Pain Issues Pre-Transplant

[TemptressOfTheSea]

So here's my situation, which I'm sure many of you have been or are currently in.

As my CF has progressed, so has my pain. When I say pain, I mean really intense body aches, not only in my joints but in my long bones like my ulna/radius and tibia/fibia. The types of aches you'd experience prior to a full blown case of the flu. I've tested negative for RA and everything else.

I tried narcotic pain medication for a while, which definatley helped, but my tolerance was building and my lung function was suffering as a result. As a blanket policy, my lung transplant hospital says "no narcotics" prior to transplant and that I need to see a "pain specialist" and explore other options.

This goes up my ass sideways because I have tried almost everything under the sun. NSAIDS, steroids, acupuncture, massage, increase in exercise, physical therapy, the list is endless.

So am I missing something? Some days the pain is so bad I can barely get out of bed and am in tears intermittently throughout the day.

Can anyone offer any suggestions or share similar experiences about their pain issues and and remedies you've found? 'Cause either way you slice it, we are all dying, whether we're waiting for new lungs or not. I thought the whole concept of "end of life care" was to keep you comfortable.

Apologies for the ranting and raving, this is just such a huge issue for so many of us.

 

[TemptressOfTheSea]

So here's my situation, which I'm sure many of you have been or are currently in.

As my CF has progressed, so has my pain. When I say pain, I mean really intense body aches, not only in my joints but in my long bones like my ulna/radius and tibia/fibia. The types of aches you'd experience prior to a full blown case of the flu. I've tested negative for RA and everything else.

I tried narcotic pain medication for a while, which definatley helped, but my tolerance was building and my lung function was suffering as a result. As a blanket policy, my lung transplant hospital says "no narcotics" prior to transplant and that I need to see a "pain specialist" and explore other options.

This goes up my ass sideways because I have tried almost everything under the sun. NSAIDS, steroids, acupuncture, massage, increase in exercise, physical therapy, the list is endless.

So am I missing something? Some days the pain is so bad I can barely get out of bed and am in tears intermittently throughout the day.

Can anyone offer any suggestions or share similar experiences about their pain issues and and remedies you've found? 'Cause either way you slice it, we are all dying, whether we're waiting for new lungs or not. I thought the whole concept of "end of life care" was to keep you comfortable.

Apologies for the ranting and raving, this is just such a huge issue for so many of us.

 

[TemptressOfTheSea]

So here's my situation, which I'm sure many of you have been or are currently in.
<br />
<br />As my CF has progressed, so has my pain. When I say pain, I mean really intense body aches, not only in my joints but in my long bones like my ulna/radius and tibia/fibia. The types of aches you'd experience prior to a full blown case of the flu. I've tested negative for RA and everything else.
<br />
<br />I tried narcotic pain medication for a while, which definatley helped, but my tolerance was building and my lung function was suffering as a result. As a blanket policy, my lung transplant hospital says "no narcotics" prior to transplant and that I need to see a "pain specialist" and explore other options.
<br />
<br />This goes up my ass sideways because I have tried almost everything under the sun. NSAIDS, steroids, acupuncture, massage, increase in exercise, physical therapy, the list is endless.
<br />
<br />So am I missing something? Some days the pain is so bad I can barely get out of bed and am in tears intermittently throughout the day.
<br />
<br />Can anyone offer any suggestions or share similar experiences about their pain issues and and remedies you've found? 'Cause either way you slice it, we are all dying, whether we're waiting for new lungs or not. I thought the whole concept of "end of life care" was to keep you comfortable.
<br />
<br />Apologies for the ranting and raving, this is just such a huge issue for so many of us.

 

[coltsfan715]

I had pain and discomfort pre transplant but never went the route of rx pain meds - I wanted to stay off them if possible for several reasons. For me I tried the book energy medicine and did some of those exercises which did help - but it kind of coincides with accupressure and things similar to massage. For me those things worked well. I also did a small bit of yoga which helped tremendously and still does when I have issues to this day. Yoga can be semi tiring if you get fatigued easy, but if you can stand to just do one position for a short while and then take a break and try another position that may be something worth trying.

Unfortunately to say I had problems to some degree regardless of what I tried. Though I felt miserable I ultimately got used to the pain and it didn't seem as bad over time. I know that sounds like a sucky solution, but just being honest. My center didn't have a no narcotics rule but they didn't like prescribing them, to top it off the patients I know that have used narcotics pre transplant end up with major addiction issues post transplant and that can make your recovery painstaking and problem filled.

Either way I really do hope that you are able to find a solution. Maybe you could talk to you transplant doctor and see if he could write you a script for physical therapy accompanied with massage therapy to treat muscular discomfort and pain related to end stage cystic fibrosis. I know it sounds like a mouth full but I had my docs give me orders like that twice pre transplant and I got physical therapy accompanied with massage and it was covered by insurance and it did help relieve some of my pain at least temporarily.

Lindsey

 

[coltsfan715]

I had pain and discomfort pre transplant but never went the route of rx pain meds - I wanted to stay off them if possible for several reasons. For me I tried the book energy medicine and did some of those exercises which did help - but it kind of coincides with accupressure and things similar to massage. For me those things worked well. I also did a small bit of yoga which helped tremendously and still does when I have issues to this day. Yoga can be semi tiring if you get fatigued easy, but if you can stand to just do one position for a short while and then take a break and try another position that may be something worth trying.

Unfortunately to say I had problems to some degree regardless of what I tried. Though I felt miserable I ultimately got used to the pain and it didn't seem as bad over time. I know that sounds like a sucky solution, but just being honest. My center didn't have a no narcotics rule but they didn't like prescribing them, to top it off the patients I know that have used narcotics pre transplant end up with major addiction issues post transplant and that can make your recovery painstaking and problem filled.

Either way I really do hope that you are able to find a solution. Maybe you could talk to you transplant doctor and see if he could write you a script for physical therapy accompanied with massage therapy to treat muscular discomfort and pain related to end stage cystic fibrosis. I know it sounds like a mouth full but I had my docs give me orders like that twice pre transplant and I got physical therapy accompanied with massage and it was covered by insurance and it did help relieve some of my pain at least temporarily.

Lindsey

 

[coltsfan715]

I had pain and discomfort pre transplant but never went the route of rx pain meds - I wanted to stay off them if possible for several reasons. For me I tried the book energy medicine and did some of those exercises which did help - but it kind of coincides with accupressure and things similar to massage. For me those things worked well. I also did a small bit of yoga which helped tremendously and still does when I have issues to this day. Yoga can be semi tiring if you get fatigued easy, but if you can stand to just do one position for a short while and then take a break and try another position that may be something worth trying.
<br />
<br />Unfortunately to say I had problems to some degree regardless of what I tried. Though I felt miserable I ultimately got used to the pain and it didn't seem as bad over time. I know that sounds like a sucky solution, but just being honest. My center didn't have a no narcotics rule but they didn't like prescribing them, to top it off the patients I know that have used narcotics pre transplant end up with major addiction issues post transplant and that can make your recovery painstaking and problem filled.
<br />
<br />Either way I really do hope that you are able to find a solution. Maybe you could talk to you transplant doctor and see if he could write you a script for physical therapy accompanied with massage therapy to treat muscular discomfort and pain related to end stage cystic fibrosis. I know it sounds like a mouth full but I had my docs give me orders like that twice pre transplant and I got physical therapy accompanied with massage and it was covered by insurance and it did help relieve some of my pain at least temporarily.
<br />
<br />Lindsey

 

[colinmaydahl]

I have turned to baked pot goods. They don't take the pain away but help me get my minde off it. They don't supres Your breathing, or stop up your pooper. I can have some everyday for a week and go to none if I don't need them. No withdraws, and no watching the clock till you can get more. I used to do that if I was locked up.

I'm in Califorina so it is easy to get pot suckers/brownies/butter or just about anything else that You can put pot into.

Colin

 

[colinmaydahl]

I have turned to baked pot goods. They don't take the pain away but help me get my minde off it. They don't supres Your breathing, or stop up your pooper. I can have some everyday for a week and go to none if I don't need them. No withdraws, and no watching the clock till you can get more. I used to do that if I was locked up.

I'm in Califorina so it is easy to get pot suckers/brownies/butter or just about anything else that You can put pot into.

Colin

 

[colinmaydahl]

I have turned to baked pot goods. They don't take the pain away but help me get my minde off it. They don't supres Your breathing, or stop up your pooper. I can have some everyday for a week and go to none if I don't need them. No withdraws, and no watching the clock till you can get more. I used to do that if I was locked up.
<br />
<br />I'm in Califorina so it is easy to get pot suckers/brownies/butter or just about anything else that You can put pot into.
<br />
<br />Colin

 

[TemptressOfTheSea]

Lindsay...I agree with you 100% regarding the activity/staying strong prior to transplant. I haven't actually given yoga a try, mostly just due to exhaustion and some of those positions squeeze the crap out of your chest and abdominal cavities. I will certainly look into it.


Lucky me, I live in a state that permits marijuana for medical use. In the past, it's helped tremendously for appetite stimulation. It was always eaten, never smoked, of course. I honestly HATE the taste/smell of the stuff, and nowadays it just conks me out.

I'm trying to not sound like a whiny downer or as a glass-half-empty person, but loosing faith in those medical professionals that are supposed to be compassionate and to help me alleviate my pain.

 

[TemptressOfTheSea]

Lindsay...I agree with you 100% regarding the activity/staying strong prior to transplant. I haven't actually given yoga a try, mostly just due to exhaustion and some of those positions squeeze the crap out of your chest and abdominal cavities. I will certainly look into it.


Lucky me, I live in a state that permits marijuana for medical use. In the past, it's helped tremendously for appetite stimulation. It was always eaten, never smoked, of course. I honestly HATE the taste/smell of the stuff, and nowadays it just conks me out.

I'm trying to not sound like a whiny downer or as a glass-half-empty person, but loosing faith in those medical professionals that are supposed to be compassionate and to help me alleviate my pain.

 

[TemptressOfTheSea]

Lindsay...I agree with you 100% regarding the activity/staying strong prior to transplant. I haven't actually given yoga a try, mostly just due to exhaustion and some of those positions squeeze the crap out of your chest and abdominal cavities. I will certainly look into it.
<br />
<br />
<br />Lucky me, I live in a state that permits marijuana for medical use. In the past, it's helped tremendously for appetite stimulation. It was always eaten, never smoked, of course. I honestly HATE the taste/smell of the stuff, and nowadays it just conks me out.
<br />
<br />I'm trying to not sound like a whiny downer or as a glass-half-empty person, but loosing faith in those medical professionals that are supposed to be compassionate and to help me alleviate my pain.

 

[JustDucky]

Oh boy, I nearly started a thread regarding this very thing not that long ago and wondered how many people have pain issues, I know I am not alone as far as this issue goes. It sucks that anyone has to deal with pain as well as breathing problems. It has gotten so bad, that sleep is now affected. I am on Rx meds, I am not a candidate for tx, so hell, if I need relief, I will go that route and I have. I actually had to go up on meds because it has been nearly unbearable at times...you describe the pain well. I too have tested negative for RA, but my joints are very tender. I also have another condition that will intensify my pain called Ehlers danlos III, just touching them at times is too much...even blankets on them can be excruciating. My chest also hurts, like a dull ache all of the time. My doc seems to believe that it is due to inflammation of sorts as I am always fighting some bug or another chronically. My body has had enough and it shows. I am tired, physically and mentally.
My doc also knows that if I am crying uncle regarding pain, that it is time to go up on the meds. I literally have been on the same dose for years until now. The Fentanyl patch was increased to 75 mcg/hr and Percocet strength has been adjusted as well for breakthrough pain. I take motrin on a regular basis as it helps the inflammation. I also find that heating pads work well as far as taking some of the edge off, I think it relaxes me more than anything. Showers too are comforting. I also prop my body up with several pillows in bed, padding my major joints so that I don't wake up so stiff that I can't move.
It sucks that your center won't prescribe pain meds, people should not have to suffer. There are non narcotics out there...there is Ultram, not sure what your center's position is regarding that med. It works like an opiate but isn't one. It is pretty powerful. If you have muscle spasms, a muscle relaxer will help such as Baclofen. It isn't a narcotic, but is powerful and does well by me whenever the pain is spasm-related.

I hope you find a solution, medicine is so backwards sometimes.....
Hugs, Jenn

 

[JustDucky]

Oh boy, I nearly started a thread regarding this very thing not that long ago and wondered how many people have pain issues, I know I am not alone as far as this issue goes. It sucks that anyone has to deal with pain as well as breathing problems. It has gotten so bad, that sleep is now affected. I am on Rx meds, I am not a candidate for tx, so hell, if I need relief, I will go that route and I have. I actually had to go up on meds because it has been nearly unbearable at times...you describe the pain well. I too have tested negative for RA, but my joints are very tender. I also have another condition that will intensify my pain called Ehlers danlos III, just touching them at times is too much...even blankets on them can be excruciating. My chest also hurts, like a dull ache all of the time. My doc seems to believe that it is due to inflammation of sorts as I am always fighting some bug or another chronically. My body has had enough and it shows. I am tired, physically and mentally.
My doc also knows that if I am crying uncle regarding pain, that it is time to go up on the meds. I literally have been on the same dose for years until now. The Fentanyl patch was increased to 75 mcg/hr and Percocet strength has been adjusted as well for breakthrough pain. I take motrin on a regular basis as it helps the inflammation. I also find that heating pads work well as far as taking some of the edge off, I think it relaxes me more than anything. Showers too are comforting. I also prop my body up with several pillows in bed, padding my major joints so that I don't wake up so stiff that I can't move.
It sucks that your center won't prescribe pain meds, people should not have to suffer. There are non narcotics out there...there is Ultram, not sure what your center's position is regarding that med. It works like an opiate but isn't one. It is pretty powerful. If you have muscle spasms, a muscle relaxer will help such as Baclofen. It isn't a narcotic, but is powerful and does well by me whenever the pain is spasm-related.

I hope you find a solution, medicine is so backwards sometimes.....
Hugs, Jenn

 

[JustDucky]

Oh boy, I nearly started a thread regarding this very thing not that long ago and wondered how many people have pain issues, I know I am not alone as far as this issue goes. It sucks that anyone has to deal with pain as well as breathing problems. It has gotten so bad, that sleep is now affected. I am on Rx meds, I am not a candidate for tx, so hell, if I need relief, I will go that route and I have. I actually had to go up on meds because it has been nearly unbearable at times...you describe the pain well. I too have tested negative for RA, but my joints are very tender. I also have another condition that will intensify my pain called Ehlers danlos III, just touching them at times is too much...even blankets on them can be excruciating. My chest also hurts, like a dull ache all of the time. My doc seems to believe that it is due to inflammation of sorts as I am always fighting some bug or another chronically. My body has had enough and it shows. I am tired, physically and mentally.
<br />My doc also knows that if I am crying uncle regarding pain, that it is time to go up on the meds. I literally have been on the same dose for years until now. The Fentanyl patch was increased to 75 mcg/hr and Percocet strength has been adjusted as well for breakthrough pain. I take motrin on a regular basis as it helps the inflammation. I also find that heating pads work well as far as taking some of the edge off, I think it relaxes me more than anything. Showers too are comforting. I also prop my body up with several pillows in bed, padding my major joints so that I don't wake up so stiff that I can't move.
<br />It sucks that your center won't prescribe pain meds, people should not have to suffer. There are non narcotics out there...there is Ultram, not sure what your center's position is regarding that med. It works like an opiate but isn't one. It is pretty powerful. If you have muscle spasms, a muscle relaxer will help such as Baclofen. It isn't a narcotic, but is powerful and does well by me whenever the pain is spasm-related.
<br />
<br />I hope you find a solution, medicine is so backwards sometimes.....
<br />Hugs, Jenn

 

[TemptressOfTheSea]

Jenn, you brought tears to my eyes. Some days I have thought "forget tranplant, I don't want it, I just want to be out of pain." I also tried the Fentanyl patch 25 then 50 mcg/hr with Vicoprofen for breakthrough. The Fentanyl completely wrecked my short term memory and honestly I didn't feel like it was doing much analgesia-wise.

My friend recently suggested a medication called Neurontonin (spelling?) I did some reading and of course it talks all day about peripheral neuropathy, which is not what I'm experiencing, but it's non-narcotic, so I'm going to ask either my CF doc or PCP about it.

Keep those ideas coming people! Even if you just need to vent about your pain issues. I know my pain is real, regardless of how often people say it's in my head, or that I'm "ultra sensitive." All of our pain is real and we shouldn't have to suffer as we typically do with a disease like CF.

Alright, I'm backing down off my soapbox for now. Happy Independence Day everyone!

 

[TemptressOfTheSea]

Jenn, you brought tears to my eyes. Some days I have thought "forget tranplant, I don't want it, I just want to be out of pain." I also tried the Fentanyl patch 25 then 50 mcg/hr with Vicoprofen for breakthrough. The Fentanyl completely wrecked my short term memory and honestly I didn't feel like it was doing much analgesia-wise.

My friend recently suggested a medication called Neurontonin (spelling?) I did some reading and of course it talks all day about peripheral neuropathy, which is not what I'm experiencing, but it's non-narcotic, so I'm going to ask either my CF doc or PCP about it.

Keep those ideas coming people! Even if you just need to vent about your pain issues. I know my pain is real, regardless of how often people say it's in my head, or that I'm "ultra sensitive." All of our pain is real and we shouldn't have to suffer as we typically do with a disease like CF.

Alright, I'm backing down off my soapbox for now. Happy Independence Day everyone!

 

[TemptressOfTheSea]

Jenn, you brought tears to my eyes. Some days I have thought "forget tranplant, I don't want it, I just want to be out of pain." I also tried the Fentanyl patch 25 then 50 mcg/hr with Vicoprofen for breakthrough. The Fentanyl completely wrecked my short term memory and honestly I didn't feel like it was doing much analgesia-wise.
<br />
<br />My friend recently suggested a medication called Neurontonin (spelling?) I did some reading and of course it talks all day about peripheral neuropathy, which is not what I'm experiencing, but it's non-narcotic, so I'm going to ask either my CF doc or PCP about it.
<br />
<br />Keep those ideas coming people! Even if you just need to vent about your pain issues. I know my pain is real, regardless of how often people say it's in my head, or that I'm "ultra sensitive." All of our pain is real and we shouldn't have to suffer as we typically do with a disease like CF.
<br />
<br />Alright, I'm backing down off my soapbox for now. Happy Independence Day everyone!

 

[juliepie]

yeah, haley, it's gabapentin (neurontin) and it's used for like fibromyalgia, nerve, and other kinds of neuropathic pain. it's not too bad, i'm not as comfortable as i am on oxy but if i get a dose of klonopin in the morning (to relax my muscles) and take the gabapentin three times a day, it's somewhat bearable. and boston shouldn't have a problem with it. There's a TON of leeway about dosing, too- I started on 200 mg tid and can go up to like 1000 or something ridiculous. talk to your psych about getting something like valium or klonopin for the am/pm (i take 1.5 mg at night and .5 in the morning) because getting my muscles to be a little looser during the day helps with the air hunger. love you tons xoxo let me know if you need anything, i'll be at my dads all week starting tuesday!

 

[juliepie]

yeah, haley, it's gabapentin (neurontin) and it's used for like fibromyalgia, nerve, and other kinds of neuropathic pain. it's not too bad, i'm not as comfortable as i am on oxy but if i get a dose of klonopin in the morning (to relax my muscles) and take the gabapentin three times a day, it's somewhat bearable. and boston shouldn't have a problem with it. There's a TON of leeway about dosing, too- I started on 200 mg tid and can go up to like 1000 or something ridiculous. talk to your psych about getting something like valium or klonopin for the am/pm (i take 1.5 mg at night and .5 in the morning) because getting my muscles to be a little looser during the day helps with the air hunger. love you tons xoxo let me know if you need anything, i'll be at my dads all week starting tuesday!