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.
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Pain Question
- Thread starter mmmtat
- Start date
Just curious but have you or your doctors ever considered checking if it might be something like Fibromyalgia? I know it's not CF related but it does cause widespread pain like you described. I personally don't know very much about it but it might be something to look into if seeing a rheumatologist doesn't help.
Just curious but have you or your doctors ever considered checking if it might be something like Fibromyalgia? I know it's not CF related but it does cause widespread pain like you described. I personally don't know very much about it but it might be something to look into if seeing a rheumatologist doesn't help.
Just curious but have you or your doctors ever considered checking if it might be something like Fibromyalgia? I know it's not CF related but it does cause widespread pain like you described. I personally don't know very much about it but it might be something to look into if seeing a rheumatologist doesn't help.
I've experienced similar issues, some I know is an arthritis response, but the higher pain levels.. I don't see it being arthritis. And it took me nearly 3 years to find somebody that would listen hay I hurt, tried a few things even, but so far nothing has made a big change for me. Best of luck with your search and I hope you get somebody to listen.
Keith
Keith
I've experienced similar issues, some I know is an arthritis response, but the higher pain levels.. I don't see it being arthritis. And it took me nearly 3 years to find somebody that would listen hay I hurt, tried a few things even, but so far nothing has made a big change for me. Best of luck with your search and I hope you get somebody to listen.
Keith
Keith
I've experienced similar issues, some I know is an arthritis response, but the higher pain levels.. I don't see it being arthritis. And it took me nearly 3 years to find somebody that would listen hay I hurt, tried a few things even, but so far nothing has made a big change for me. Best of luck with your search and I hope you get somebody to listen.
Keith
Keith
lexymarie04
New member
<P>Hi Maggie,</P>
<P>I have the same problems I have had pain problems now for about 4 years, constant pain almost every day something is bothering me legs, arms, back, torso, also with the numbness in my arms , I recently had my chest port ct'd with dye to make sure the numbness wasnt from it. But also my CF doc hasn't tried to figure out the pain problem I recently was tested for Arthiritis and now I am being sent to Rheumologist. I take strong pain meds every day to try to make it better but never goes away.</P>
<P>I have the same problems I have had pain problems now for about 4 years, constant pain almost every day something is bothering me legs, arms, back, torso, also with the numbness in my arms , I recently had my chest port ct'd with dye to make sure the numbness wasnt from it. But also my CF doc hasn't tried to figure out the pain problem I recently was tested for Arthiritis and now I am being sent to Rheumologist. I take strong pain meds every day to try to make it better but never goes away.</P>
lexymarie04
New member
<P>Hi Maggie,</P>
<P>I have the same problems I have had pain problems now for about 4 years, constant pain almost every day something is bothering me legs, arms, back, torso, also with the numbness in my arms , I recently had my chest port ct'd with dye to make sure the numbness wasnt from it. But also my CF doc hasn't tried to figure out the pain problem I recently was tested for Arthiritis and now I am being sent to Rheumologist. I take strong pain meds every day to try to make it better but never goes away.</P>
<P>I have the same problems I have had pain problems now for about 4 years, constant pain almost every day something is bothering me legs, arms, back, torso, also with the numbness in my arms , I recently had my chest port ct'd with dye to make sure the numbness wasnt from it. But also my CF doc hasn't tried to figure out the pain problem I recently was tested for Arthiritis and now I am being sent to Rheumologist. I take strong pain meds every day to try to make it better but never goes away.</P>
lexymarie04
New member
<P>Hi Maggie,</P>
<P>I have the same problems I have had pain problems now for about 4 years, constant pain almost every day something is bothering me legs, arms, back, torso, also with the numbness in my arms , I recently had my chest port ct'd with dye to make sure the numbness wasnt from it. But also my CF doc hasn't tried to figure out the pain problem I recently was tested for Arthiritis and now I am being sent to Rheumologist. I take strong pain meds every day to try to make it better but never goes away.</P>
<P>I have the same problems I have had pain problems now for about 4 years, constant pain almost every day something is bothering me legs, arms, back, torso, also with the numbness in my arms , I recently had my chest port ct'd with dye to make sure the numbness wasnt from it. But also my CF doc hasn't tried to figure out the pain problem I recently was tested for Arthiritis and now I am being sent to Rheumologist. I take strong pain meds every day to try to make it better but never goes away.</P>
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
<br />I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
<br />I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
<br />I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
<br />I am sort of the opinion that even if it's not CF related, it's still CF related <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mmmtat</b></i>
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!</end quote></div>
<div><br></div><div>I don't really suggest living alone with CF. Have a friend live on your couch or something, but try to have someone else around for that just incase factor, because some scary and random ***** can happen to us sometimes.</div><div><br></div><div>I'd never wanna live alone after that time I had my major hemoptysis at age 21 (so much blood.. lol), and ***** like that can just happen to us. </div><div><br></div><div>So yeah.. Just sayin.. :/</div><div><br></div><div><br></div>
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!</end quote></div>
<div><br></div><div>I don't really suggest living alone with CF. Have a friend live on your couch or something, but try to have someone else around for that just incase factor, because some scary and random ***** can happen to us sometimes.</div><div><br></div><div>I'd never wanna live alone after that time I had my major hemoptysis at age 21 (so much blood.. lol), and ***** like that can just happen to us. </div><div><br></div><div>So yeah.. Just sayin.. :/</div><div><br></div><div><br></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mmmtat</b></i>
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!</end quote>
<br>I don't really suggest living alone with CF. Have a friend live on your couch or something, but try to have someone else around for that just incase factor, because some scary and random ***** can happen to us sometimes.<br>I'd never wanna live alone after that time I had my majorhemoptysis at age 21 (so much blood.. lol), and ***** like that can just happen to us.<br>So yeah.. Just sayin.. :/<br><br>
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!</end quote>
<br>I don't really suggest living alone with CF. Have a friend live on your couch or something, but try to have someone else around for that just incase factor, because some scary and random ***** can happen to us sometimes.<br>I'd never wanna live alone after that time I had my majorhemoptysis at age 21 (so much blood.. lol), and ***** like that can just happen to us.<br>So yeah.. Just sayin.. :/<br><br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mmmtat</b></i>
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!</end quote>
<br>I don't really suggest living alone with CF. Have a friend live on your couch or something, but try to have someone else around for that just incase factor, because some scary and random ***** can happen to us sometimes.<br>I'd never wanna live alone after that time I had my majorhemoptysis at age 21 (so much blood.. lol), and ***** like that can just happen to us.<br>So yeah.. Just sayin.. :/<br><br>
Thanks for all the input! My CF doc has vaguely mentioned it possibly being arthritis, or fibromyalgia. I am starting to feel like I am just being pawned off to the next doc, but I am going to try and get the rheumotology appointment set up soon.
I am sort of the opinion that even if it's not CF related, it's still CF related <img src="">
I've been dealing with the pain for at least two years now, and I always mention it to every doctor I see, but I have never really pushed the issue. With facing living alone next year, I'd like to try and get some sort of solution, or at least coping mechanism in place before my husband leaves. Thanks again for all the advice, I'll keep you all posted if I find anything out!</end quote>
<br>I don't really suggest living alone with CF. Have a friend live on your couch or something, but try to have someone else around for that just incase factor, because some scary and random ***** can happen to us sometimes.<br>I'd never wanna live alone after that time I had my majorhemoptysis at age 21 (so much blood.. lol), and ***** like that can just happen to us.<br>So yeah.. Just sayin.. :/<br><br>