can someone help answer my question

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hi was at my doc today and he is sending me to a senior physio who specialises in fibro.. im awaiting on a rhumatolidgy appointment....my doc thinks its fibro i have. i dont seem to have alot of the fibro soft spots but have all the other symptoms the severe pains all over and in hands and legs and feet... does everyone have the soft spots??b8j5r

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  • Posted

    pain points are certainly a major part in diagnosing fibromyalgia. There are 18 specific points a doctor will test. 11 of them must be painful for diagnosis. So not really sure its fibro you got. A specialist will certainly know if it is
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  • Posted

    Hi Di

    It took a year for me to be diagnosed, and my pains seem to move around, they do however stay in some regions, like my hip and my knee, but my pain moves to my neck and even to my big toe!!! Walking can be troublesome, especially when the weather fluctuates, as this is when I seem to feel the pain worse and if there is stress in the house I feel pain in every bone in my body!!!!!! anyway, I had seen several so called specialists before I had someone listening to me, my advice is to write a diary of how things effect you, and don't be fobbed off as some medical professionals seem to be not interested, hopefully you will get better treatment than I did? and I hope you get your answers quicker than what I did!!! If your doctor doesn't listen then change him/her as I did a few times and it paid off in the end!!!!! The disease is not a nice one, so you need to battle with it and battle to get the right treatment to make it a bit easier!!!!!

    Kind Regards

    SES

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  • Posted

    hi ses

    thank u so much for replying by the way i get most pain down my left arm and hand..oh and my big toe lol..anyway... husband took me away to alovely hotel at lake windermere for 2 nights mon tues...by wed i couldnt even get up for breakfast.. got home around 5pm went to bed at 7 woke at 10 with a raging sore throat and been in bed till thurs at 7.. got aletter from dla... saying there waiting on my own gp to write to them.. the thing is i havent seen him that much saw others in the practice... i know now i wont get it... i feel all this pain is for nothing... i just want to not wake up..i feel really down at the moment and feel i have put all my family through to much.. hope ur day is better than mine x

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  • Posted

    Hi Di

    No my pain is excruciating at the moment as I think it is due to stopping taking the Amitryptiline as I was having trouble breathing and when I went to my GP he said it could be the anti-inflammatories, but when I stopped taking these I still had breathing difficulities? So I stopped the amitryptiline as I had read that if you have thyroid disorders it can effect you? I did feel sick for about three days coming off them but my breathing has got better but my pain is worse than ever, I feel its worse than before I started on any sleeping tablets!!!!!! Nightmare

    [quote:b5cfc057c2] i just want to not wake up[/quote:b5cfc057c2] I felt like this before hand when I was unsure what was going on.... did you watch \"This Morning\" as Jo Guest (topless model previously)was on there and she felt like she was dying as both myself and you have felt, she has battled this \"mystery illness\" that took her a year to get diagnosed like myself...............I to be honest have changed my atitude now I know what I have got as I just expect all these horrible feeling as it goes with the territory unfortunately, I try and focus on something else as this is what you are suppose to do, try and do something to get you brain working so your not kind of concentrating on the pain!!!! I do brain training on DS or card making, nothing strenuous as I basically couldn't do it, but I have found having something to do switches the pain off for a short while!!

    As with DLA this annoys me as I am unable to walk without being in severe pain due to pain in my hip and knee and my knee often gives way, and yet as I have appealed I not eligible for the mobility component, but yet I am entitled to the care component???? I am fighting this as I do not care how long it takes as if these so called Appeal boards could live inside my body for a day they would realize that this illness is awful!!!! :evil:

    Anyway Di at least you have your support from your family keep smiling hun and have a chat with your GP how you feel as you may need to change your medication like I do.......I am back at the Doctors next tuesday XX

    Take care x :wink:

    SES

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  • Posted

    hi ses

    thank u so much for replying..spent my day crying today..got my disabled badge through although i should be happy its kinda brought it to be real... anyway i think we should all get together and fight the goverment on our illness as we should get dla and mobility... i know people who get it and i see them running around. makes me sick..anyway enough of my moaning i will try and do something to get my brain going..think i lost that ages ago mind lol... anyway.... hugs for all who are in pain today..keep smiling and keep in touch... it def helps xxx

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  • Posted

    HI Di

    yeah this is an awful disease and I have phoned my local paper today as I am trying to set up a support group to help people with our condition as you know like me it is a nasty disease, I feel about 70 not 35 as I have to have a walking stick to help me due to the pain in my hip..... I lost my job because of the time I was off as I have trouble getting up stairs and as it was my dept was top floor and so couldn't make it , as well as the lack of sleep and brain fog there was no way I could function......... I loved my job as I thought I had a real career working in a Building Society, but to no avail this disease took a grip of me and then that was it!!!!!!!

    Some days I can hardly move? I am so weak and others the pain is so severe no two days are the same!!!!!! So all we can do is accept it, but it isn't fair when we have to fight to get what is rightfully ours as it annoys me too that people take the mick out of the benefit system and genuine case like us have to suffer!!!!! I am fighting for the DLA as I am fighting this disease........ and so I am wanting to set a support group to help others in my area, as not even some of the medical profession let alone government departments even recognize this as a disability?

    While I was making phone calls today for community centers and local newspapers they didn't have a clue!!!!!! and so I am going to be in my local newspaper to do a story and to promote if people would like to come to the group ? basically hoping to get more awareness of Fibromyalgia, as Fibromyalgia awareness day is May 12th !!!!!

    I hope you are having a better day than me xxx

    SES

    8)

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  • Posted

    hi ses

    i walk with a crutch all the time just like u... my left side hip and back... along with all my other aches and pains.... i dont know what area u live in im in edinburgh but i would love to promote fibro... i get really annoyed that people stop me and say..oh u hurt ur leg..i wish thats all i had.. and if i mention what ive got they havent a clue.. By the way i did see that programme on this morning and its unbelievable that people have different most pain points but all have the same symptoms.. if u need any help with ur may day just let me know.. x x hope ur day is a good one for u.. if tht makes sense..do we have any REAL good days..its just a better day that u have with just a little of less pain... good luck in all ur hard work x

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  • Posted

    Oh Bless you Di

    You should become a member on here then you can keep track of our convo, I live near the Lake District so I suppose not to far? lol although it would take me about 10 years to get to you as I don't drive and walking with my crutch!!!LOL

    [quote:4abbc87c93]i walk with a crutch all the time just like u... my left side hip and back... along with all my other aches and pains...[/quote:4abbc87c93]

    How bizzarre is that ........it is my left hip and back, etc.......... O M G? I have wrote a story for my local Newspaper and I cried when I read it back, being 35 and feeling 70 is rather crap eh?

    [quote:4abbc87c93]do we have any REAL good days..its just a better day that u have with just a little of less pain... [/quote:4abbc87c93] I agree too, we just have to live from day to day!!!!

    Yes I have that aswell, what have you done to your leg?????

    Anyway hun it is late, so I guess I had better goto bed, If I can sleep? take care, and hope you have a good night sleep too xx chat to you soon x

    Regards

    SES

    smile

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  • Posted

    hi ses

    it was the lake district at lake windermere that i was there mon till wed..but the travelling killed me... how do u go about joining on here then....

    i was awake till 530am this morning in terrible pain..restless legs i was wanting to call a doc out... im tired now so i think i will get to bed.... hope ur day goes ok x

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  • Posted

    Hi there Di,

    On the home page of Patient uk on the left hand side first heading there is register and then just take it from there hun......... as you can easily keep up with your convos and check other topics that may relate to your condition? I guess you are having a bad day for you having to go back to bed as I was like that yesterday, I felt terrible, like a lead weight somehow? but with pain!!!!

    Yeah Windermere is not too far smile on my more healthier days I used to work up there in a hotel, my sister still does she is a manager there :lol:

    I hope you feel better soon x

    SES

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