can someone describe how their pain is

Posted , 2 users are following.

Hi there everyone.. im really confused at the moment... i can wake up in the morning and although im always sore with sleeping somedays im in chronic pain all over it reaches such a peak that i cant even concentrate now this might go on til about 6pm then its like someone has taken my batteries out and although i feel fatigued the pain isnt half as bad... does anyone out there feel the same.. im starting to think what is actually wrong with me. is it fibro have i got something else is it in my head ( although that pain cant possibly be).. please can some on help me on this. i feel how can pain do this to u then suddenly leave.... by the way i got a foam thin mattress from social care and it def helps how u feel in the morning... so i would advise people to find out about this... I also got high rate disablility but never got any care part of the benefit so putting in a appeal as i do need help cooking and showering.. so keep in touch and lets help each other understand what we are going through xx

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  • Posted

    Hi there Di,

    I have been feeling ok these past two days., due to the warm weather....... the first since 18 months ago before the pain all began but I can feel it slowly creep up now that the weather has gone from hot to cold........ I feel totally drained though so that is how I know I am getting ready for a flair!!!!!

    Well done receiving DLA mobility component, I get LRC but no Mobility and so I am getting help from an independent guy that fights the case for you, there is a fee, but it appears he does know what he is talking about as my appeal was sent to the commissioner through Law or something and all the decision made by this was reversed and I am going to another appeal not the commissioner, their was errors made in their judgments and this Guy picked these errors up so hopefully I can get further help?

    Appealing is not a nice thing, they try and fob you off I think and I think some advisers do not know the rules as I spoke to a benefits adviser and she said that I was unable to submit further evidence as they would go by what was written at the beginning in my original application form, even if I had submitted further views of how my condition was getting worse they would not take later evidence into account, seemingly this does not apply as I asked this guys secretary as I wasn't sure whether my case would have good ground for appeal, as it is very confusing!!!!! I wait now for my appeal date!!!!!

    If you are under stress for instance my daughters arguing really penetrates my skin into the joints, it's like the nerves being pulled without being touched, a kind of toothache pain, but when stressed it can effect you from head to toe and a pain can appear again for no apparent reason??? In any part of your body!!!! Your memory can be sharp one minute and totally fuzzy the next..... all part and parcel of Fibromyalgia. I just except it now as that is all we can do :oops:

    Take care and thanks for reading xxxxx

    Kind regards

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  • Posted

    hi ses

    i was just wondering how u were doing, i have had a bad few weeks but the last 2 days havent been to bad... sometimes i think.... oh has it left me, then bang it hits again.. i am in pain all the time but i was getting confused as i didnt know if people got flareups with fibro... i went to bed last night at 8pm and even though i woke a few times i never got out of bed till 11am.. and i still feel tired..amazing eh.... so i hope i find u in not so much pain..and not so stressed out... hope to catch up with u soon xb

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  • Posted

    Hi Di xx

    Yeah it is a flair when you are having a worse time!! I am feeling warn out gain I had a good sleep too I feel it is probably due to the drop in temperature? unfortunately some days are better than others we cannot predict what we can do another day in case we have a flair!!!! So we are told to pace ourselves!!!

    I had my first group metting yesterday and in the future I am hoping to get a local doctor to do a talk for us so that will be very helpful and interesting!

    I do hope you are feeling better Di, pace your self hun as that is all we can do xxx

    Regards

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  • Posted

    hi ses

    thank u so much for replying i think ur right when u say a flair up as that seems to happen to me..i am in pain everyday but somedays i am in so much pain and the fatigue just feels like someone has taken the batteries out .. that would be good if u could get a doctor to talk.. i would be interested to see what a british doctor thought about fibro..as everything i have looked at on the internet seems to be american.i have taken up card craft making but i can only do small bits at a time as sitting is sore on my back.. wishing u all the best with ur meetings..ur doing a great job xx

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  • Posted

    Hi there Di,

    I say it is as though someone has pulled the plug out!!!!! and we agreed at our group the pain to describe is like burning toothache!!!!! Some days are better than others good days are ok but bad days are well not what you call a nice time.

    I had some side effects from my medication for my Fibro, probably due to my thyroid causing havoc and the side effects were awful, I couldnt breath properly.......when I explained this to my nurse she said it is due to the Fibro as it effects your muscles????????

    One lady at the group has the pain in her head, another lady started in her hip the same as mine???? and the lady having hip pain agreed with me you kind of have no circulation in some areas, as it burns but it is ice cold to touch!!! I wake up and my hands and elbows I cannot move for sometime too, all part and parcel of this evil illness.

    I think Sharing is good with this as we do feel like we are kind of going mad!!!! at least we know others ar in the same boat!!!!! I can hardly walk on my bad days!!!!!

    I hope you are having a better time than me xxxx

    Take care x

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  • Posted

    Hi there Di,

    I say it is as though someone has pulled the plug out!!!!! and we agreed at our group the pain to describe is like burning toothache!!!!! Some days are better than others good days are ok but bad days are well not what you call a nice time.

    I had some side effects from my medication for my Fibro, probably due to my thyroid causing havoc and the side effects were awful, I couldnt breath properly.......when I explained this to my nurse she said it is due to the Fibro as it effects your muscles????????

    One lady at the group has the pain in her head, another lady started in her hip the same as mine???? and the lady having hip pain agreed with me you kind of have no circulation in some areas, as it burns but it is ice cold to touch!!! I wake up and my hands and elbows I cannot move for sometime too, all part and parcel of this evil illness.

    I think Sharing is good with this as we do feel like we are kind of going mad!!!! at least we know others ar in the same boat!!!!! I can hardly walk on my bad days!!!!!

    I hope you are having a better time than me xxxx

    Take care x

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