IT's been a while!

CHERIE4HARTS · Mar 25, 2008

Hi everyone- It's been a few months since I have posted anything. HOWEVER, I have a question out there for some of you adults?!
My son Jacob is now 24, and he has been telling any of his DR's that will listen to him, about the constant ache in his legs, arms, back, you name it. He can hardly get out of bed at times. He says it is like his joints are popping? Even when he is getting sick, and coughing etc , it is not as bad as when he is aching like an old man! Yesterday he told the clinic again that he is hurting so bad, he can't stand it and they just don't ever seem to know what to tell him. Does anyone else ever experience this? If so, what are you doing about it, and what is it?

He has an unusually high pain tolerance, so this is not normal for him. He lives in Las Vegas, where we and his sister are also, but goes to the CF clinic in Denver. He has been happy with this clinic so far, but just like the previous clinic, they just kind of look at him funny and shake their heads. He could not go to work today, and so the clinic called in some steroi<img src="i/expressions/face-icon-small-confused.gif" border="0">ds for him-

Just wanted to know if anyone else out there has gone thru this?

Thanks
Cherie (aka "Jake's Mom")

CHERIE4HARTS · Mar 25, 2008

Hi everyone- It's been a few months since I have posted anything. HOWEVER, I have a question out there for some of you adults?!
My son Jacob is now 24, and he has been telling any of his DR's that will listen to him, about the constant ache in his legs, arms, back, you name it. He can hardly get out of bed at times. He says it is like his joints are popping? Even when he is getting sick, and coughing etc , it is not as bad as when he is aching like an old man! Yesterday he told the clinic again that he is hurting so bad, he can't stand it and they just don't ever seem to know what to tell him. Does anyone else ever experience this? If so, what are you doing about it, and what is it?

He has an unusually high pain tolerance, so this is not normal for him. He lives in Las Vegas, where we and his sister are also, but goes to the CF clinic in Denver. He has been happy with this clinic so far, but just like the previous clinic, they just kind of look at him funny and shake their heads. He could not go to work today, and so the clinic called in some steroi<img src="i/expressions/face-icon-small-confused.gif" border="0">ds for him-

Just wanted to know if anyone else out there has gone thru this?

Thanks
Cherie (aka "Jake's Mom")

CHERIE4HARTS · Mar 25, 2008

Hi everyone- It's been a few months since I have posted anything. HOWEVER, I have a question out there for some of you adults?!
My son Jacob is now 24, and he has been telling any of his DR's that will listen to him, about the constant ache in his legs, arms, back, you name it. He can hardly get out of bed at times. He says it is like his joints are popping? Even when he is getting sick, and coughing etc , it is not as bad as when he is aching like an old man! Yesterday he told the clinic again that he is hurting so bad, he can't stand it and they just don't ever seem to know what to tell him. Does anyone else ever experience this? If so, what are you doing about it, and what is it?

He has an unusually high pain tolerance, so this is not normal for him. He lives in Las Vegas, where we and his sister are also, but goes to the CF clinic in Denver. He has been happy with this clinic so far, but just like the previous clinic, they just kind of look at him funny and shake their heads. He could not go to work today, and so the clinic called in some steroi<img src="i/expressions/face-icon-small-confused.gif" border="0">ds for him-

Just wanted to know if anyone else out there has gone thru this?

Thanks
Cherie (aka "Jake's Mom")

CHERIE4HARTS · Mar 25, 2008

Hi everyone- It's been a few months since I have posted anything. HOWEVER, I have a question out there for some of you adults?!
My son Jacob is now 24, and he has been telling any of his DR's that will listen to him, about the constant ache in his legs, arms, back, you name it. He can hardly get out of bed at times. He says it is like his joints are popping? Even when he is getting sick, and coughing etc , it is not as bad as when he is aching like an old man! Yesterday he told the clinic again that he is hurting so bad, he can't stand it and they just don't ever seem to know what to tell him. Does anyone else ever experience this? If so, what are you doing about it, and what is it?

He has an unusually high pain tolerance, so this is not normal for him. He lives in Las Vegas, where we and his sister are also, but goes to the CF clinic in Denver. He has been happy with this clinic so far, but just like the previous clinic, they just kind of look at him funny and shake their heads. He could not go to work today, and so the clinic called in some steroi<img src="i/expressions/face-icon-small-confused.gif" border="0">ds for him-

Just wanted to know if anyone else out there has gone thru this?

Thanks
Cherie (aka "Jake's Mom")

CHERIE4HARTS · Mar 25, 2008

Hi everyone- It's been a few months since I have posted anything. HOWEVER, I have a question out there for some of you adults?!
 My son Jacob is now 24, and he has been telling any of his DR's that will listen to him, about the constant ache in his legs, arms, back, you name it. He can hardly get out of bed at times. He says it is like his joints are popping? Even when he is getting sick, and coughing etc , it is not as bad as when he is aching like an old man! Yesterday he told the clinic again that he is hurting so bad, he can't stand it and they just don't ever seem to know what to tell him. Does anyone else ever experience this? If so, what are you doing about it, and what is it?
 
 He has an unusually high pain tolerance, so this is not normal for him. He lives in Las Vegas, where we and his sister are also, but goes to the CF clinic in Denver. He has been happy with this clinic so far, but just like the previous clinic, they just kind of look at him funny and shake their heads. He could not go to work today, and so the clinic called in some steroi<img src="i/expressions/face-icon-small-confused.gif" border="0">ds for him-
 
 Just wanted to know if anyone else out there has gone thru this?
 
 Thanks
 Cherie (aka "Jake's Mom")

thefrogprincess · Mar 25, 2008

CF related arthritis....

Its very common in adult CFers. Some get it worse than others, his sounds bad. I take anti-inflamatories like Aleve and that usually does the job for me. Sometimes though I have to take something stronger like vicodine. I also take magnesium suppliments which seems to help.

If I get cold the aches are worse so I wear lots of layers outside and have been known to sit around with a heating pad on my tummy to keep my core temp up. I also have a reuseable gel pack I keep at work, I can microwave it and just hold it.

I would recommend that he see a rhumatologist, especially since his CF docs seem to be clueless.

thefrogprincess · Mar 25, 2008

CF related arthritis....

Its very common in adult CFers. Some get it worse than others, his sounds bad. I take anti-inflamatories like Aleve and that usually does the job for me. Sometimes though I have to take something stronger like vicodine. I also take magnesium suppliments which seems to help.

If I get cold the aches are worse so I wear lots of layers outside and have been known to sit around with a heating pad on my tummy to keep my core temp up. I also have a reuseable gel pack I keep at work, I can microwave it and just hold it.

I would recommend that he see a rhumatologist, especially since his CF docs seem to be clueless.

thefrogprincess · Mar 25, 2008

CF related arthritis....

Its very common in adult CFers. Some get it worse than others, his sounds bad. I take anti-inflamatories like Aleve and that usually does the job for me. Sometimes though I have to take something stronger like vicodine. I also take magnesium suppliments which seems to help.

If I get cold the aches are worse so I wear lots of layers outside and have been known to sit around with a heating pad on my tummy to keep my core temp up. I also have a reuseable gel pack I keep at work, I can microwave it and just hold it.

I would recommend that he see a rhumatologist, especially since his CF docs seem to be clueless.

thefrogprincess · Mar 25, 2008

CF related arthritis....

Its very common in adult CFers. Some get it worse than others, his sounds bad. I take anti-inflamatories like Aleve and that usually does the job for me. Sometimes though I have to take something stronger like vicodine. I also take magnesium suppliments which seems to help.

If I get cold the aches are worse so I wear lots of layers outside and have been known to sit around with a heating pad on my tummy to keep my core temp up. I also have a reuseable gel pack I keep at work, I can microwave it and just hold it.

I would recommend that he see a rhumatologist, especially since his CF docs seem to be clueless.

thefrogprincess · Mar 25, 2008

CF related arthritis....
 
 Its very common in adult CFers. Some get it worse than others, his sounds bad. I take anti-inflamatories like Aleve and that usually does the job for me. Sometimes though I have to take something stronger like vicodine. I also take magnesium suppliments which seems to help.
 
 If I get cold the aches are worse so I wear lots of layers outside and have been known to sit around with a heating pad on my tummy to keep my core temp up. I also have a reuseable gel pack I keep at work, I can microwave it and just hold it.
 
 I would recommend that he see a rhumatologist, especially since his CF docs seem to be clueless.

AnD · Mar 26, 2008

I have read that some people get feeling that way when they are desatting at night. I also had those type of aches (though not to the point of not being able to function) that improved when...I got a noise machine to drown out my husband's snoring...aheh. I decided to try it after I read that fibromyalgia may be related to a problem with sleep.

It is also possible that he has fibromyalgia- men get it too (one of our local meteorologists has it)- you could google it and see if anything fits <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I have also seen that a magnesium deficency can cause body aches- just google it too and you should find some info. I also started magnesium, and it has helped my body aches.

I hope you get to the bottom of it really soon. Ask for a referal to a specialist if you aren't getting any help from clinic, if nothing else <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

AnD · Mar 26, 2008

I have read that some people get feeling that way when they are desatting at night. I also had those type of aches (though not to the point of not being able to function) that improved when...I got a noise machine to drown out my husband's snoring...aheh. I decided to try it after I read that fibromyalgia may be related to a problem with sleep.

It is also possible that he has fibromyalgia- men get it too (one of our local meteorologists has it)- you could google it and see if anything fits <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I have also seen that a magnesium deficency can cause body aches- just google it too and you should find some info. I also started magnesium, and it has helped my body aches.

I hope you get to the bottom of it really soon. Ask for a referal to a specialist if you aren't getting any help from clinic, if nothing else <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

AnD · Mar 26, 2008

I have read that some people get feeling that way when they are desatting at night. I also had those type of aches (though not to the point of not being able to function) that improved when...I got a noise machine to drown out my husband's snoring...aheh. I decided to try it after I read that fibromyalgia may be related to a problem with sleep.

It is also possible that he has fibromyalgia- men get it too (one of our local meteorologists has it)- you could google it and see if anything fits <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I have also seen that a magnesium deficency can cause body aches- just google it too and you should find some info. I also started magnesium, and it has helped my body aches.

I hope you get to the bottom of it really soon. Ask for a referal to a specialist if you aren't getting any help from clinic, if nothing else <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

AnD · Mar 26, 2008

I have read that some people get feeling that way when they are desatting at night. I also had those type of aches (though not to the point of not being able to function) that improved when...I got a noise machine to drown out my husband's snoring...aheh. I decided to try it after I read that fibromyalgia may be related to a problem with sleep.

It is also possible that he has fibromyalgia- men get it too (one of our local meteorologists has it)- you could google it and see if anything fits <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

I have also seen that a magnesium deficency can cause body aches- just google it too and you should find some info. I also started magnesium, and it has helped my body aches.

I hope you get to the bottom of it really soon. Ask for a referal to a specialist if you aren't getting any help from clinic, if nothing else <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

AnD · Mar 26, 2008

I have read that some people get feeling that way when they are desatting at night. I also had those type of aches (though not to the point of not being able to function) that improved when...I got a noise machine to drown out my husband's snoring...aheh. I decided to try it after I read that fibromyalgia may be related to a problem with sleep.
 
 It is also possible that he has fibromyalgia- men get it too (one of our local meteorologists has it)- you could google it and see if anything fits <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
 I have also seen that a magnesium deficency can cause body aches- just google it too and you should find some info. I also started magnesium, and it has helped my body aches.
 
 I hope you get to the bottom of it really soon. Ask for a referal to a specialist if you aren't getting any help from clinic, if nothing else <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

CHERIE4HARTS · Mar 26, 2008

Hi Jessi,
Thanks for the info! I talked to him last night after I read your message, and I think he will start the Aleve, and then maybe talk to clinic for refferal to Rhumatologist?!
He has Cfrd also, so don't know if that will interfere? Will just keep asking until we can find some relief for him.
I really try to keep encouraging him to use this site and talk to other adults,but he seems reluctant to do it. I don't want to push him, but hopefully he will start soon.
Again, thanks for your help- I love this site.
Cherie <img src="i/expressions/face-icon-small-smile.gif" border="0">

CHERIE4HARTS · Mar 26, 2008

Hi Jessi,
Thanks for the info! I talked to him last night after I read your message, and I think he will start the Aleve, and then maybe talk to clinic for refferal to Rhumatologist?!
He has Cfrd also, so don't know if that will interfere? Will just keep asking until we can find some relief for him.
I really try to keep encouraging him to use this site and talk to other adults,but he seems reluctant to do it. I don't want to push him, but hopefully he will start soon.
Again, thanks for your help- I love this site.
Cherie <img src="i/expressions/face-icon-small-smile.gif" border="0">

CHERIE4HARTS · Mar 26, 2008

Hi Jessi,
Thanks for the info! I talked to him last night after I read your message, and I think he will start the Aleve, and then maybe talk to clinic for refferal to Rhumatologist?!
He has Cfrd also, so don't know if that will interfere? Will just keep asking until we can find some relief for him.
I really try to keep encouraging him to use this site and talk to other adults,but he seems reluctant to do it. I don't want to push him, but hopefully he will start soon.
Again, thanks for your help- I love this site.
Cherie <img src="i/expressions/face-icon-small-smile.gif" border="0">

CHERIE4HARTS · Mar 26, 2008

Hi Jessi,
Thanks for the info! I talked to him last night after I read your message, and I think he will start the Aleve, and then maybe talk to clinic for refferal to Rhumatologist?!
He has Cfrd also, so don't know if that will interfere? Will just keep asking until we can find some relief for him.
I really try to keep encouraging him to use this site and talk to other adults,but he seems reluctant to do it. I don't want to push him, but hopefully he will start soon.
Again, thanks for your help- I love this site.
Cherie <img src="i/expressions/face-icon-small-smile.gif" border="0">

CHERIE4HARTS · Mar 26, 2008

Hi Jessi,
 Thanks for the info! I talked to him last night after I read your message, and I think he will start the Aleve, and then maybe talk to clinic for refferal to Rhumatologist?!
 He has Cfrd also, so don't know if that will interfere? Will just keep asking until we can find some relief for him.
 I really try to keep encouraging him to use this site and talk to other adults,but he seems reluctant to do it. I don't want to push him, but hopefully he will start soon.
 Again, thanks for your help- I love this site.
 Cherie <img src="i/expressions/face-icon-small-smile.gif" border="0">

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