can get it off me then I should be able to get it back off them!!!!!! I am going to say this too!!!!!

I am so mad this is the worse beginning of a year I have ever had :roll: pigging nightmare with one thing and another :evil:

Anyway everyone I hope everyone has a good night sleep xxxx

Is your absess like a big spot! I had something similar last year at the bottom of my tummy. Was really sore and dr said it was a boil and if it didn't pop I would have to go hospital and have it drained. Was really painful when it was coming up but luckily it went down ok. :cry: I hope Connors ears are ok and he is on the mend. My tpes are still sore Lindy and are made worse by the damp weather. :cry: Your right with your comment we all need a new start with no aches and pains. :cry:

How is your mum now Linda! Is she a lot better. Had a lovely afternoon with Molly and Sophie. They all stayed about three hours and had roast tea with me. Amy had to go then to get Molly and Sophie sorted out for bed. Got Steph my other daugther and Ant her partner coming next Sunday for dinner. Stewart is doing overtime so be on my own again. The extra money will come in handy for going away in our Motorhome later in the year. Like you say it would be good for you to have more days at home. Especially with all the drs, hosp appointments for yourself and Ray. We will all feel a lot better when the warmer weather comes. Can't wait. :lol:

Thanks Ses had a good time with the girls. Molly put her apron on and was helping me in the kitchen. She wrote out name places to put around the table for everyone. Getting really good with her writing. Its amazing how quick they learn to write. Had to help her with some of the spelling.

Good Luck for tomorrow and will be thinking about you.

Whats that saying it never rains but it pours. Thats what has been happening to us since christmas. First your boiler, then tv, sky box. At least you have had three things now. :cry: It can only get better. :lol: Did you get your boiler fixed? I do hope things improve for you healthwise as well.

Love Tess x x

I posted on the other thread...lol

It went pop through the night. Thank the lord. The relief was immense. Like I said on other thread, the dr thinks this maybe related to initial stages of the menopause! Whats that u were saying about rain...and pouring... :lol:

Talking about boilers, ours went this time last year. Had to use electric heaters for a couple of months til we saved the money for a new one. We couldnt have the old one insured as it was too old. Cost 1600 quid and to top it all a 400 quid electricity bill. Thankfully we have an electric shower as we had no hot water. Had to use a little water boiler (like the ones u get in cafes) to heat water for dishes etc.

I so hope uve managed to get it sorted.

Catch up soon

Lindy...x

Yeah I had the boiler fixed £185 so a good start to the year and then everything else is just going wrong, but like you say Tess, there is three things gone wrong so hopefully that is it!!! I had my appeal today and it has been adjourned so we will see what happened next month too, I didn't have all the papers as I was suppose to so they couldn't proceed...... I printed off DWP regulations and other stuff and the Judge took them to put to my file so I do hope this helps as the wording submitted shows that Tax credits are not taken into account etc......

I hope all went well for Di xxxxxx

Anyway I am going now as I am in so much pain and I am going to have to rest so I will love you all and leave you and I hope you all have restful sleep xxxxx

Luv and hugs xxxxx

How are we all today. Don't know what is hurting the most today. Got awful pains in both my wrists and pain much worse in the right one. :cry: Also my toes and ankles joining in now. Have done a bit more walking today than normal. Shall have to have an easier day tomorrow. :lol:

Well hope everyone else is coping ok. Hope you are getting some relief from your pain Ses. Sorry you have to wait another month! Thats all we ever do. :cry:

Keep smiling everyone. :lol:

Love Tess x x

Another month to wait SES - what a bummer! I`ll keep my fingers crossed it goes well.

TESS, sorry to hear ur achey today. For once, I don`t feel bad at all. My arm is ok...touch hairy wood.. :lol: Probably tempting fate saying that.

Weather has been awful here today. Grey and rainy.

Not much happening cept work.

Hope everyone else is ok.

Catch up soon

Lindy...x

I have been in pain all day, and yes I have to wait until the 9th of feb!!!! but at least they can read up on my factual documents on the DWP I submitted so hopefully the Judge will read these facts?????

The pain in my hip is going into my knee again so fed up, so I kind of know how you feel Tess xxxx nothing worse than referred pain as they call it!!!!

Yeah Lindy, doom and gloom, the damp weather seems to penetrate into your skin I blame the wet and damp weather for the continuous pain I have had!!!! Joys of fibro and Osteo!!!!!

Anyway my dear friends xxxx I do hope you all get a good night sleep tonight xxxx

Yes wrists are not quite so bad as yesterday Ses. :cry: Sometimes the pain from Osteo is worse than fibro. We have had a horrible wet day today no wonder my joints kill. :cry: Really do need the warm weather.

I hope you didn't jinx yourself Lindy when you said you were ok. :cry: Roll on the summer. Hope you ar both ok Di and Linda. :lol: Still not heard from Helen hope she is ok.

Love Tess x x