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!
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Pain Issues Pre-Transplant
- Thread starter TemptressOfTheSea
- Start date
TemptressOfTheSea
New member
Julie, not to air all this out on a message board, but I AM SO HAPPY you are getting out. We should meet up at the ocean mist (halfway between our houses), oxygen and all, and see if we can get some hot guys to buy us some sympathy drinks. Haha, just kidding, kind of.
Anyways, I've got the psych stuff covered, trying out Xanax, but I think I'm canning that because Ativan works better. I'm not sure who I should ask about the Neurontin...my general practitioner, CF doc, a pain specialist? I just don't want to have to wait forever to get relief.
Little side note, I asked Brigham about bipap as a way to help me out in the interim. They said GREAT IDEA, and it bumps you up on the list. So I call Dr. D, he's like "you need a sleep study first." Ummmmm, I've asked about bipap the last 3 hospitalizations, couldn't this have been explored then?
Without being too specific, I just feel like our state's CF clinic is in existence because they HAVE to be, not because they really want to help CF patients. Frustrating as heck.
Anyways, I've got the psych stuff covered, trying out Xanax, but I think I'm canning that because Ativan works better. I'm not sure who I should ask about the Neurontin...my general practitioner, CF doc, a pain specialist? I just don't want to have to wait forever to get relief.
Little side note, I asked Brigham about bipap as a way to help me out in the interim. They said GREAT IDEA, and it bumps you up on the list. So I call Dr. D, he's like "you need a sleep study first." Ummmmm, I've asked about bipap the last 3 hospitalizations, couldn't this have been explored then?
Without being too specific, I just feel like our state's CF clinic is in existence because they HAVE to be, not because they really want to help CF patients. Frustrating as heck.
TemptressOfTheSea
New member
Julie, not to air all this out on a message board, but I AM SO HAPPY you are getting out. We should meet up at the ocean mist (halfway between our houses), oxygen and all, and see if we can get some hot guys to buy us some sympathy drinks. Haha, just kidding, kind of.
Anyways, I've got the psych stuff covered, trying out Xanax, but I think I'm canning that because Ativan works better. I'm not sure who I should ask about the Neurontin...my general practitioner, CF doc, a pain specialist? I just don't want to have to wait forever to get relief.
Little side note, I asked Brigham about bipap as a way to help me out in the interim. They said GREAT IDEA, and it bumps you up on the list. So I call Dr. D, he's like "you need a sleep study first." Ummmmm, I've asked about bipap the last 3 hospitalizations, couldn't this have been explored then?
Without being too specific, I just feel like our state's CF clinic is in existence because they HAVE to be, not because they really want to help CF patients. Frustrating as heck.
Anyways, I've got the psych stuff covered, trying out Xanax, but I think I'm canning that because Ativan works better. I'm not sure who I should ask about the Neurontin...my general practitioner, CF doc, a pain specialist? I just don't want to have to wait forever to get relief.
Little side note, I asked Brigham about bipap as a way to help me out in the interim. They said GREAT IDEA, and it bumps you up on the list. So I call Dr. D, he's like "you need a sleep study first." Ummmmm, I've asked about bipap the last 3 hospitalizations, couldn't this have been explored then?
Without being too specific, I just feel like our state's CF clinic is in existence because they HAVE to be, not because they really want to help CF patients. Frustrating as heck.
TemptressOfTheSea
New member
Julie, not to air all this out on a message board, but I AM SO HAPPY you are getting out. We should meet up at the ocean mist (halfway between our houses), oxygen and all, and see if we can get some hot guys to buy us some sympathy drinks. Haha, just kidding, kind of.
<br />
<br />Anyways, I've got the psych stuff covered, trying out Xanax, but I think I'm canning that because Ativan works better. I'm not sure who I should ask about the Neurontin...my general practitioner, CF doc, a pain specialist? I just don't want to have to wait forever to get relief.
<br />
<br />Little side note, I asked Brigham about bipap as a way to help me out in the interim. They said GREAT IDEA, and it bumps you up on the list. So I call Dr. D, he's like "you need a sleep study first." Ummmmm, I've asked about bipap the last 3 hospitalizations, couldn't this have been explored then?
<br />
<br />Without being too specific, I just feel like our state's CF clinic is in existence because they HAVE to be, not because they really want to help CF patients. Frustrating as heck.
<br />
<br />Anyways, I've got the psych stuff covered, trying out Xanax, but I think I'm canning that because Ativan works better. I'm not sure who I should ask about the Neurontin...my general practitioner, CF doc, a pain specialist? I just don't want to have to wait forever to get relief.
<br />
<br />Little side note, I asked Brigham about bipap as a way to help me out in the interim. They said GREAT IDEA, and it bumps you up on the list. So I call Dr. D, he's like "you need a sleep study first." Ummmmm, I've asked about bipap the last 3 hospitalizations, couldn't this have been explored then?
<br />
<br />Without being too specific, I just feel like our state's CF clinic is in existence because they HAVE to be, not because they really want to help CF patients. Frustrating as heck.
i had bipap set up for me when i was in the hospital. the RTs did it and figured out the correct settings and then the case manager put in the order with my homecare people. it saved me the sleep study. next time you go in, see if you can work that out. it's so much easier! I would ask dr d about the gabapentin. if he was willing to rx narcotics, he shouldn't have a problem. i ended up increasing my dose to 300 mg in the morning and 200 mg in the afternoon and at night. it's bearable but i might go up a little more. O mist sounds great! i have been craving their eggs benedict with a mimosa! (as ordered by my neurologist to reduce stress haha)
i had bipap set up for me when i was in the hospital. the RTs did it and figured out the correct settings and then the case manager put in the order with my homecare people. it saved me the sleep study. next time you go in, see if you can work that out. it's so much easier! I would ask dr d about the gabapentin. if he was willing to rx narcotics, he shouldn't have a problem. i ended up increasing my dose to 300 mg in the morning and 200 mg in the afternoon and at night. it's bearable but i might go up a little more. O mist sounds great! i have been craving their eggs benedict with a mimosa! (as ordered by my neurologist to reduce stress haha)
i had bipap set up for me when i was in the hospital. the RTs did it and figured out the correct settings and then the case manager put in the order with my homecare people. it saved me the sleep study. next time you go in, see if you can work that out. it's so much easier! I would ask dr d about the gabapentin. if he was willing to rx narcotics, he shouldn't have a problem. i ended up increasing my dose to 300 mg in the morning and 200 mg in the afternoon and at night. it's bearable but i might go up a little more. O mist sounds great! i have been craving their eggs benedict with a mimosa! (as ordered by my neurologist to reduce stress haha)
B
bookworm
Guest
I'm not pre-transplant but I do have CF and a history of bone pain. I've learned that there appears to be a magnesium deficiency happening in my body when I'm in extraordinary pain. I've found that antibiotics and coffee really deplete magnesium very quickly. However, there are many other things that deplete magnesium. You may want to do a search on magnesium deficiency on the web.
Depending on my level of pain I will up my magnesium and/or take Epsom salt baths (which are another way of absorbing magnesium.) However, I've also learned over the years, that just magnesium won't cut it for me for total pain relief. For some reason, I also need to take doxycycline regularly to keep me out of this weird arthritic spiral that no-one has much of an answer for. If I take doxycycline regularly my joint pain goes way down, my fatigue decreases, my mood lifts. So, now I can take antibiotics that will deplete my magnesium (taking magnesium between doses and doxycycline with the other abx) and feel relatively good. Previously my pain was pretty horrible. I could not use my hands, get up the stairs, sleep, etc. I had been diagnosed with osteoarthritis at one point (when I had a knee operated on 15 years ago) and my ANA was elevated on one of the tests. But I've learned over the years that there is quite a bit you can do to be comfortable. (I've had to learn, because I have another problem that makes it a really bad idea to take pain relievers.)
One of the other things I do is weights. I started with a program called Strong Women Stay Young which you can search for on the net. This program was originally created for people to do in their homes to decrease bone loss and increase their mobility. The exercises are clearly shown with animations and it's a great way to get started with weights (to decrease bone pain). It's proven and based on great research by Tufts University.
Another thing that is very helpful for me is Chinese Medicine. A skilled practitioner who knows Chinese herbs - such as the martial arts hit medicines and the kidney tonics can help you get a smile back on your face. My daughter - who is a massage therapist - uses the hit medicine ointments with her elderly arthritic patients with very good results.
A few other tips:
-If you're pretty sensitive to chemicals, smells etc., you may want to investigate doxycycline. It has the most interesting side effect - it actually appears to reduce that sensitivity - and reduce arthritic symptoms. There's been some research lately about using doxycycline for CF because of its anti-inflammatory properties.
- You may notice that magnesium is very good for stopping a suddenly drippy nose and relieving chest congestion and asthma. You'll find more information about this on sites describing magnesium deficiency. There's also been a lot of studies in the past on magnesium and asthma (inhaled, etc.) You can find a lot of these articles using Google Scholar.
- There are quite a few people taking doxycycline and minocin etc. for arthritis, scleroderma and other arthritic problems. To find out more about their experiences search for "The Road Back" site.
Hope you all find the solutions that work for you.
Depending on my level of pain I will up my magnesium and/or take Epsom salt baths (which are another way of absorbing magnesium.) However, I've also learned over the years, that just magnesium won't cut it for me for total pain relief. For some reason, I also need to take doxycycline regularly to keep me out of this weird arthritic spiral that no-one has much of an answer for. If I take doxycycline regularly my joint pain goes way down, my fatigue decreases, my mood lifts. So, now I can take antibiotics that will deplete my magnesium (taking magnesium between doses and doxycycline with the other abx) and feel relatively good. Previously my pain was pretty horrible. I could not use my hands, get up the stairs, sleep, etc. I had been diagnosed with osteoarthritis at one point (when I had a knee operated on 15 years ago) and my ANA was elevated on one of the tests. But I've learned over the years that there is quite a bit you can do to be comfortable. (I've had to learn, because I have another problem that makes it a really bad idea to take pain relievers.)
One of the other things I do is weights. I started with a program called Strong Women Stay Young which you can search for on the net. This program was originally created for people to do in their homes to decrease bone loss and increase their mobility. The exercises are clearly shown with animations and it's a great way to get started with weights (to decrease bone pain). It's proven and based on great research by Tufts University.
Another thing that is very helpful for me is Chinese Medicine. A skilled practitioner who knows Chinese herbs - such as the martial arts hit medicines and the kidney tonics can help you get a smile back on your face. My daughter - who is a massage therapist - uses the hit medicine ointments with her elderly arthritic patients with very good results.
A few other tips:
-If you're pretty sensitive to chemicals, smells etc., you may want to investigate doxycycline. It has the most interesting side effect - it actually appears to reduce that sensitivity - and reduce arthritic symptoms. There's been some research lately about using doxycycline for CF because of its anti-inflammatory properties.
- You may notice that magnesium is very good for stopping a suddenly drippy nose and relieving chest congestion and asthma. You'll find more information about this on sites describing magnesium deficiency. There's also been a lot of studies in the past on magnesium and asthma (inhaled, etc.) You can find a lot of these articles using Google Scholar.
- There are quite a few people taking doxycycline and minocin etc. for arthritis, scleroderma and other arthritic problems. To find out more about their experiences search for "The Road Back" site.
Hope you all find the solutions that work for you.
B
bookworm
Guest
I'm not pre-transplant but I do have CF and a history of bone pain. I've learned that there appears to be a magnesium deficiency happening in my body when I'm in extraordinary pain. I've found that antibiotics and coffee really deplete magnesium very quickly. However, there are many other things that deplete magnesium. You may want to do a search on magnesium deficiency on the web.
Depending on my level of pain I will up my magnesium and/or take Epsom salt baths (which are another way of absorbing magnesium.) However, I've also learned over the years, that just magnesium won't cut it for me for total pain relief. For some reason, I also need to take doxycycline regularly to keep me out of this weird arthritic spiral that no-one has much of an answer for. If I take doxycycline regularly my joint pain goes way down, my fatigue decreases, my mood lifts. So, now I can take antibiotics that will deplete my magnesium (taking magnesium between doses and doxycycline with the other abx) and feel relatively good. Previously my pain was pretty horrible. I could not use my hands, get up the stairs, sleep, etc. I had been diagnosed with osteoarthritis at one point (when I had a knee operated on 15 years ago) and my ANA was elevated on one of the tests. But I've learned over the years that there is quite a bit you can do to be comfortable. (I've had to learn, because I have another problem that makes it a really bad idea to take pain relievers.)
One of the other things I do is weights. I started with a program called Strong Women Stay Young which you can search for on the net. This program was originally created for people to do in their homes to decrease bone loss and increase their mobility. The exercises are clearly shown with animations and it's a great way to get started with weights (to decrease bone pain). It's proven and based on great research by Tufts University.
Another thing that is very helpful for me is Chinese Medicine. A skilled practitioner who knows Chinese herbs - such as the martial arts hit medicines and the kidney tonics can help you get a smile back on your face. My daughter - who is a massage therapist - uses the hit medicine ointments with her elderly arthritic patients with very good results.
A few other tips:
-If you're pretty sensitive to chemicals, smells etc., you may want to investigate doxycycline. It has the most interesting side effect - it actually appears to reduce that sensitivity - and reduce arthritic symptoms. There's been some research lately about using doxycycline for CF because of its anti-inflammatory properties.
- You may notice that magnesium is very good for stopping a suddenly drippy nose and relieving chest congestion and asthma. You'll find more information about this on sites describing magnesium deficiency. There's also been a lot of studies in the past on magnesium and asthma (inhaled, etc.) You can find a lot of these articles using Google Scholar.
- There are quite a few people taking doxycycline and minocin etc. for arthritis, scleroderma and other arthritic problems. To find out more about their experiences search for "The Road Back" site.
Hope you all find the solutions that work for you.
Depending on my level of pain I will up my magnesium and/or take Epsom salt baths (which are another way of absorbing magnesium.) However, I've also learned over the years, that just magnesium won't cut it for me for total pain relief. For some reason, I also need to take doxycycline regularly to keep me out of this weird arthritic spiral that no-one has much of an answer for. If I take doxycycline regularly my joint pain goes way down, my fatigue decreases, my mood lifts. So, now I can take antibiotics that will deplete my magnesium (taking magnesium between doses and doxycycline with the other abx) and feel relatively good. Previously my pain was pretty horrible. I could not use my hands, get up the stairs, sleep, etc. I had been diagnosed with osteoarthritis at one point (when I had a knee operated on 15 years ago) and my ANA was elevated on one of the tests. But I've learned over the years that there is quite a bit you can do to be comfortable. (I've had to learn, because I have another problem that makes it a really bad idea to take pain relievers.)
One of the other things I do is weights. I started with a program called Strong Women Stay Young which you can search for on the net. This program was originally created for people to do in their homes to decrease bone loss and increase their mobility. The exercises are clearly shown with animations and it's a great way to get started with weights (to decrease bone pain). It's proven and based on great research by Tufts University.
Another thing that is very helpful for me is Chinese Medicine. A skilled practitioner who knows Chinese herbs - such as the martial arts hit medicines and the kidney tonics can help you get a smile back on your face. My daughter - who is a massage therapist - uses the hit medicine ointments with her elderly arthritic patients with very good results.
A few other tips:
-If you're pretty sensitive to chemicals, smells etc., you may want to investigate doxycycline. It has the most interesting side effect - it actually appears to reduce that sensitivity - and reduce arthritic symptoms. There's been some research lately about using doxycycline for CF because of its anti-inflammatory properties.
- You may notice that magnesium is very good for stopping a suddenly drippy nose and relieving chest congestion and asthma. You'll find more information about this on sites describing magnesium deficiency. There's also been a lot of studies in the past on magnesium and asthma (inhaled, etc.) You can find a lot of these articles using Google Scholar.
- There are quite a few people taking doxycycline and minocin etc. for arthritis, scleroderma and other arthritic problems. To find out more about their experiences search for "The Road Back" site.
Hope you all find the solutions that work for you.
B
bookworm
Guest
I'm not pre-transplant but I do have CF and a history of bone pain. I've learned that there appears to be a magnesium deficiency happening in my body when I'm in extraordinary pain. I've found that antibiotics and coffee really deplete magnesium very quickly. However, there are many other things that deplete magnesium. You may want to do a search on magnesium deficiency on the web.
<br />Depending on my level of pain I will up my magnesium and/or take Epsom salt baths (which are another way of absorbing magnesium.) However, I've also learned over the years, that just magnesium won't cut it for me for total pain relief. For some reason, I also need to take doxycycline regularly to keep me out of this weird arthritic spiral that no-one has much of an answer for. If I take doxycycline regularly my joint pain goes way down, my fatigue decreases, my mood lifts. So, now I can take antibiotics that will deplete my magnesium (taking magnesium between doses and doxycycline with the other abx) and feel relatively good. Previously my pain was pretty horrible. I could not use my hands, get up the stairs, sleep, etc. I had been diagnosed with osteoarthritis at one point (when I had a knee operated on 15 years ago) and my ANA was elevated on one of the tests. But I've learned over the years that there is quite a bit you can do to be comfortable. (I've had to learn, because I have another problem that makes it a really bad idea to take pain relievers.)
<br />One of the other things I do is weights. I started with a program called Strong Women Stay Young which you can search for on the net. This program was originally created for people to do in their homes to decrease bone loss and increase their mobility. The exercises are clearly shown with animations and it's a great way to get started with weights (to decrease bone pain). It's proven and based on great research by Tufts University.
<br />Another thing that is very helpful for me is Chinese Medicine. A skilled practitioner who knows Chinese herbs - such as the martial arts hit medicines and the kidney tonics can help you get a smile back on your face. My daughter - who is a massage therapist - uses the hit medicine ointments with her elderly arthritic patients with very good results.
<br />A few other tips:
<br />-If you're pretty sensitive to chemicals, smells etc., you may want to investigate doxycycline. It has the most interesting side effect - it actually appears to reduce that sensitivity - and reduce arthritic symptoms. There's been some research lately about using doxycycline for CF because of its anti-inflammatory properties.
<br />- You may notice that magnesium is very good for stopping a suddenly drippy nose and relieving chest congestion and asthma. You'll find more information about this on sites describing magnesium deficiency. There's also been a lot of studies in the past on magnesium and asthma (inhaled, etc.) You can find a lot of these articles using Google Scholar.
<br />- There are quite a few people taking doxycycline and minocin etc. for arthritis, scleroderma and other arthritic problems. To find out more about their experiences search for "The Road Back" site.
<br />Hope you all find the solutions that work for you.
<br />Depending on my level of pain I will up my magnesium and/or take Epsom salt baths (which are another way of absorbing magnesium.) However, I've also learned over the years, that just magnesium won't cut it for me for total pain relief. For some reason, I also need to take doxycycline regularly to keep me out of this weird arthritic spiral that no-one has much of an answer for. If I take doxycycline regularly my joint pain goes way down, my fatigue decreases, my mood lifts. So, now I can take antibiotics that will deplete my magnesium (taking magnesium between doses and doxycycline with the other abx) and feel relatively good. Previously my pain was pretty horrible. I could not use my hands, get up the stairs, sleep, etc. I had been diagnosed with osteoarthritis at one point (when I had a knee operated on 15 years ago) and my ANA was elevated on one of the tests. But I've learned over the years that there is quite a bit you can do to be comfortable. (I've had to learn, because I have another problem that makes it a really bad idea to take pain relievers.)
<br />One of the other things I do is weights. I started with a program called Strong Women Stay Young which you can search for on the net. This program was originally created for people to do in their homes to decrease bone loss and increase their mobility. The exercises are clearly shown with animations and it's a great way to get started with weights (to decrease bone pain). It's proven and based on great research by Tufts University.
<br />Another thing that is very helpful for me is Chinese Medicine. A skilled practitioner who knows Chinese herbs - such as the martial arts hit medicines and the kidney tonics can help you get a smile back on your face. My daughter - who is a massage therapist - uses the hit medicine ointments with her elderly arthritic patients with very good results.
<br />A few other tips:
<br />-If you're pretty sensitive to chemicals, smells etc., you may want to investigate doxycycline. It has the most interesting side effect - it actually appears to reduce that sensitivity - and reduce arthritic symptoms. There's been some research lately about using doxycycline for CF because of its anti-inflammatory properties.
<br />- You may notice that magnesium is very good for stopping a suddenly drippy nose and relieving chest congestion and asthma. You'll find more information about this on sites describing magnesium deficiency. There's also been a lot of studies in the past on magnesium and asthma (inhaled, etc.) You can find a lot of these articles using Google Scholar.
<br />- There are quite a few people taking doxycycline and minocin etc. for arthritis, scleroderma and other arthritic problems. To find out more about their experiences search for "The Road Back" site.
<br />Hope you all find the solutions that work for you.