Getting O2 during exericse...

Breezy · Aug 10, 2007

Well for me personally, for the last year I have had low O2 levels but it didn't affect me so no one was concerned. It wasnt until this spring when it began affecting me as my lungs got worse. It was excrutiatingly exhausted, you wouldn't beleive it. I would sleep for 12 hours and wake up feeling like i hadn't slept for days. I would fall asleep at work, while driving. Another indicator to me that i had low O2 was reading that it can cause nightmares, which i began experiencing. I'd have dreams that i couldn't breathe, it was terrible.

It wasn't just being eye-tired, when you can't keep your eyes open: it was physical exhaustion as well. I felt like a wet bag of heavy sand. Every limb was heavy; i had no desire to do anything or go anywhere; i had no motivation, i just wanted to sleep. My body just wanted to lay on the couch. Getting up was a huge task.

Since beginning O2 i feel MUCH better. I am still tired for the most part (as i am only on O2 at night) but that's also b/c my lungs are so bad. My tiredness is tolerable however.

Also, i would notice if i would walk or do anything physical (especially shower!) my legs felt like they'd give out from me at any moment. I still have moments where my knees will give out and i'll kind of bounce. Also, i would get random pains in my body, which my doctor informed me was my body's demand for O2 but i couldn't provide it with. She described it as trying to fuel a machine when you have nothing to give it. It's demanding more than you can provide, and thus you get pain and pulled muscles b/c they're running on nothing.

I hope that was of some help! Feel better!

Breezy · Aug 10, 2007

Well for me personally, for the last year I have had low O2 levels but it didn't affect me so no one was concerned. It wasnt until this spring when it began affecting me as my lungs got worse. It was excrutiatingly exhausted, you wouldn't beleive it. I would sleep for 12 hours and wake up feeling like i hadn't slept for days. I would fall asleep at work, while driving. Another indicator to me that i had low O2 was reading that it can cause nightmares, which i began experiencing. I'd have dreams that i couldn't breathe, it was terrible.

It wasn't just being eye-tired, when you can't keep your eyes open: it was physical exhaustion as well. I felt like a wet bag of heavy sand. Every limb was heavy; i had no desire to do anything or go anywhere; i had no motivation, i just wanted to sleep. My body just wanted to lay on the couch. Getting up was a huge task.

Since beginning O2 i feel MUCH better. I am still tired for the most part (as i am only on O2 at night) but that's also b/c my lungs are so bad. My tiredness is tolerable however.

Also, i would notice if i would walk or do anything physical (especially shower!) my legs felt like they'd give out from me at any moment. I still have moments where my knees will give out and i'll kind of bounce. Also, i would get random pains in my body, which my doctor informed me was my body's demand for O2 but i couldn't provide it with. She described it as trying to fuel a machine when you have nothing to give it. It's demanding more than you can provide, and thus you get pain and pulled muscles b/c they're running on nothing.

I hope that was of some help! Feel better!

Breezy · Aug 10, 2007

Well for me personally, for the last year I have had low O2 levels but it didn't affect me so no one was concerned. It wasnt until this spring when it began affecting me as my lungs got worse. It was excrutiatingly exhausted, you wouldn't beleive it. I would sleep for 12 hours and wake up feeling like i hadn't slept for days. I would fall asleep at work, while driving. Another indicator to me that i had low O2 was reading that it can cause nightmares, which i began experiencing. I'd have dreams that i couldn't breathe, it was terrible.

It wasn't just being eye-tired, when you can't keep your eyes open: it was physical exhaustion as well. I felt like a wet bag of heavy sand. Every limb was heavy; i had no desire to do anything or go anywhere; i had no motivation, i just wanted to sleep. My body just wanted to lay on the couch. Getting up was a huge task.

Since beginning O2 i feel MUCH better. I am still tired for the most part (as i am only on O2 at night) but that's also b/c my lungs are so bad. My tiredness is tolerable however.

Also, i would notice if i would walk or do anything physical (especially shower!) my legs felt like they'd give out from me at any moment. I still have moments where my knees will give out and i'll kind of bounce. Also, i would get random pains in my body, which my doctor informed me was my body's demand for O2 but i couldn't provide it with. She described it as trying to fuel a machine when you have nothing to give it. It's demanding more than you can provide, and thus you get pain and pulled muscles b/c they're running on nothing.

I hope that was of some help! Feel better!

Breezy · Aug 10, 2007

Well for me personally, for the last year I have had low O2 levels but it didn't affect me so no one was concerned. It wasnt until this spring when it began affecting me as my lungs got worse. It was excrutiatingly exhausted, you wouldn't beleive it. I would sleep for 12 hours and wake up feeling like i hadn't slept for days. I would fall asleep at work, while driving. Another indicator to me that i had low O2 was reading that it can cause nightmares, which i began experiencing. I'd have dreams that i couldn't breathe, it was terrible.

It wasn't just being eye-tired, when you can't keep your eyes open: it was physical exhaustion as well. I felt like a wet bag of heavy sand. Every limb was heavy; i had no desire to do anything or go anywhere; i had no motivation, i just wanted to sleep. My body just wanted to lay on the couch. Getting up was a huge task.

Since beginning O2 i feel MUCH better. I am still tired for the most part (as i am only on O2 at night) but that's also b/c my lungs are so bad. My tiredness is tolerable however.

Also, i would notice if i would walk or do anything physical (especially shower!) my legs felt like they'd give out from me at any moment. I still have moments where my knees will give out and i'll kind of bounce. Also, i would get random pains in my body, which my doctor informed me was my body's demand for O2 but i couldn't provide it with. She described it as trying to fuel a machine when you have nothing to give it. It's demanding more than you can provide, and thus you get pain and pulled muscles b/c they're running on nothing.

I hope that was of some help! Feel better!

Breezy · Aug 10, 2007

Well for me personally, for the last year I have had low O2 levels but it didn't affect me so no one was concerned. It wasnt until this spring when it began affecting me as my lungs got worse. It was excrutiatingly exhausted, you wouldn't beleive it. I would sleep for 12 hours and wake up feeling like i hadn't slept for days. I would fall asleep at work, while driving. Another indicator to me that i had low O2 was reading that it can cause nightmares, which i began experiencing. I'd have dreams that i couldn't breathe, it was terrible.

It wasn't just being eye-tired, when you can't keep your eyes open: it was physical exhaustion as well. I felt like a wet bag of heavy sand. Every limb was heavy; i had no desire to do anything or go anywhere; i had no motivation, i just wanted to sleep. My body just wanted to lay on the couch. Getting up was a huge task.

Since beginning O2 i feel MUCH better. I am still tired for the most part (as i am only on O2 at night) but that's also b/c my lungs are so bad. My tiredness is tolerable however.

Also, i would notice if i would walk or do anything physical (especially shower!) my legs felt like they'd give out from me at any moment. I still have moments where my knees will give out and i'll kind of bounce. Also, i would get random pains in my body, which my doctor informed me was my body's demand for O2 but i couldn't provide it with. She described it as trying to fuel a machine when you have nothing to give it. It's demanding more than you can provide, and thus you get pain and pulled muscles b/c they're running on nothing.

I hope that was of some help! Feel better!

coltsfan715 · Aug 11, 2007

I too got the excessuve tiredness. I was actually just like Bree said - where I would sleep 12 + hours a night and would have difficulty waking up in the morning. I didn't put it together until I started waking up with headaches. I had talked to Allie and Amber (beautifulsoul) and each of them indicated that waking up with headaches was a sign of low O2. I thought that may be the problem but wasn't sure. Then when I went for my first transplant appointment and the doc said you are as sick as you can get without being on O2 I asked my CF doc if they could set me up with an overnight oximetry reading.

They set up the overnight reading with a homehealth DME supplier. I think they actually set it up through Lincare, but you could go through whatever company supplies your nebulizer stuff I am sure. They brought out a pulseox to my house and had me wear it through the night and turn in out when I woke up in the morning. Then I had to call them to come pick it up. They read it and sent the results to my doc and I was on O2 at night the next day.

There was also a test they offered for me to test my sats at rest, sleeping and with exertion. I opted against it because when they offered it I was already using O2 full time so there was no need to be tested further. The test would have involved me sitting with the pulse ox for 6 minutes then me walking on the treadmill for 6 minutes and then me sleeping. The funny thing to me was they wanted to tell if I needed O2 and when I said I am already using it so the results would come back inaccurate - they said oh well you would take the O2 off ... ummm why? I know I need it my docs have told me to use it so why am I going to take it off to do a test to tell me yes you do need it lol. Oh well - like I said I didn't do the second test but wanted to put that out there.

I had pretty much all the same symptoms as Bree - except I was not falling asleep while driving or anything like that - just excessively tired. I got aches and pains, weak/heavy legs, fatigue feeling and so on.

Take Care,
Linds

coltsfan715 · Aug 11, 2007

I too got the excessuve tiredness. I was actually just like Bree said - where I would sleep 12 + hours a night and would have difficulty waking up in the morning. I didn't put it together until I started waking up with headaches. I had talked to Allie and Amber (beautifulsoul) and each of them indicated that waking up with headaches was a sign of low O2. I thought that may be the problem but wasn't sure. Then when I went for my first transplant appointment and the doc said you are as sick as you can get without being on O2 I asked my CF doc if they could set me up with an overnight oximetry reading.

They set up the overnight reading with a homehealth DME supplier. I think they actually set it up through Lincare, but you could go through whatever company supplies your nebulizer stuff I am sure. They brought out a pulseox to my house and had me wear it through the night and turn in out when I woke up in the morning. Then I had to call them to come pick it up. They read it and sent the results to my doc and I was on O2 at night the next day.

There was also a test they offered for me to test my sats at rest, sleeping and with exertion. I opted against it because when they offered it I was already using O2 full time so there was no need to be tested further. The test would have involved me sitting with the pulse ox for 6 minutes then me walking on the treadmill for 6 minutes and then me sleeping. The funny thing to me was they wanted to tell if I needed O2 and when I said I am already using it so the results would come back inaccurate - they said oh well you would take the O2 off ... ummm why? I know I need it my docs have told me to use it so why am I going to take it off to do a test to tell me yes you do need it lol. Oh well - like I said I didn't do the second test but wanted to put that out there.

I had pretty much all the same symptoms as Bree - except I was not falling asleep while driving or anything like that - just excessively tired. I got aches and pains, weak/heavy legs, fatigue feeling and so on.

Take Care,
Linds

coltsfan715 · Aug 11, 2007

I too got the excessuve tiredness. I was actually just like Bree said - where I would sleep 12 + hours a night and would have difficulty waking up in the morning. I didn't put it together until I started waking up with headaches. I had talked to Allie and Amber (beautifulsoul) and each of them indicated that waking up with headaches was a sign of low O2. I thought that may be the problem but wasn't sure. Then when I went for my first transplant appointment and the doc said you are as sick as you can get without being on O2 I asked my CF doc if they could set me up with an overnight oximetry reading.

They set up the overnight reading with a homehealth DME supplier. I think they actually set it up through Lincare, but you could go through whatever company supplies your nebulizer stuff I am sure. They brought out a pulseox to my house and had me wear it through the night and turn in out when I woke up in the morning. Then I had to call them to come pick it up. They read it and sent the results to my doc and I was on O2 at night the next day.

There was also a test they offered for me to test my sats at rest, sleeping and with exertion. I opted against it because when they offered it I was already using O2 full time so there was no need to be tested further. The test would have involved me sitting with the pulse ox for 6 minutes then me walking on the treadmill for 6 minutes and then me sleeping. The funny thing to me was they wanted to tell if I needed O2 and when I said I am already using it so the results would come back inaccurate - they said oh well you would take the O2 off ... ummm why? I know I need it my docs have told me to use it so why am I going to take it off to do a test to tell me yes you do need it lol. Oh well - like I said I didn't do the second test but wanted to put that out there.

I had pretty much all the same symptoms as Bree - except I was not falling asleep while driving or anything like that - just excessively tired. I got aches and pains, weak/heavy legs, fatigue feeling and so on.

Take Care,
Linds

coltsfan715 · Aug 11, 2007

I too got the excessuve tiredness. I was actually just like Bree said - where I would sleep 12 + hours a night and would have difficulty waking up in the morning. I didn't put it together until I started waking up with headaches. I had talked to Allie and Amber (beautifulsoul) and each of them indicated that waking up with headaches was a sign of low O2. I thought that may be the problem but wasn't sure. Then when I went for my first transplant appointment and the doc said you are as sick as you can get without being on O2 I asked my CF doc if they could set me up with an overnight oximetry reading.

They set up the overnight reading with a homehealth DME supplier. I think they actually set it up through Lincare, but you could go through whatever company supplies your nebulizer stuff I am sure. They brought out a pulseox to my house and had me wear it through the night and turn in out when I woke up in the morning. Then I had to call them to come pick it up. They read it and sent the results to my doc and I was on O2 at night the next day.

There was also a test they offered for me to test my sats at rest, sleeping and with exertion. I opted against it because when they offered it I was already using O2 full time so there was no need to be tested further. The test would have involved me sitting with the pulse ox for 6 minutes then me walking on the treadmill for 6 minutes and then me sleeping. The funny thing to me was they wanted to tell if I needed O2 and when I said I am already using it so the results would come back inaccurate - they said oh well you would take the O2 off ... ummm why? I know I need it my docs have told me to use it so why am I going to take it off to do a test to tell me yes you do need it lol. Oh well - like I said I didn't do the second test but wanted to put that out there.

I had pretty much all the same symptoms as Bree - except I was not falling asleep while driving or anything like that - just excessively tired. I got aches and pains, weak/heavy legs, fatigue feeling and so on.

Take Care,
Linds

coltsfan715 · Aug 11, 2007

I too got the excessuve tiredness. I was actually just like Bree said - where I would sleep 12 + hours a night and would have difficulty waking up in the morning. I didn't put it together until I started waking up with headaches. I had talked to Allie and Amber (beautifulsoul) and each of them indicated that waking up with headaches was a sign of low O2. I thought that may be the problem but wasn't sure. Then when I went for my first transplant appointment and the doc said you are as sick as you can get without being on O2 I asked my CF doc if they could set me up with an overnight oximetry reading.

They set up the overnight reading with a homehealth DME supplier. I think they actually set it up through Lincare, but you could go through whatever company supplies your nebulizer stuff I am sure. They brought out a pulseox to my house and had me wear it through the night and turn in out when I woke up in the morning. Then I had to call them to come pick it up. They read it and sent the results to my doc and I was on O2 at night the next day.

There was also a test they offered for me to test my sats at rest, sleeping and with exertion. I opted against it because when they offered it I was already using O2 full time so there was no need to be tested further. The test would have involved me sitting with the pulse ox for 6 minutes then me walking on the treadmill for 6 minutes and then me sleeping. The funny thing to me was they wanted to tell if I needed O2 and when I said I am already using it so the results would come back inaccurate - they said oh well you would take the O2 off ... ummm why? I know I need it my docs have told me to use it so why am I going to take it off to do a test to tell me yes you do need it lol. Oh well - like I said I didn't do the second test but wanted to put that out there.

I had pretty much all the same symptoms as Bree - except I was not falling asleep while driving or anything like that - just excessively tired. I got aches and pains, weak/heavy legs, fatigue feeling and so on.

Take Care,
Linds

tara · Aug 11, 2007