Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Vicky, Hi Sweetie. My doc says the back pain isn't the IPF either, but I'm not buying it. I think there are too many of us suffering from between-the-shoulder pain for it not to be. My worst pain has coincided with my diagnosis, and been pretty consistent over the 3 years since. I know the lungs don't have nerve endings, but it just makes sense that as we use different muscles to BREATHE in the upper parts of our backs, some discomfort results.That's my opinion and I'm sticking with it. Of course, hauling around portables and coughing don't make things any easier. These can be killer backaches, & frequently just standing up can really hurt! I can take only Extra-Strength Tylenol vs. Motrin (which would be better) but the thing that helps most is my moist heating pad, or if I'm incapacitated, rotating heat with cold packs. Hope you're having a good week. Joyce, During a 6MW, my tech always tells me to pace myself or even stop if necessary, but to walk as fast as I can comfortably walk. However, my sats never fall as far as they do when I'm home doing something mundane like walking from the bed to the bathroom. Like you say, makes you question the value of the test... well, we know it's primarily for insurance companies. grrrrr. Troops, Ditto the recommendation to have a nocturnal oximetry test done by a pulmonologist to see what our sleeping sats are. That's the time when concern is usually greatest about respiratory failure. - Okay, I'll bite --- is a " spliff " a joint? I too am a child of the 70's (college years), although no one seems to believe that there was ever any hippy in this girl. To those who feel they need oxygen only some of the time, I'm suggesting that you really look at being evaluated for oxygen therapy. The mistake most people make is waiting too long, until they're desperate and their quality of life has suffered, before they're willing to use it or before their docs suggest it, particularly non-pulmonary specialists. In fact, even the liter flow of our oxygen (those of us who are on it) is pretty much determined by how we feel, not on what the doc thinks. They listen and trust us to make that determination based on what we're able to do and what gets us winded, particularly as we progress to another plateau. As we move from one liter flow to another, our sob is still the most reliable test they have to prescribe how much 02 we need. I started out at 2L (liters) on pulse three years ago, 4L with exertion; now I'm on 10-15 with exertion, 6 at rest and 5 at night (all set on continuous flow). We need to speak up when we feel our liter flow isn't cutting it any more. I'm only speaking for IPF here. For those of us who made the decision to use oxygen, as much as we hated it and as cumbersome as it is, it has become our best friend in terms of mobility and energy level. It's actually prolonging our lives, when you realize what " air hunger " does to all the body's organ systems (shuts down or overstresses them), particularly the heart and brain. Please don't try to talk yourself out of it if you think there's a chance you would function better with the help of oxygen. It can greatly enhance your quality of life. And if you feel that it WOULD help you to live better- if your sob is changing the way you live - get a second opinion if someone tells you otherwise. Hugs and blessings, Gwynne IPF 7/04 listed for transplant 3/07 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Hi Gwynne, oooooh you WILD child you got it a 'spliff' Is a 'joint' & NOT the arthritic variety!!!!! > > > Vicky, > Hi Sweetie. My doc says the back pain isn't the IPF > either, but I'm not buying it. I think there are too > many of us suffering from between-the-shoulder > pain for it not to be. My worst pain has coincided > with my diagnosis, and been pretty consistent over > the 3 years since. I know the lungs don't have > nerve endings, but it just makes sense that as we > use different muscles to BREATHE in the upper parts of > our backs, some discomfort results.That's my opinion > and I'm sticking with it. Of course, hauling around > portables and coughing don't make things any > easier. These can be killer backaches, & frequently just > standing up can really hurt! > I can take only Extra-Strength Tylenol vs. Motrin (which > would be better) but the thing that helps most is my > moist heating pad, or if I'm incapacitated, rotating > heat with cold packs. > Hope you're having a good week. > > Joyce, > During a 6MW, my tech always tells me to pace myself > or even stop if necessary, but to walk as fast as I can > comfortably walk. However, my sats never fall as far as > they do when I'm home doing something mundane like > walking from the bed to the bathroom. Like you say, > makes you question the value of the test... well, we > know it's primarily for insurance companies. grrrrr. > > Troops, > Ditto the recommendation to have a nocturnal oximetry test > done by a pulmonologist to see what our sleeping sats are. > That's the time when concern is usually greatest about > respiratory failure. > > - Okay, I'll bite --- is a " spliff " a joint? I too am > a child of the 70's (college years), although no one > seems to believe that there was ever any hippy in > this girl. > > To those who feel they need oxygen only some > of the time, I'm suggesting that you really look > at being evaluated for oxygen therapy. The mistake > most people make is waiting too long, until they're > desperate and their quality of life has suffered, before > they're willing to use it or before their docs suggest > it, particularly non-pulmonary specialists. > In fact, even the liter flow of our oxygen (those of us > who are on it) is pretty much determined by how > we feel, not on what the doc thinks. They listen and > trust us to make that determination based on what > we're able to do and what gets us winded, particularly > as we progress to another plateau. As we move from > one liter flow to another, our sob is still the most reliable > test they have to prescribe how much 02 we need. > I started out at 2L (liters) on pulse three years ago, 4L > with exertion; now I'm on 10-15 with exertion, 6 at > rest and 5 at night (all set on continuous flow). We need > to speak up when we feel our liter flow isn't cutting it any > more. I'm only speaking for IPF here. > For those of us who made the decision to > use oxygen, as much as we hated it and as cumbersome > as it is, it has become our best friend in terms of mobility > and energy level. It's actually prolonging our lives, when > you realize what " air hunger " does to all the body's organ > systems (shuts down or overstresses them), particularly the > heart and brain. Please don't try to talk yourself out of it > if you think there's a chance you would function better > with the help of oxygen. It can greatly enhance your > quality of life. And if you feel that it WOULD help you to > live better- if your sob is changing the way you live - > get a second opinion if someone tells you otherwise. > > Hugs and blessings, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Hi Gwynne, oooooh you WILD child you got it a 'spliff' Is a 'joint' & NOT the arthritic variety!!!!! > > > Vicky, > Hi Sweetie. My doc says the back pain isn't the IPF > either, but I'm not buying it. I think there are too > many of us suffering from between-the-shoulder > pain for it not to be. My worst pain has coincided > with my diagnosis, and been pretty consistent over > the 3 years since. I know the lungs don't have > nerve endings, but it just makes sense that as we > use different muscles to BREATHE in the upper parts of > our backs, some discomfort results.That's my opinion > and I'm sticking with it. Of course, hauling around > portables and coughing don't make things any > easier. These can be killer backaches, & frequently just > standing up can really hurt! > I can take only Extra-Strength Tylenol vs. Motrin (which > would be better) but the thing that helps most is my > moist heating pad, or if I'm incapacitated, rotating > heat with cold packs. > Hope you're having a good week. > > Joyce, > During a 6MW, my tech always tells me to pace myself > or even stop if necessary, but to walk as fast as I can > comfortably walk. However, my sats never fall as far as > they do when I'm home doing something mundane like > walking from the bed to the bathroom. Like you say, > makes you question the value of the test... well, we > know it's primarily for insurance companies. grrrrr. > > Troops, > Ditto the recommendation to have a nocturnal oximetry test > done by a pulmonologist to see what our sleeping sats are. > That's the time when concern is usually greatest about > respiratory failure. > > - Okay, I'll bite --- is a " spliff " a joint? I too am > a child of the 70's (college years), although no one > seems to believe that there was ever any hippy in > this girl. > > To those who feel they need oxygen only some > of the time, I'm suggesting that you really look > at being evaluated for oxygen therapy. The mistake > most people make is waiting too long, until they're > desperate and their quality of life has suffered, before > they're willing to use it or before their docs suggest > it, particularly non-pulmonary specialists. > In fact, even the liter flow of our oxygen (those of us > who are on it) is pretty much determined by how > we feel, not on what the doc thinks. They listen and > trust us to make that determination based on what > we're able to do and what gets us winded, particularly > as we progress to another plateau. As we move from > one liter flow to another, our sob is still the most reliable > test they have to prescribe how much 02 we need. > I started out at 2L (liters) on pulse three years ago, 4L > with exertion; now I'm on 10-15 with exertion, 6 at > rest and 5 at night (all set on continuous flow). We need > to speak up when we feel our liter flow isn't cutting it any > more. I'm only speaking for IPF here. > For those of us who made the decision to > use oxygen, as much as we hated it and as cumbersome > as it is, it has become our best friend in terms of mobility > and energy level. It's actually prolonging our lives, when > you realize what " air hunger " does to all the body's organ > systems (shuts down or overstresses them), particularly the > heart and brain. Please don't try to talk yourself out of it > if you think there's a chance you would function better > with the help of oxygen. It can greatly enhance your > quality of life. And if you feel that it WOULD help you to > live better- if your sob is changing the way you live - > get a second opinion if someone tells you otherwise. > > Hugs and blessings, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Hi Gwynne, oooooh you WILD child you got it a 'spliff' Is a 'joint' & NOT the arthritic variety!!!!! > > > Vicky, > Hi Sweetie. My doc says the back pain isn't the IPF > either, but I'm not buying it. I think there are too > many of us suffering from between-the-shoulder > pain for it not to be. My worst pain has coincided > with my diagnosis, and been pretty consistent over > the 3 years since. I know the lungs don't have > nerve endings, but it just makes sense that as we > use different muscles to BREATHE in the upper parts of > our backs, some discomfort results.That's my opinion > and I'm sticking with it. Of course, hauling around > portables and coughing don't make things any > easier. These can be killer backaches, & frequently just > standing up can really hurt! > I can take only Extra-Strength Tylenol vs. Motrin (which > would be better) but the thing that helps most is my > moist heating pad, or if I'm incapacitated, rotating > heat with cold packs. > Hope you're having a good week. > > Joyce, > During a 6MW, my tech always tells me to pace myself > or even stop if necessary, but to walk as fast as I can > comfortably walk. However, my sats never fall as far as > they do when I'm home doing something mundane like > walking from the bed to the bathroom. Like you say, > makes you question the value of the test... well, we > know it's primarily for insurance companies. grrrrr. > > Troops, > Ditto the recommendation to have a nocturnal oximetry test > done by a pulmonologist to see what our sleeping sats are. > That's the time when concern is usually greatest about > respiratory failure. > > - Okay, I'll bite --- is a " spliff " a joint? I too am > a child of the 70's (college years), although no one > seems to believe that there was ever any hippy in > this girl. > > To those who feel they need oxygen only some > of the time, I'm suggesting that you really look > at being evaluated for oxygen therapy. The mistake > most people make is waiting too long, until they're > desperate and their quality of life has suffered, before > they're willing to use it or before their docs suggest > it, particularly non-pulmonary specialists. > In fact, even the liter flow of our oxygen (those of us > who are on it) is pretty much determined by how > we feel, not on what the doc thinks. They listen and > trust us to make that determination based on what > we're able to do and what gets us winded, particularly > as we progress to another plateau. As we move from > one liter flow to another, our sob is still the most reliable > test they have to prescribe how much 02 we need. > I started out at 2L (liters) on pulse three years ago, 4L > with exertion; now I'm on 10-15 with exertion, 6 at > rest and 5 at night (all set on continuous flow). We need > to speak up when we feel our liter flow isn't cutting it any > more. I'm only speaking for IPF here. > For those of us who made the decision to > use oxygen, as much as we hated it and as cumbersome > as it is, it has become our best friend in terms of mobility > and energy level. It's actually prolonging our lives, when > you realize what " air hunger " does to all the body's organ > systems (shuts down or overstresses them), particularly the > heart and brain. Please don't try to talk yourself out of it > if you think there's a chance you would function better > with the help of oxygen. It can greatly enhance your > quality of life. And if you feel that it WOULD help you to > live better- if your sob is changing the way you live - > get a second opinion if someone tells you otherwise. > > Hugs and blessings, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
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