CF Arthritis - CF Arthropathy

M

mltoliver

New member
Hi All!

Just wanted to share some issues we've been having with all of you because I didn't know what was going on with my daughter for over a week and am now so thankful that we have some answers.

She has had some excruciating pain all over her body - she couldn't turn her neck, her fingers were hurting, her wrist was hurting, her hip was hurting, her ribs were hurting, her heel was hurting. She was limping around and we couldn't lift her up from under her arms because her ribs hurt so bad. She couldn't lay down and she was soooooooo MISERABLE! We went to the Dr. 3 x before we were lucky enough to have a rheumatologist for peds look at her and tell us that she was having CF arthropathy.

She recommended Naprosyn or if we wanted her to have a pill form - 1 Aleve tablet. We started this yesterday afternoon and I can not believe the improvement. I have my little girl back! she is still in some pain but it is no longer excruciating and she can move around. it's incredible.

Apparently it can be exacerbated during periods of infection - we are currently on some strong antibiotics and she hasn't been feeling well for awhile.

I just wanted to share this with all of you. It is something I really knew nothing about after all these years.
 
M

mltoliver

New member
Hi All!

Just wanted to share some issues we've been having with all of you because I didn't know what was going on with my daughter for over a week and am now so thankful that we have some answers.

She has had some excruciating pain all over her body - she couldn't turn her neck, her fingers were hurting, her wrist was hurting, her hip was hurting, her ribs were hurting, her heel was hurting. She was limping around and we couldn't lift her up from under her arms because her ribs hurt so bad. She couldn't lay down and she was soooooooo MISERABLE! We went to the Dr. 3 x before we were lucky enough to have a rheumatologist for peds look at her and tell us that she was having CF arthropathy.

She recommended Naprosyn or if we wanted her to have a pill form - 1 Aleve tablet. We started this yesterday afternoon and I can not believe the improvement. I have my little girl back! she is still in some pain but it is no longer excruciating and she can move around. it's incredible.

Apparently it can be exacerbated during periods of infection - we are currently on some strong antibiotics and she hasn't been feeling well for awhile.

I just wanted to share this with all of you. It is something I really knew nothing about after all these years.
 
M

mltoliver

New member
Hi All!

Just wanted to share some issues we've been having with all of you because I didn't know what was going on with my daughter for over a week and am now so thankful that we have some answers.

She has had some excruciating pain all over her body - she couldn't turn her neck, her fingers were hurting, her wrist was hurting, her hip was hurting, her ribs were hurting, her heel was hurting. She was limping around and we couldn't lift her up from under her arms because her ribs hurt so bad. She couldn't lay down and she was soooooooo MISERABLE! We went to the Dr. 3 x before we were lucky enough to have a rheumatologist for peds look at her and tell us that she was having CF arthropathy.

She recommended Naprosyn or if we wanted her to have a pill form - 1 Aleve tablet. We started this yesterday afternoon and I can not believe the improvement. I have my little girl back! she is still in some pain but it is no longer excruciating and she can move around. it's incredible.

Apparently it can be exacerbated during periods of infection - we are currently on some strong antibiotics and she hasn't been feeling well for awhile.

I just wanted to share this with all of you. It is something I really knew nothing about after all these years.
 
M

mltoliver

New member
Hi All!

Just wanted to share some issues we've been having with all of you because I didn't know what was going on with my daughter for over a week and am now so thankful that we have some answers.

She has had some excruciating pain all over her body - she couldn't turn her neck, her fingers were hurting, her wrist was hurting, her hip was hurting, her ribs were hurting, her heel was hurting. She was limping around and we couldn't lift her up from under her arms because her ribs hurt so bad. She couldn't lay down and she was soooooooo MISERABLE! We went to the Dr. 3 x before we were lucky enough to have a rheumatologist for peds look at her and tell us that she was having CF arthropathy.

She recommended Naprosyn or if we wanted her to have a pill form - 1 Aleve tablet. We started this yesterday afternoon and I can not believe the improvement. I have my little girl back! she is still in some pain but it is no longer excruciating and she can move around. it's incredible.

Apparently it can be exacerbated during periods of infection - we are currently on some strong antibiotics and she hasn't been feeling well for awhile.

I just wanted to share this with all of you. It is something I really knew nothing about after all these years.
 
M

mltoliver

New member
Hi All!
<br />
<br />Just wanted to share some issues we've been having with all of you because I didn't know what was going on with my daughter for over a week and am now so thankful that we have some answers.
<br />
<br />She has had some excruciating pain all over her body - she couldn't turn her neck, her fingers were hurting, her wrist was hurting, her hip was hurting, her ribs were hurting, her heel was hurting. She was limping around and we couldn't lift her up from under her arms because her ribs hurt so bad. She couldn't lay down and she was soooooooo MISERABLE! We went to the Dr. 3 x before we were lucky enough to have a rheumatologist for peds look at her and tell us that she was having CF arthropathy.
<br />
<br />She recommended Naprosyn or if we wanted her to have a pill form - 1 Aleve tablet. We started this yesterday afternoon and I can not believe the improvement. I have my little girl back! she is still in some pain but it is no longer excruciating and she can move around. it's incredible.
<br />
<br />Apparently it can be exacerbated during periods of infection - we are currently on some strong antibiotics and she hasn't been feeling well for awhile.
<br />
<br />I just wanted to share this with all of you. It is something I really knew nothing about after all these years.
<br />
<br />
 
I

izemmom

New member
Thanks for sharing this. My goodness, there's never an end to what we need to know, is there?

I hope your daughter is back to feeling 100% soon!!!
 
I

izemmom

New member
Thanks for sharing this. My goodness, there's never an end to what we need to know, is there?

I hope your daughter is back to feeling 100% soon!!!
 
I

izemmom

New member
Thanks for sharing this. My goodness, there's never an end to what we need to know, is there?

I hope your daughter is back to feeling 100% soon!!!
 
I

izemmom

New member
Thanks for sharing this. My goodness, there's never an end to what we need to know, is there?

I hope your daughter is back to feeling 100% soon!!!
 
I

izemmom

New member
Thanks for sharing this. My goodness, there's never an end to what we need to know, is there?
<br />
<br />I hope your daughter is back to feeling 100% soon!!!
 
K

krisgabes

New member
Can you elaborate on the Cystic Fibrosis arthropathy? Like what did your doctor say about it, etc.? I ask because I was having the same types of pain for the past few weeks and I just went to the rheumatologist who is running some blood work to make sure it isn't anything like Lupus, RA, etc. She put me on Celebrex and vitamin D so far and it has definately been working. Thanks!
 
K

krisgabes

New member
Can you elaborate on the Cystic Fibrosis arthropathy? Like what did your doctor say about it, etc.? I ask because I was having the same types of pain for the past few weeks and I just went to the rheumatologist who is running some blood work to make sure it isn't anything like Lupus, RA, etc. She put me on Celebrex and vitamin D so far and it has definately been working. Thanks!
 
K

krisgabes

New member
Can you elaborate on the Cystic Fibrosis arthropathy? Like what did your doctor say about it, etc.? I ask because I was having the same types of pain for the past few weeks and I just went to the rheumatologist who is running some blood work to make sure it isn't anything like Lupus, RA, etc. She put me on Celebrex and vitamin D so far and it has definately been working. Thanks!
 
K

krisgabes

New member
Can you elaborate on the Cystic Fibrosis arthropathy? Like what did your doctor say about it, etc.? I ask because I was having the same types of pain for the past few weeks and I just went to the rheumatologist who is running some blood work to make sure it isn't anything like Lupus, RA, etc. She put me on Celebrex and vitamin D so far and it has definately been working. Thanks!
 
K

krisgabes

New member
Can you elaborate on the Cystic Fibrosis arthropathy? Like what did your doctor say about it, etc.? I ask because I was having the same types of pain for the past few weeks and I just went to the rheumatologist who is running some blood work to make sure it isn't anything like Lupus, RA, etc. She put me on Celebrex and vitamin D so far and it has definately been working. Thanks!
 
D

Dea

New member
I have had CF arthritis since I was about age 9 (my earliest memory). The pain is so bad you cant walk or move any joint in the body without hurting. When I was younger I also would get heated red bumps that would show up on mostly my legs. I would also get a fever. When I was younger they really couldnt say what it was. I am now 36...and of course since that time they call if CF related arthritis. Mine has now led to rheumatoid because of all the flare ups. Naprosyn helped when I was younger for a while. Then I did take Celebrex for about 3 yrs during my early 20s. After that nothing but prednisone really helped me. It is definitely an inflammatory type arthritis so the steroids help. I am now on methotrexate which does help the flare ups from happening so much...but they still do. I still have to take prednisone when a flare up hits.
A hot bath will help for a little while. I feel for your daughter and hope they will find something to help with this type of arthritis! My flare ups happen so randomly without alot of warning. I have noticed, though...that when I overdo it..I get a flare up. The bad thing is that it does take time to go away. I remember when I was younger it would last for a week at a time. Now, I can usually get over it in a couple of days. Good luck to your daughter. I would be more than happy to answer any questions you might have...
 
D

Dea

New member
I have had CF arthritis since I was about age 9 (my earliest memory). The pain is so bad you cant walk or move any joint in the body without hurting. When I was younger I also would get heated red bumps that would show up on mostly my legs. I would also get a fever. When I was younger they really couldnt say what it was. I am now 36...and of course since that time they call if CF related arthritis. Mine has now led to rheumatoid because of all the flare ups. Naprosyn helped when I was younger for a while. Then I did take Celebrex for about 3 yrs during my early 20s. After that nothing but prednisone really helped me. It is definitely an inflammatory type arthritis so the steroids help. I am now on methotrexate which does help the flare ups from happening so much...but they still do. I still have to take prednisone when a flare up hits.
A hot bath will help for a little while. I feel for your daughter and hope they will find something to help with this type of arthritis! My flare ups happen so randomly without alot of warning. I have noticed, though...that when I overdo it..I get a flare up. The bad thing is that it does take time to go away. I remember when I was younger it would last for a week at a time. Now, I can usually get over it in a couple of days. Good luck to your daughter. I would be more than happy to answer any questions you might have...
 
D

Dea

New member
I have had CF arthritis since I was about age 9 (my earliest memory). The pain is so bad you cant walk or move any joint in the body without hurting. When I was younger I also would get heated red bumps that would show up on mostly my legs. I would also get a fever. When I was younger they really couldnt say what it was. I am now 36...and of course since that time they call if CF related arthritis. Mine has now led to rheumatoid because of all the flare ups. Naprosyn helped when I was younger for a while. Then I did take Celebrex for about 3 yrs during my early 20s. After that nothing but prednisone really helped me. It is definitely an inflammatory type arthritis so the steroids help. I am now on methotrexate which does help the flare ups from happening so much...but they still do. I still have to take prednisone when a flare up hits.
A hot bath will help for a little while. I feel for your daughter and hope they will find something to help with this type of arthritis! My flare ups happen so randomly without alot of warning. I have noticed, though...that when I overdo it..I get a flare up. The bad thing is that it does take time to go away. I remember when I was younger it would last for a week at a time. Now, I can usually get over it in a couple of days. Good luck to your daughter. I would be more than happy to answer any questions you might have...
 
D

Dea

New member
I have had CF arthritis since I was about age 9 (my earliest memory). The pain is so bad you cant walk or move any joint in the body without hurting. When I was younger I also would get heated red bumps that would show up on mostly my legs. I would also get a fever. When I was younger they really couldnt say what it was. I am now 36...and of course since that time they call if CF related arthritis. Mine has now led to rheumatoid because of all the flare ups. Naprosyn helped when I was younger for a while. Then I did take Celebrex for about 3 yrs during my early 20s. After that nothing but prednisone really helped me. It is definitely an inflammatory type arthritis so the steroids help. I am now on methotrexate which does help the flare ups from happening so much...but they still do. I still have to take prednisone when a flare up hits.
A hot bath will help for a little while. I feel for your daughter and hope they will find something to help with this type of arthritis! My flare ups happen so randomly without alot of warning. I have noticed, though...that when I overdo it..I get a flare up. The bad thing is that it does take time to go away. I remember when I was younger it would last for a week at a time. Now, I can usually get over it in a couple of days. Good luck to your daughter. I would be more than happy to answer any questions you might have...
 
D

Dea

New member
I have had CF arthritis since I was about age 9 (my earliest memory). The pain is so bad you cant walk or move any joint in the body without hurting. When I was younger I also would get heated red bumps that would show up on mostly my legs. I would also get a fever. When I was younger they really couldnt say what it was. I am now 36...and of course since that time they call if CF related arthritis. Mine has now led to rheumatoid because of all the flare ups. Naprosyn helped when I was younger for a while. Then I did take Celebrex for about 3 yrs during my early 20s. After that nothing but prednisone really helped me. It is definitely an inflammatory type arthritis so the steroids help. I am now on methotrexate which does help the flare ups from happening so much...but they still do. I still have to take prednisone when a flare up hits.
<br />A hot bath will help for a little while. I feel for your daughter and hope they will find something to help with this type of arthritis! My flare ups happen so randomly without alot of warning. I have noticed, though...that when I overdo it..I get a flare up. The bad thing is that it does take time to go away. I remember when I was younger it would last for a week at a time. Now, I can usually get over it in a couple of days. Good luck to your daughter. I would be more than happy to answer any questions you might have...
 
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