CF and chronic pain

E

entropy

Guest
Hello,

I'm new to the forum. I'm 20 and have CF. Had a sister with CF though she passed away in 08 at 21. We both have mild CF, though she neglected to take care of herself and slowly faded away.

Anyway, I was wondering if anybody else has issues with chronic pain? I have back and joint pain often, and because of that it's often very bothersome for me to even go from a sitting position to a standing position and I have to will myself to stand up straight. I have a tendency to hunch over because when I stand up my lower back hurts. This is made all the worse by the fact that recently I was in the hospital for pneumonia for a while and ended up getting a pulmonary embolism a few days after I was released which caused me to pass out. I broke my back in THREE places and fractured my nose during this fall.

I don't want it to come across the wrong way... I can walk now and, for the most part, I'm healthy. Even so, my back pain is much worse than it was before. I have scoliosis as well, and that isn't helping any.

I can't tolerate physical therapists for very long because I feel as though I'm being patronized. I have the ability to stand up straight and pull my shoulders back, it just causes pain when I do it, so I don't WANT to. I would rather walk hunched over and not be in as much pain than walk like a model while grinding my teeth.

After my hospital stay I was prescribed opiates, and that did take care of the pain. I understand opiates are addictive and can sometimes cause respiratory depression. But right now I'm facing MENTAL depression from always being in pain and having so little energy as is as a result of CF. It's a slippery slope. Most doctors who don 't specialize in CF are very wary of taking on patients with CF, and CF doctors are wary of prescribing adequate pain medication because of the respiratory depression-related side effects. So, am I going to be condemned to a life of chronic pain? I have some mild liver complications related to CF so I avoid NSAIDs and the like completely. When I do take them, my liver screams at me.

I've also found that when taking opiate medications I have so much more energy than before, and my mood is improved because I'm not constantly having to manage this pain. It's a catch 22, I see that, but I would like to live my life with some sense of normality, aside from all of the respiratory aspects of CF. The back pain just exacerbates everything, strips me of motivation, and puts me in a bad mood, and I'm becoming more and more jaded as this crap continues. I'm only 20 but I feel like I'm 65.

If anyone has an experience similar to this, or any doctors can give me some advice on how to talk to my doctor about this without looking like a drug seeking fiend, I would really be thankful.

Thanks in advance,

entropy
 
E

entropy

Guest
Hello,

I'm new to the forum. I'm 20 and have CF. Had a sister with CF though she passed away in 08 at 21. We both have mild CF, though she neglected to take care of herself and slowly faded away.

Anyway, I was wondering if anybody else has issues with chronic pain? I have back and joint pain often, and because of that it's often very bothersome for me to even go from a sitting position to a standing position and I have to will myself to stand up straight. I have a tendency to hunch over because when I stand up my lower back hurts. This is made all the worse by the fact that recently I was in the hospital for pneumonia for a while and ended up getting a pulmonary embolism a few days after I was released which caused me to pass out. I broke my back in THREE places and fractured my nose during this fall.

I don't want it to come across the wrong way... I can walk now and, for the most part, I'm healthy. Even so, my back pain is much worse than it was before. I have scoliosis as well, and that isn't helping any.

I can't tolerate physical therapists for very long because I feel as though I'm being patronized. I have the ability to stand up straight and pull my shoulders back, it just causes pain when I do it, so I don't WANT to. I would rather walk hunched over and not be in as much pain than walk like a model while grinding my teeth.

After my hospital stay I was prescribed opiates, and that did take care of the pain. I understand opiates are addictive and can sometimes cause respiratory depression. But right now I'm facing MENTAL depression from always being in pain and having so little energy as is as a result of CF. It's a slippery slope. Most doctors who don 't specialize in CF are very wary of taking on patients with CF, and CF doctors are wary of prescribing adequate pain medication because of the respiratory depression-related side effects. So, am I going to be condemned to a life of chronic pain? I have some mild liver complications related to CF so I avoid NSAIDs and the like completely. When I do take them, my liver screams at me.

I've also found that when taking opiate medications I have so much more energy than before, and my mood is improved because I'm not constantly having to manage this pain. It's a catch 22, I see that, but I would like to live my life with some sense of normality, aside from all of the respiratory aspects of CF. The back pain just exacerbates everything, strips me of motivation, and puts me in a bad mood, and I'm becoming more and more jaded as this crap continues. I'm only 20 but I feel like I'm 65.

If anyone has an experience similar to this, or any doctors can give me some advice on how to talk to my doctor about this without looking like a drug seeking fiend, I would really be thankful.

Thanks in advance,

entropy
 
E

entropy

Guest
Hello,
<br />
<br />I'm new to the forum. I'm 20 and have CF. Had a sister with CF though she passed away in 08 at 21. We both have mild CF, though she neglected to take care of herself and slowly faded away.
<br />
<br />Anyway, I was wondering if anybody else has issues with chronic pain? I have back and joint pain often, and because of that it's often very bothersome for me to even go from a sitting position to a standing position and I have to will myself to stand up straight. I have a tendency to hunch over because when I stand up my lower back hurts. This is made all the worse by the fact that recently I was in the hospital for pneumonia for a while and ended up getting a pulmonary embolism a few days after I was released which caused me to pass out. I broke my back in THREE places and fractured my nose during this fall.
<br />
<br />I don't want it to come across the wrong way... I can walk now and, for the most part, I'm healthy. Even so, my back pain is much worse than it was before. I have scoliosis as well, and that isn't helping any.
<br />
<br />I can't tolerate physical therapists for very long because I feel as though I'm being patronized. I have the ability to stand up straight and pull my shoulders back, it just causes pain when I do it, so I don't WANT to. I would rather walk hunched over and not be in as much pain than walk like a model while grinding my teeth.
<br />
<br />After my hospital stay I was prescribed opiates, and that did take care of the pain. I understand opiates are addictive and can sometimes cause respiratory depression. But right now I'm facing MENTAL depression from always being in pain and having so little energy as is as a result of CF. It's a slippery slope. Most doctors who don 't specialize in CF are very wary of taking on patients with CF, and CF doctors are wary of prescribing adequate pain medication because of the respiratory depression-related side effects. So, am I going to be condemned to a life of chronic pain? I have some mild liver complications related to CF so I avoid NSAIDs and the like completely. When I do take them, my liver screams at me.
<br />
<br />I've also found that when taking opiate medications I have so much more energy than before, and my mood is improved because I'm not constantly having to manage this pain. It's a catch 22, I see that, but I would like to live my life with some sense of normality, aside from all of the respiratory aspects of CF. The back pain just exacerbates everything, strips me of motivation, and puts me in a bad mood, and I'm becoming more and more jaded as this crap continues. I'm only 20 but I feel like I'm 65.
<br />
<br />If anyone has an experience similar to this, or any doctors can give me some advice on how to talk to my doctor about this without looking like a drug seeking fiend, I would really be thankful.
<br />
<br />Thanks in advance,
<br />
<br />entropy
 
J

JORDYSMOM

New member
My son Jordan is 20. He just told me the other day that he feels like he's 60. He had Sherman's kyphosis, and underwent an 8 hour spine surgery to correct it when he was 15. It was during his pre-surgery screening that he was diagnosed with CF. We were sent to a pulmo to get the okay for the surgery due to his "asthma". That pulmo tested him for CF at the first appt. I always knew there was something more than asthma & allergies, but nobody seemed to listen.

Jordan still has back pain, but it's nothing compared to what it was before his surgery. He breathes better now too, because his lungs aren't being crowded so much by his body hunching over. I won't lie, the surgery was major. He was in a body brace for 6 months afterward. It was another 6 months after that before he was fully recovered.

You may want to see a spine surgeon about this. I'd seek out one who only operates on the spine. Not just a run of the mill Ortho will do. If you only do one thing, you do it better, in my opinion. We were fortunate to have a doctor who pioneered the procedure he used on Jordan. He even had Jordan sign his permission to publish him in medical journals.

Chronic pain just makes you mad. I don't know if surgery is an option for you, but if it is, it may aleviate some of your pain. You can't help but be depressed when you hurt constantly. I'd simply go to your doctor, and say "Look, I hurt all of the time. I want to talk about options to ease it, because it's causing me serious problems." Ask for a referral for a good spine surgeon. The really good ones are very self assured, and won't be scared away by your CF.

Stacey
 
J

JORDYSMOM

New member
My son Jordan is 20. He just told me the other day that he feels like he's 60. He had Sherman's kyphosis, and underwent an 8 hour spine surgery to correct it when he was 15. It was during his pre-surgery screening that he was diagnosed with CF. We were sent to a pulmo to get the okay for the surgery due to his "asthma". That pulmo tested him for CF at the first appt. I always knew there was something more than asthma & allergies, but nobody seemed to listen.

Jordan still has back pain, but it's nothing compared to what it was before his surgery. He breathes better now too, because his lungs aren't being crowded so much by his body hunching over. I won't lie, the surgery was major. He was in a body brace for 6 months afterward. It was another 6 months after that before he was fully recovered.

You may want to see a spine surgeon about this. I'd seek out one who only operates on the spine. Not just a run of the mill Ortho will do. If you only do one thing, you do it better, in my opinion. We were fortunate to have a doctor who pioneered the procedure he used on Jordan. He even had Jordan sign his permission to publish him in medical journals.

Chronic pain just makes you mad. I don't know if surgery is an option for you, but if it is, it may aleviate some of your pain. You can't help but be depressed when you hurt constantly. I'd simply go to your doctor, and say "Look, I hurt all of the time. I want to talk about options to ease it, because it's causing me serious problems." Ask for a referral for a good spine surgeon. The really good ones are very self assured, and won't be scared away by your CF.

Stacey
 
J

JORDYSMOM

New member
My son Jordan is 20. He just told me the other day that he feels like he's 60. He had Sherman's kyphosis, and underwent an 8 hour spine surgery to correct it when he was 15. It was during his pre-surgery screening that he was diagnosed with CF. We were sent to a pulmo to get the okay for the surgery due to his "asthma". That pulmo tested him for CF at the first appt. I always knew there was something more than asthma & allergies, but nobody seemed to listen.
<br />
<br />Jordan still has back pain, but it's nothing compared to what it was before his surgery. He breathes better now too, because his lungs aren't being crowded so much by his body hunching over. I won't lie, the surgery was major. He was in a body brace for 6 months afterward. It was another 6 months after that before he was fully recovered.
<br />
<br />You may want to see a spine surgeon about this. I'd seek out one who only operates on the spine. Not just a run of the mill Ortho will do. If you only do one thing, you do it better, in my opinion. We were fortunate to have a doctor who pioneered the procedure he used on Jordan. He even had Jordan sign his permission to publish him in medical journals.
<br />
<br />Chronic pain just makes you mad. I don't know if surgery is an option for you, but if it is, it may aleviate some of your pain. You can't help but be depressed when you hurt constantly. I'd simply go to your doctor, and say "Look, I hurt all of the time. I want to talk about options to ease it, because it's causing me serious problems." Ask for a referral for a good spine surgeon. The really good ones are very self assured, and won't be scared away by your CF.
<br />
<br />Stacey
 
P

peter

New member
Hi, welcome to this site. I happen to be a PT and it sounds like you need a good PT experience. PT should not be painful and in fact there are techniques to help you reduce pain through appropriate exercise and maybe as well using a TENS type of stmulator. If you wish to to PM (private message) me I could ask you some questions and see if you are near a clinic I could recommend.The 3rd icon from the left in the upper right hand corner is for PM'ing. Btw, some members of this site will say there is no such thing as mild cf. Do you have osteoporosis? Anyway glad you thought to come here. PM me!
Peter
 
P

peter

New member
Hi, welcome to this site. I happen to be a PT and it sounds like you need a good PT experience. PT should not be painful and in fact there are techniques to help you reduce pain through appropriate exercise and maybe as well using a TENS type of stmulator. If you wish to to PM (private message) me I could ask you some questions and see if you are near a clinic I could recommend.The 3rd icon from the left in the upper right hand corner is for PM'ing. Btw, some members of this site will say there is no such thing as mild cf. Do you have osteoporosis? Anyway glad you thought to come here. PM me!
Peter
 
P

peter

New member
Hi, welcome to this site. I happen to be a PT and it sounds like you need a good PT experience. PT should not be painful and in fact there are techniques to help you reduce pain through appropriate exercise and maybe as well using a TENS type of stmulator. If you wish to to PM (private message) me I could ask you some questions and see if you are near a clinic I could recommend.The 3rd icon from the left in the upper right hand corner is for PM'ing. Btw, some members of this site will say there is no such thing as mild cf. Do you have osteoporosis? Anyway glad you thought to come here. PM me!
<br />Peter
 
E

entropy

Guest
Thanks for your sincere reply JORDYSMOM.

I forgot to mention that I have compressed discs, L4 and L5. I did inquire about surgical procedures to fix my pain but was told that it can't be done at least for 6 months because I have to take blood thinners, and that basically rules out any surgical intervention. I discussed this with my mom as well, who is a nurse, and she told me that very rarely has she met one who underwent back surgery and came out of it in a better position than they were before. It seems that back pain runs in my family; my father and all of my uncles have back pain.

So, in the long term surgery is definitely something I will look into. I'm unemployed right now because of I've had so many problems lately, and the days go by soooo slow. 6 months will seem like a year, and a perceived year of nonstop pain is something that makes me just want to lay in bed and die just to be pain free. I'm not suicidial or anything like that, don't get me wrong... it's just very hard for me to see the bright side of things when I'm constantly bombarded with bad news. I was always very healthy when I was younger. In the past 2 years things have got a lot worse. I should be having the time of my life right now, shouldn't I?
 
E

entropy

Guest
Thanks for your sincere reply JORDYSMOM.

I forgot to mention that I have compressed discs, L4 and L5. I did inquire about surgical procedures to fix my pain but was told that it can't be done at least for 6 months because I have to take blood thinners, and that basically rules out any surgical intervention. I discussed this with my mom as well, who is a nurse, and she told me that very rarely has she met one who underwent back surgery and came out of it in a better position than they were before. It seems that back pain runs in my family; my father and all of my uncles have back pain.

So, in the long term surgery is definitely something I will look into. I'm unemployed right now because of I've had so many problems lately, and the days go by soooo slow. 6 months will seem like a year, and a perceived year of nonstop pain is something that makes me just want to lay in bed and die just to be pain free. I'm not suicidial or anything like that, don't get me wrong... it's just very hard for me to see the bright side of things when I'm constantly bombarded with bad news. I was always very healthy when I was younger. In the past 2 years things have got a lot worse. I should be having the time of my life right now, shouldn't I?
 
E

entropy

Guest
Thanks for your sincere reply JORDYSMOM.
<br />
<br />I forgot to mention that I have compressed discs, L4 and L5. I did inquire about surgical procedures to fix my pain but was told that it can't be done at least for 6 months because I have to take blood thinners, and that basically rules out any surgical intervention. I discussed this with my mom as well, who is a nurse, and she told me that very rarely has she met one who underwent back surgery and came out of it in a better position than they were before. It seems that back pain runs in my family; my father and all of my uncles have back pain.
<br />
<br />So, in the long term surgery is definitely something I will look into. I'm unemployed right now because of I've had so many problems lately, and the days go by soooo slow. 6 months will seem like a year, and a perceived year of nonstop pain is something that makes me just want to lay in bed and die just to be pain free. I'm not suicidial or anything like that, don't get me wrong... it's just very hard for me to see the bright side of things when I'm constantly bombarded with bad news. I was always very healthy when I was younger. In the past 2 years things have got a lot worse. I should be having the time of my life right now, shouldn't I?
 
E

entropy

Guest
Hi Peter,

My doctors have always told me my CF was a mild form... I've never personally met anyone else with CF except my sister so I don't have much to judge by.

I have never had a good PT experience yet but maybe that was because it was always done in the hospital. The PTs I've had didn't seem to have very much empathy when I was in serious pain. It was more of a "suck it up and do it" kind of thing. Call me what you will, but I don't like to be in pain if I don't have to be. I have a low tolerance to serious pain :)
 
E

entropy

Guest
Hi Peter,

My doctors have always told me my CF was a mild form... I've never personally met anyone else with CF except my sister so I don't have much to judge by.

I have never had a good PT experience yet but maybe that was because it was always done in the hospital. The PTs I've had didn't seem to have very much empathy when I was in serious pain. It was more of a "suck it up and do it" kind of thing. Call me what you will, but I don't like to be in pain if I don't have to be. I have a low tolerance to serious pain :)
 
E

entropy

Guest
Hi Peter,
<br />
<br />My doctors have always told me my CF was a mild form... I've never personally met anyone else with CF except my sister so I don't have much to judge by.
<br />
<br />I have never had a good PT experience yet but maybe that was because it was always done in the hospital. The PTs I've had didn't seem to have very much empathy when I was in serious pain. It was more of a "suck it up and do it" kind of thing. Call me what you will, but I don't like to be in pain if I don't have to be. I have a low tolerance to serious pain :)
 
M

missT

Member
Hi, you sound so mature and it breaks my heart that you are so young and in this much pain. You also really sound educated and that is a good thing when deciding what course to take. It doesnt hurt either that your mom is a nurse. Ok, so I liked Staceys advice. I would def find a doc that will prescibe pain meds...there is always one who will. Be warned....you are covering the pain and this will lead to a whole mess of problems....dependence being one of them. I have always taken pain meds and iv's only when absolutely necessary and even then they make me sick. I also got hooked once in the hospital and the withdrawl was wicked. Also, they only work for awhile. Best of luck to you.
 
M

missT

Member
Hi, you sound so mature and it breaks my heart that you are so young and in this much pain. You also really sound educated and that is a good thing when deciding what course to take. It doesnt hurt either that your mom is a nurse. Ok, so I liked Staceys advice. I would def find a doc that will prescibe pain meds...there is always one who will. Be warned....you are covering the pain and this will lead to a whole mess of problems....dependence being one of them. I have always taken pain meds and iv's only when absolutely necessary and even then they make me sick. I also got hooked once in the hospital and the withdrawl was wicked. Also, they only work for awhile. Best of luck to you.
 
M

missT

Member
Hi, you sound so mature and it breaks my heart that you are so young and in this much pain. You also really sound educated and that is a good thing when deciding what course to take. It doesnt hurt either that your mom is a nurse. Ok, so I liked Staceys advice. I would def find a doc that will prescibe pain meds...there is always one who will. Be warned....you are covering the pain and this will lead to a whole mess of problems....dependence being one of them. I have always taken pain meds and iv's only when absolutely necessary and even then they make me sick. I also got hooked once in the hospital and the withdrawl was wicked. Also, they only work for awhile. Best of luck to you.
 
You must log in or register to reply here.
Top