no energy

[kmaried]

Hi!

I have one more possibility to add... CF related Arthritis. No one knows too much about this and there is a lot of conflicting information out there about it. But basically, I got my lung function higher than it had been in a while and my whole body hurt - joints and muscles alike, and sometimes I felt like one big bruise. I finally went to a rheumatoligist (on my cf doc's suggestion) since I was beginning to take ibuprofen, and even prednisone or perkacet for when it got really bad. (It would happen in 'flares') I'm not sure if yours is permanent or comes and goes. Anyway, the rheumotoligist said I have adult onset still's disorder bordering on lupus (both autoimmune disorders). My cf doc doesn't agree with this -- that it's not some other disease -- just an autoimmune response to the CF. Basically since our immune systems never get the chance to turn off like normal people's they can freak out at times.

Anyway, I was put on plaquenil and for the first time in years I'm not getting flare-ups all the time anymore and when I do get them they're fairly mild. Just another idea!!

Good luck -- I know how much this sucks and can interfere with your daily life! I used to just lie around all day because doing anything (even breathing at times) hurt.

~Kris

 

[kmaried]

Hi!

I have one more possibility to add... CF related Arthritis. No one knows too much about this and there is a lot of conflicting information out there about it. But basically, I got my lung function higher than it had been in a while and my whole body hurt - joints and muscles alike, and sometimes I felt like one big bruise. I finally went to a rheumatoligist (on my cf doc's suggestion) since I was beginning to take ibuprofen, and even prednisone or perkacet for when it got really bad. (It would happen in 'flares') I'm not sure if yours is permanent or comes and goes. Anyway, the rheumotoligist said I have adult onset still's disorder bordering on lupus (both autoimmune disorders). My cf doc doesn't agree with this -- that it's not some other disease -- just an autoimmune response to the CF. Basically since our immune systems never get the chance to turn off like normal people's they can freak out at times.

Anyway, I was put on plaquenil and for the first time in years I'm not getting flare-ups all the time anymore and when I do get them they're fairly mild. Just another idea!!

Good luck -- I know how much this sucks and can interfere with your daily life! I used to just lie around all day because doing anything (even breathing at times) hurt.

~Kris

 

[kmaried]

Hi!

I have one more possibility to add... CF related Arthritis. No one knows too much about this and there is a lot of conflicting information out there about it. But basically, I got my lung function higher than it had been in a while and my whole body hurt - joints and muscles alike, and sometimes I felt like one big bruise. I finally went to a rheumatoligist (on my cf doc's suggestion) since I was beginning to take ibuprofen, and even prednisone or perkacet for when it got really bad. (It would happen in 'flares') I'm not sure if yours is permanent or comes and goes. Anyway, the rheumotoligist said I have adult onset still's disorder bordering on lupus (both autoimmune disorders). My cf doc doesn't agree with this -- that it's not some other disease -- just an autoimmune response to the CF. Basically since our immune systems never get the chance to turn off like normal people's they can freak out at times.

Anyway, I was put on plaquenil and for the first time in years I'm not getting flare-ups all the time anymore and when I do get them they're fairly mild. Just another idea!!

Good luck -- I know how much this sucks and can interfere with your daily life! I used to just lie around all day because doing anything (even breathing at times) hurt.

~Kris

 

[kmaried]

Hi!

I have one more possibility to add... CF related Arthritis. No one knows too much about this and there is a lot of conflicting information out there about it. But basically, I got my lung function higher than it had been in a while and my whole body hurt - joints and muscles alike, and sometimes I felt like one big bruise. I finally went to a rheumatoligist (on my cf doc's suggestion) since I was beginning to take ibuprofen, and even prednisone or perkacet for when it got really bad. (It would happen in 'flares') I'm not sure if yours is permanent or comes and goes. Anyway, the rheumotoligist said I have adult onset still's disorder bordering on lupus (both autoimmune disorders). My cf doc doesn't agree with this -- that it's not some other disease -- just an autoimmune response to the CF. Basically since our immune systems never get the chance to turn off like normal people's they can freak out at times.

Anyway, I was put on plaquenil and for the first time in years I'm not getting flare-ups all the time anymore and when I do get them they're fairly mild. Just another idea!!

Good luck -- I know how much this sucks and can interfere with your daily life! I used to just lie around all day because doing anything (even breathing at times) hurt.

~Kris

 

[kmaried]

Hi!

I have one more possibility to add... CF related Arthritis. No one knows too much about this and there is a lot of conflicting information out there about it. But basically, I got my lung function higher than it had been in a while and my whole body hurt - joints and muscles alike, and sometimes I felt like one big bruise. I finally went to a rheumatoligist (on my cf doc's suggestion) since I was beginning to take ibuprofen, and even prednisone or perkacet for when it got really bad. (It would happen in 'flares') I'm not sure if yours is permanent or comes and goes. Anyway, the rheumotoligist said I have adult onset still's disorder bordering on lupus (both autoimmune disorders). My cf doc doesn't agree with this -- that it's not some other disease -- just an autoimmune response to the CF. Basically since our immune systems never get the chance to turn off like normal people's they can freak out at times.

Anyway, I was put on plaquenil and for the first time in years I'm not getting flare-ups all the time anymore and when I do get them they're fairly mild. Just another idea!!

Good luck -- I know how much this sucks and can interfere with your daily life! I used to just lie around all day because doing anything (even breathing at times) hurt.

~Kris

 

[johannaleigh]

Have you been checked for sinus poylops( I don't know if I spelled it right). I've had 6 surgeries to remove nasal poylops in my life. They can be painful, and it does make your face hurt. Also for the past 4 years I've had joint problems and a rehumatiligist( sorry I can't spell) said I had a rare form of rheumatism. You might want to get checked for something like this.

 

[johannaleigh]

Have you been checked for sinus poylops( I don't know if I spelled it right). I've had 6 surgeries to remove nasal poylops in my life. They can be painful, and it does make your face hurt. Also for the past 4 years I've had joint problems and a rehumatiligist( sorry I can't spell) said I had a rare form of rheumatism. You might want to get checked for something like this.

 

[johannaleigh]

Have you been checked for sinus poylops( I don't know if I spelled it right). I've had 6 surgeries to remove nasal poylops in my life. They can be painful, and it does make your face hurt. Also for the past 4 years I've had joint problems and a rehumatiligist( sorry I can't spell) said I had a rare form of rheumatism. You might want to get checked for something like this.

 

[johannaleigh]

Have you been checked for sinus poylops( I don't know if I spelled it right). I've had 6 surgeries to remove nasal poylops in my life. They can be painful, and it does make your face hurt. Also for the past 4 years I've had joint problems and a rehumatiligist( sorry I can't spell) said I had a rare form of rheumatism. You might want to get checked for something like this.

 

[johannaleigh]

Have you been checked for sinus poylops( I don't know if I spelled it right). I've had 6 surgeries to remove nasal poylops in my life. They can be painful, and it does make your face hurt. Also for the past 4 years I've had joint problems and a rehumatiligist( sorry I can't spell) said I had a rare form of rheumatism. You might want to get checked for something like this.