Pain Question

[mmmtat]

<P>Hi everyone, </P>
<P>I have been a lurker on this board for years. Finally joined. I am 24, married, no kids, one dog. My FEV1 is currently in 90-100%s. I just got diagnosed in September with CFRD and am trying to figure that out (I have lows all the time, but rarely go high). </P>
<P>My current most urgent problem is that I have pain all the time. The most severe and particular pain is in my legs, torso and arms. The severity changes over weeks, but when it is at it's worst I cannot stand up to even go to the bathroom or get a drink of water. It is both sharp and achey...I also get numbness in my arms quite frequently. I have told my primary care doc and my CF doc for the last two years, but no action has been taken. I am very active, running, lifting weights, hiking, paragliding...so sometimes I think they don't take my pain seriously. It's becoming more and more of an issue in my life, and my relationship with my husband. Today my CF doc recommened seeing a rheumatologist. I am wondering if anyone sees a rheumatologoist, or if anyone has similar pain?</P>
<P> </P>

 

[mmmtat]

<P>Hi everyone, </P>
<P>I have been a lurker on this board for years. Finally joined. I am 24, married, no kids, one dog. My FEV1 is currently in 90-100%s. I just got diagnosed in September with CFRD and am trying to figure that out (I have lows all the time, but rarely go high). </P>
<P>My current most urgent problem is that I have pain all the time. The most severe and particular pain is in my legs, torso and arms. The severity changes over weeks, but when it is at it's worst I cannot stand up to even go to the bathroom or get a drink of water. It is both sharp and achey...I also get numbness in my arms quite frequently. I have told my primary care doc and my CF doc for the last two years, but no action has been taken. I am very active, running, lifting weights, hiking, paragliding...so sometimes I think they don't take my pain seriously. It's becoming more and more of an issue in my life, and my relationship with my husband. Today my CF doc recommened seeing a rheumatologist. I am wondering if anyone sees a rheumatologoist, or if anyone has similar pain?</P>
<P></P>

 

[mmmtat]

<P><BR>Hi everyone, </P>
<P>I have been a lurker on this board for years. Finally joined. I am 24, married, no kids, one dog. My FEV1 is currently in 90-100%s. I just got diagnosed in September with CFRD and am trying to figure that out (I have lows all the time, but rarely go high). </P>
<P>My current most urgent problem is that I have pain all the time. The most severe and particular pain is in my legs, torso and arms. The severity changes over weeks, but when it is at it's worst I cannot stand up to even go to the bathroom or get a drink of water. It is both sharp and achey...I also get numbness in my arms quite frequently. I have told my primary care doc and my CF doc for the last two years, but no action has been taken. I am very active, running, lifting weights, hiking, paragliding...so sometimes I think they don't take my pain seriously. It's becoming more and more of an issue in my life, and my relationship with my husband. Today my CF doc recommened seeing a rheumatologist. I am wondering if anyone sees a rheumatologoist, or if anyone has similar pain?</P>
<P></P>

 

[Treble]

My pains in particular have always been from my sinusitis issues, or pulled muscles from coughing, or fever aches, or chest pains from my lungs being gay, etc etc. but I've never had just random pains like the ones you're describing.

When exactly did these pains start? Are they related to the CFRD? Because they sorta sound like they're coming from something screwing with your nervous system.

 

[Treble]

My pains in particular have always been from my sinusitis issues, or pulled muscles from coughing, or fever aches, or chest pains from my lungs being gay, etc etc. but I've never had just random pains like the ones you're describing.

When exactly did these pains start? Are they related to the CFRD? Because they sorta sound like they're coming from something screwing with your nervous system.

 

[Treble]

My pains in particular have always been from my sinusitis issues, or pulled muscles from coughing, or fever aches, or chest pains from my lungs being gay, etc etc. but I've never had just random pains like the ones you're describing.
<br />
<br />When exactly did these pains start? Are they related to the CFRD? Because they sorta sound like they're coming from something screwing with your nervous system.

 

[Zan]

My 14 year old daughter, who has CF, has similar complaints.  She has very good lung function, normal growth, but often complains of soreness after exercise.  Even if it's something as simple as throwing a frisbee, if she hasn't done it in a while she will be very sore the next day.  Is there arthritis in your family?  I don't have CF but do have severe psoriatic arthritis problems.  There are good new drugs for it--Arthrotec, which is a pill, NSAID, that doesn't hurt your stomach as much as some; and injected drugs like Enbrel and Humira (which I take).  We've had the same response from her CF docs, i.e., that this isn't connected to CF.  But I suspect it might be.  Good luck. 

 

[Zan]

My 14 year old daughter, who has CF, has similar complaints. She has very good lung function, normal growth, but often complains of soreness after exercise. Even if it's something as simple as throwing a frisbee, if she hasn't done it in a while she will be very sore the next day. Is there arthritis in your family? I don't have CF but do have severe psoriatic arthritis problems. There are good new drugs for it--Arthrotec, which is a pill, NSAID, that doesn't hurt your stomach as much as some; and injected drugs like Enbrel and Humira (which I take). We've had the same response from her CF docs, i.e., that this isn't connected to CF. But I suspect it might be. Good luck.

 

[Zan]

My 14 year old daughter, who has CF, has similar complaints. She has very good lung function, normal growth, but often complains of soreness after exercise. Even if it's something as simple as throwing a frisbee, if she hasn't done it in a while she will be very sore the next day. Is there arthritis in your family? I don't have CF but do have severe psoriatic arthritis problems. There are good new drugs for it--Arthrotec, which is a pill, NSAID, that doesn't hurt your stomach as much as some; and injected drugs like Enbrel and Humira (which I take). We've had the same response from her CF docs, i.e., that this isn't connected to CF. But I suspect it might be. Good luck. <BR>

 

[kgfrompa]

<br>I have pain in my lungs from scar tissue since I have had 19 chest tubes when i get mucus in stuck in my lungs I can experence so much pain i cant function. I also have weakness in my legs but not so bad I am so sorry that you are in pain CF is so unpredictable and we do learn from each and every one. I hope you get answers and out of pain

 

[kgfrompa]

<br>I have pain in my lungs from scar tissue since I have had 19 chest tubes when i get mucus in stuck in my lungs I can experence so much pain i cant function. I also have weakness in my legs but not so bad I am so sorry that you are in pain CF is so unpredictable and we do learn from each and every one. I hope you get answers and out of pain

 

[kgfrompa]

<br>I have pain in my lungs from scar tissue since I have had 19 chest tubes when i get mucus in stuck in my lungs I can experence so much pain i cant function. I also have weakness in my legs but not so bad I am so sorry that you are in pain CF is so unpredictable and we do learn from each and every one. I hope you get answers and out of pain

 

[beleache]

Hi Maggie & welcome to the site !<div><br></div><div>  I myself have not experienced the type of pain you are experiencing , except leg pain from fosomax..  I do know there are others that have similar pain that you have described & see the rhumo for it..  You can try doing a search for it here & you may get some info..   I hope the dr gets it under control.  Living with constant pain isn't any fun <img src="i/expressions/face-icon-small-sad.gif" border="0"> </div><div><br></div><div> Some of us get together in chat Wednesday nights 8 PM EST if you care to join us we would love to have you..   Take care  <img src="i/expressions/face-icon-small-smile.gif" border="0">  joni</div>

 

[beleache]

Hi Maggie & welcome to the site !<br>I myself have not experienced the type of pain you are experiencing , except leg pain from fosomax.. I do know there are others that have similar pain that you have described & see the rhumo for it.. You can try doing a search for it here & you may get some info.. I hope the dr gets it under control. Living with constant pain isn't any fun <img src="i/expressions/face-icon-small-sad.gif" border="0"><br>Some of us get together in chat Wednesday nights 8 PM EST if you care to join us we would love to have you.. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[beleache]

Hi Maggie & welcome to the site !<br>I myself have not experienced the type of pain you are experiencing , except leg pain from fosomax.. I do know there are others that have similar pain that you have described & see the rhumo for it.. You can try doing a search for it here & you may get some info.. I hope the dr gets it under control. Living with constant pain isn't any fun <img src="i/expressions/face-icon-small-sad.gif" border="0"><br>Some of us get together in chat Wednesday nights 8 PM EST if you care to join us we would love to have you.. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[sabrina77]

I get those pains also. I am 25 and very active. I was diagnosed with CF when I was 4 years old. My doctors thought it was cystic fibrosis related arthiritis. I don't get the pains all the time maybe 2-3 times a year. When I do they are very painful and keep me from doing anything for about 4-7 days. I get them in my neck, legs, hips, wrists. When I get a "flare up" it is usually when I am about to get an infection or I have one. I usually take ibuprofen and am prescribed prednisone.

 

[sabrina77]

I get those pains also. I am 25 and very active. I was diagnosed with CF when I was 4 years old. My doctors thought it was cystic fibrosis related arthiritis. I don't get the pains all the time maybe 2-3 times a year. When I do they are very painful and keep me from doing anything for about 4-7 days. I get them in my neck, legs, hips, wrists. When I get a "flare up" it is usually when I am about to get an infection or I have one. I usually take ibuprofen and am prescribed prednisone.

 

[sabrina77]

I get those pains also. I am 25 and very active. I was diagnosed with CF when I was 4 years old. My doctors thought it was cystic fibrosis related arthiritis. I don't get the pains all the time maybe 2-3 times a year. When I do they are very painful and keep me from doing anything for about 4-7 days. I get them in my neck, legs, hips, wrists. When I get a "flare up" it is usually when I am about to get an infection or I have one. I usually take ibuprofen and am prescribed prednisone.

 

[sabrina77]

I get those pains also. I am 25 and very active. I was diagnosed with CF when I was 4 years old. My doctors thought it was cystic fibrosis related arthiritis. I don't get the pains all the time maybe 2-3 times a year. When I do they are very painful and keep me from doing anything for about 4-7 days. I get them in my neck, legs, hips, wrists. When I get a "flare up" it is usually when I am about to get an infection or I have one. I usually take ibuprofen and am prescribed prednisone.

 

[sabrina77]

I get those pains also. I am 25 and very active. I was diagnosed with CF when I was 4 years old. My doctors thought it was cystic fibrosis related arthiritis. I don't get the pains all the time maybe 2-3 times a year. When I do they are very painful and keep me from doing anything for about 4-7 days. I get them in my neck, legs, hips, wrists. When I get a "flare up" it is usually when I am about to get an infection or I have one. I usually take ibuprofen and am prescribed prednisone.