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Posted , 3 users are following.

hi all my good friend

im sorry i aint been on with my wedding anniversary and my daughters birthday i have been busy but now im in so much pain... rhem app in sept..

been disallowed dla care componant so trying to write ANOTHER appeal letter... the fatigue u all talk about i get that.. with new pain just now is in my left shoulder running down my arm...

i dont keep going to my docs.... should i keep going... i feel they dont care.. and my depression is getting on amitrypline now at night to 10 mg but take another one for my depression during the day.. im totally fed up with this illness i know i shoud be more positive but when every single day there is something wrong with u when u have a family to think about i should be better but sometimes i just not coping...

hope ur all well and hope to hear from u all soon xx

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5 Replies

  • Posted

    Hi Di

    It is hard to be positive every day with what we all have to put up with.

    Try to take one day at a time and see how it goes. I know how you feel we have had a lot of rain today and both my knees and ankles are playing up. I get pain in my right shoulder at the top but it dosen't run down my arm. That doesn't sound very nice :cry:

    Hopefully you will get some help from your rheum appointment when you go in September. My first one he just took some history and then examined me with the pressure points. He also checked my joints as I have 0A as well and sent me for xrays for that.

    Got my second one in October and waiting to hear from hospital about seeing a podiatrist for my toe. Do you know what they do! I haven't a clue. Need to see them about the tendon in my big toe! :roll:

    You could go and see your doctor if you feel you should about your medications. You don't know whether to go and tell them about the aches and pains once you have been diganosed with fms. They will say thats all it is and nothing they can do but give you pain relief.

    Sometimes you feel you want to go to see them for support. Its difficult to know what to do! What do you think Ses! I would definately go if your depression is gettting worse and see it they can adjust your tablets. There must be something they can do for that!

    We all deal with pain differently and have different levels of pain. Don't feel bad about not coping you are allowed to have off days. Don't be too hard on yourself. :o

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  • Posted

    Hi Di

    Sorry that last message was from me Jane click on it before put my name.

    Keep going you can do it! :o

    Love Jane x x

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  • Posted

    Hi everyone

    Have not had much sleep due to restless legs and the most horrendous thunderstorms in the night that kept the children awake. DLA is a minefield. I managed to get the mobility component after some foot surgery went wrong.

    I was refused at first but went to appeal. I had to go infront of a scolicitor a doctor and a homecare chief. I did get it and was told it should not have even gone as far as appeal. My suggestion is to get as many letters of support from your family and gps etc. I even went as far as getting my local mp involved who wrote letters on my behalf on westminster headed paper!!!!!

    It is dissapointing when you get refused when there are people who have hardly anything wrong with them claiming it. But keep trying there are many appeal rountes to go down and dont give up.

    The problem is fibro is not a very widely know condition so many people will not have heard of it let alone health professionals or the people who sit in their offices making the decisions about these benefits.

    I do hope that you all keep positive and do not let the weather get you all down

    Helen A x

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  • Posted

    Hi Helen

    Good to hear from you. Was good you got your mobility component you deserve it after what happened to your foot through no fault of yours.

    How is your broken toe now? We were lucky didn't get thunderstorms overnight like you. Been raining here on and off all day and did get some thunder this afternoon but nothing major.

    I have had restless legs before you just can't get comfortable in bed and have to get up and walk around. Or take some pain relief. My knees and hip are really hurting tonight with this damp weather.

    Really not looking forward to the winter means more aches and pains always seems worse then. Feel really tired tonight as well won't be long before I go to bed. Nearly forgot to take my ampitripline tablet lol. Only just taken it and like to take it about 7 ish. Oh well at least I remembered. :o

    I hope you have a better night to night.

    Keep smiling :lol:

    Love Jane x x

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  • Posted

    HI there All

    Di, I would insist on seeing another doctor as I feel that you are not getting the support you need, or is there someone that can go with you as moral support as I feel that some doctors seems to listen if someone else is with you!!!!! I went today to the pain consultant and he was a bit obnoxious as he was wondering why I was having another x-ray, the point being the last one was done in may 2007 and I am in much worse restricting pain....... the last appointment I saw the Consultant was with my mum and he seemed more re-assuring and straight to the point, today he said why are you having x-rays as if the osteo has progressed they cannot do a hip replacement as you are too young and he said if I was to have an injection into the joint to ease the pain it would not be worth having as the pain would come back..... I agreed there would be no point at my last appointment!!!!! Anyway taking someone with you may make a difference the Pain Consultant has put me on Lycra so I am wondering whether this will work, I have to wean off gabapentine first? So will start it at the weekend!!!!

    Yes Helen A[quote:116973b658]The problem is fibro is not a very widely know condition so many people will not have heard of it let alone health professionals or the people who sit in their offices making the decisions about these benefits.

    [/quote:116973b658] I found out for instance in Cumbria there is a population of 496,000 and there is 166 sufferers so that is [b:116973b658]1 in 3000 approx [/b:116973b658] so that is why I believe we are not looked at when it comes to the DWP as they do not realize that this condition is a chronic disabling condition and so we find it difficult in obtaining benefits we rightfully are entitled to :twisted: So everyone we need to get this known eh ...... we need to fight for our rights...... easier said than done folks eh, no energy, but we should try and rack our weary brains to see if there is some kind of way to highlight we exist???? only thing is it is hard to do? So we are goosed!!!!!

    Yeah Tess not looking forward to winter too as I feel the coldness gets into every part of our body we will have to get one of those heat wraps when we go out so we would look like michellin we would need it all over and then we would get noticed eh lol :lol:

    Anyway folks hope you all have a good night sleep and I hope the day is warmer for us all tomorrow ....... hugs xxxxx

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