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Thread: Glad to be diagnosed

  1. #11
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    Yeah Sangye, I was thinking that if a whole bunch of us felt our symptoms on that schedule (it would probaby NOT be something that we'd tell our docs and therefore not something they would document, as when we speak to them there is usually a miriad of other more important things we would like to say) if it's something that might give doctors a clue as to the disease process and get them one step closer to an answer. You know me, always dreaming the big dream. ha ha.

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    Unfortunately it's not at all unique to Wegs. People with cancer often have increased pain at night, too. It's one of those signs that medical doctors do not have an explanation for, so they generally ignore it.

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    Hi Geoff, Well you have just describe the jiont pai that i'm having to a tee. It begins worse in the evenings can't use my fingers, no strength in then at all and yes getting those bloody pills out of the fiol i dread getting out the bed to go to the loo because of the problems getting back!!. But still count my self lucky that i haven't had the horrendous problems that others have had on here.

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    Quote Originally Posted by Sangye View Post
    Unfortunately it's not at all unique to Wegs. People with cancer often have increased pain at night, too. It's one of those signs that medical doctors do not have an explanation for, so they generally ignore it.
    hmmm. wouldn't it be nice to just ignore problems and pretend they don't exist just because you have no explanation for it. too bad we can't do that.

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    The thought that has occupied my mind is that we present ourselves to the Doc with almost a conditioned response to 'How do you Feel'. We struggle to come to terms with the wierd aches and pains and rationlise the whole or Big Picture. We are conditioned from our mothers knee not to moan about 'little aches and pains' and to 'put on a brave face'. Over 2 years since DX, and I have had a very good remission apart from one heavy flare exactly a year ago which needed Cyclosulphamide infusions over 3 months to quiten down. Plain sailing from then to now as I managed to get my pred down to 5mg and hospital visits to almost 3 month intervals. The 'Holy Grail' was in sight!!.... and then MBF crept up on me unnoticed. I am fortunate to still be able to go to work and to all outward appearances enjoy a 'normal' life, so I put my general health issues down to me trying to live to previous expectations. The joint pain was a very unwelcome vistitor the other weekend and I suddenly felt very vulnerable. Its true to say that I have turned a blind eye to the inevitable hold this illness has over us. Fortuantely I was tended to very quickly by Addenbrookes and for the moment an increase in pred seems to be doing the business. Had a letter this week to invite me in on Monday for a CT scan and starting to feel upbeat again. Its nice to be wanted!! Sorry to blag on, I know that so many of you are far worse off than me and wonder why I am simpering on. I am with you all the way and pray for our 'Big extended Family'

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    It's nice to hear from you Geoff and I hardly have any symptoms except sinus stuff but I had endured severe Wg symptoms and so glad today I am at a point where I feel pretty good. So continue to Blag on!

  7. #17
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    Quote Originally Posted by Geoff View Post
    The thought that has occupied my mind is that we present ourselves to the Doc with almost a conditioned response to 'How do you Feel'. We struggle to come to terms with the wierd aches and pains and rationlise the whole or Big Picture. We are conditioned from our mothers knee not to moan about 'little aches and pains' and to 'put on a brave face'. Over 2 years since DX, and I have had a very good remission apart from one heavy flare exactly a year ago which needed Cyclosulphamide infusions over 3 months to quiten down. Plain sailing from then to now as I managed to get my pred down to 5mg and hospital visits to almost 3 month intervals. The 'Holy Grail' was in sight!!.... and then MBF crept up on me unnoticed. I am fortunate to still be able to go to work and to all outward appearances enjoy a 'normal' life, so I put my general health issues down to me trying to live to previous expectations. The joint pain was a very unwelcome vistitor the other weekend and I suddenly felt very vulnerable. Its true to say that I have turned a blind eye to the inevitable hold this illness has over us. Fortuantely I was tended to very quickly by Addenbrookes and for the moment an increase in pred seems to be doing the business. Had a letter this week to invite me in on Monday for a CT scan and starting to feel upbeat again. Its nice to be wanted!! Sorry to blag on, I know that so many of you are far worse off than me and wonder why I am simpering on. I am with you all the way and pray for our 'Big extended Family'
    I'm totally with you there. I'm so afraid that someone will think I'm being a hypochondriac that I tend to downplay my symptoms. I think that honestly, in my case, it's because my parents are both nurses and I grew up hearing the horror stories about people going on at length about issues that they didn't really have. So I conditioned myself eventually to tend to ignore things, that and I have a relatively high level of pain tolerance. That said my parents are the first to tell me I should be telling the doctor all my symptoms, so it's really my own psychosis on that part

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    Sangye - I always tell people that possibly one of the reasons that the pain increases at night is less items for the mind to focus on ( number of people, how many are blond, brunette, are you hungry, etc... during the day) and a common focus to turn inward..( thoughts, pains, aches, breathing, etc...) due to less distractions... It seems to make sense....

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    Oh, it definitely wasn't the case with me. There just aren't enough distractions in the world to drown out the kind of pain I was in!

    I seem to recall learning an explanation of the increased pain at night for people with cancer, but I don't remember it, and don't remember if it was a holistic explanation or medical.

  10. #20
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    Quote Originally Posted by Sangye View Post
    Oh, it definitely wasn't the case with me. There just aren't enough distractions in the world to drown out the kind of pain I was in!
    Ahmen to that Sangye!
    Stop me if I have missed something posted somewhere, but has anybody come up with a definitive reason as to why this joint pain( and muscular for that) increases in intensity at almost definable times of the day (for me, late afternoon and then intensifying thru the night) only to dissapate come the morning?
    I recall the blank expression on a doctors face (before my DX) when i was trying to gather together all the variety of syptioms for an explanation.

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