KateH
01-08-2004, 05:23 PM
I've just moved to Colorado and am searching for a medical model physician here for treatment of my chronic neuropathic pain of some 13 years. NOTHING is more frustrating!
I've just returned from seeing an 'interum' Dr. to get my current meds filled until I can see another Dr. who sounds more promising. This guy is supposed to be a pain speciaist from Mayos and believe me, the experience was the same degrading, offensive, humiliating type that I bet at least half of you all have been through.
I immediately knew that I was NOT a patient. I was an issue. A medical controversy. A hot potato. A medical anathama. And above all else... an OPINION that he was going to render in no uncertain terms regardless of my case.
He was good enough to admit upfont that he wasn't the Dr. for me. Yet I sat stunned when he said that he had told patients on opiod medications to get off them entirely. "And do what" I asked, Suffer?" He shrugged and said "Suck it up. It's the card they've been dealt in life." CAN YOU BELIEVE IT!
Needless to say, I'm still stuttering.
He balthered on about my receptors becoming clogged and how eventually no amount of opiods would do. I'm currently on 180 of Avinza daily and getting only about 2 or 3 hours of relief a day from it all. Now I'm no rocket scientist(close!), but I can tell from your very knowledgable postings here that I'm on the low end of the scale, yes?
Your thoughts would be greatly appreciated, as forewarned is forearmed and my appointment with the medical modality physician is slated for the end of the month. Any dialogue we could have on the topic before then would be GREATLY appreciated.
With kind regards and a great deal of respect,
Kate
I've just returned from seeing an 'interum' Dr. to get my current meds filled until I can see another Dr. who sounds more promising. This guy is supposed to be a pain speciaist from Mayos and believe me, the experience was the same degrading, offensive, humiliating type that I bet at least half of you all have been through.
I immediately knew that I was NOT a patient. I was an issue. A medical controversy. A hot potato. A medical anathama. And above all else... an OPINION that he was going to render in no uncertain terms regardless of my case.
He was good enough to admit upfont that he wasn't the Dr. for me. Yet I sat stunned when he said that he had told patients on opiod medications to get off them entirely. "And do what" I asked, Suffer?" He shrugged and said "Suck it up. It's the card they've been dealt in life." CAN YOU BELIEVE IT!
Needless to say, I'm still stuttering.
He balthered on about my receptors becoming clogged and how eventually no amount of opiods would do. I'm currently on 180 of Avinza daily and getting only about 2 or 3 hours of relief a day from it all. Now I'm no rocket scientist(close!), but I can tell from your very knowledgable postings here that I'm on the low end of the scale, yes?
Your thoughts would be greatly appreciated, as forewarned is forearmed and my appointment with the medical modality physician is slated for the end of the month. Any dialogue we could have on the topic before then would be GREATLY appreciated.
With kind regards and a great deal of respect,
Kate
Sponsor
pain research
01-08-2004, 06:07 PM
Hi Kate
I say: meditate, pray, and wipe that Mayo guy from your memory. Then go to the new appointment with an open mind, and fingers crossed!
We've all had one of those.
Good luck.
I say: meditate, pray, and wipe that Mayo guy from your memory. Then go to the new appointment with an open mind, and fingers crossed!
We've all had one of those.
Good luck.
wastefulltick
01-08-2004, 11:09 PM
hi kate
soory for your situation i feel so bad for pain sufferers who cant get good pain management in thier city because of the bad rap opioids are getting it is the only thing that makes my pain tolerable and the people who are abusing them to get high or dr shopping so they can sell them at a huge profit makes it hard for us even the rush deal is causing drs to cut back on opiods and give scripts for costly meds that do nothing for the type of pain we suffer luckly i live in south fl where there are many caring pain management drs willing to give you the quantity of meds as well as breakthru meds to make our lives moe tolerable
your in my payers
have a pain free year
bob
soory for your situation i feel so bad for pain sufferers who cant get good pain management in thier city because of the bad rap opioids are getting it is the only thing that makes my pain tolerable and the people who are abusing them to get high or dr shopping so they can sell them at a huge profit makes it hard for us even the rush deal is causing drs to cut back on opiods and give scripts for costly meds that do nothing for the type of pain we suffer luckly i live in south fl where there are many caring pain management drs willing to give you the quantity of meds as well as breakthru meds to make our lives moe tolerable
your in my payers
have a pain free year
bob
KateH
01-09-2004, 01:37 AM
I have little or no idea how to go about this, but from what I have gleaned from my readings, I think I would like to ask some direct questions about opiate tolerances and their long term medical use of Shoreline, as a vast amount of the type of detailed info I require seems to reside therein.As this may be sort of boring, I thought perhaps there was a way for us to email directly?
Any others who are particularly knowledgable about the more scientific levels of this issue and are willing to share of their time in so generous a fashion would be most wonderful to know about.
How does one go about sending emails directly here, or is that even not allowed here? Perhaps there is no way to dialogue in this way without troubling the entire forum with it all.
As always,thank you all for you ever positive and open responses.
Any others who are particularly knowledgable about the more scientific levels of this issue and are willing to share of their time in so generous a fashion would be most wonderful to know about.
How does one go about sending emails directly here, or is that even not allowed here? Perhaps there is no way to dialogue in this way without troubling the entire forum with it all.
As always,thank you all for you ever positive and open responses.
twisten
01-09-2004, 10:09 AM
Hi Kate. No, we aren't allowed to post our e-mails on here. Put Shoreline's name in the subject of your post though and he is sure to see it and respond to it.
Shoreline
01-09-2004, 11:51 AM
Hi Kate, I assume you mean a doctor that will follow a medical model for treatment of a specific condition. Unfortunately there really isn't a consensus on what the medical model is for treating Chronic pain or a specific painful condition.
A doctor that is a member of the american pain society is more likely to subscribe to their opiate use statement but there really isn't a standard to which to hold a doctor to, as far as treatment of pain. Some one with your exact same condition, which isn't likely may need half the amount of opiates you need and another will require 3-5 times the opiate you need for relief.
I have a feeling your limited relief from avinza only occurs during the initial release of the medication. Avinza is designed to give an initial burst of med and then slowly release over time. I never really figured out why the initial burst would be needed since the goal is to maintain a smooth serum level. It kind of seems like the would be somewhat of a let down after the initial release wears off.
Presently I take meth and there are several good reasons to use methadone for neuropathic pain but I have had great success with Kadian only at a much higher dioose. 200mgs TID. I also use BT meds and firmly believe that with the longer acting meds, particularly 24 hours and up like Duragesic, The base dose can be limited by the use of BT meds.
Like most people I have a pattern to my pain. I hurt more at night from the daily activity. With a 24 hour med taking an additional dose of Kadian or avinza would leave me over medicated the next day when all I required was extra relief at night which can be obtained with BT meds.
Because there is no medcal model, the use of BT meds can be as contreversial as the use of long acting meds. As far as eventually becoming tolerant to all opiates at any dose, that's not true. I have never seen it happen. I have seen folks that need to combine opiates Like Duragesic with Kadian or meth but treatment will certainly differ from one doc to another regardles ofwhere they were trained.
Mayo doesn't neccesarrily assure you proper treatment with opiates. In fact Mayo isn't particularly well known for their use of opiates and when they do they expect your local doc to continue to prescribe and that doesn't always fly.
If you hve a particular question feel free to ask.Sorry I'm in a bit of a hurry right now but I'll be back. Take care and welcome. Shore
A doctor that is a member of the american pain society is more likely to subscribe to their opiate use statement but there really isn't a standard to which to hold a doctor to, as far as treatment of pain. Some one with your exact same condition, which isn't likely may need half the amount of opiates you need and another will require 3-5 times the opiate you need for relief.
I have a feeling your limited relief from avinza only occurs during the initial release of the medication. Avinza is designed to give an initial burst of med and then slowly release over time. I never really figured out why the initial burst would be needed since the goal is to maintain a smooth serum level. It kind of seems like the would be somewhat of a let down after the initial release wears off.
Presently I take meth and there are several good reasons to use methadone for neuropathic pain but I have had great success with Kadian only at a much higher dioose. 200mgs TID. I also use BT meds and firmly believe that with the longer acting meds, particularly 24 hours and up like Duragesic, The base dose can be limited by the use of BT meds.
Like most people I have a pattern to my pain. I hurt more at night from the daily activity. With a 24 hour med taking an additional dose of Kadian or avinza would leave me over medicated the next day when all I required was extra relief at night which can be obtained with BT meds.
Because there is no medcal model, the use of BT meds can be as contreversial as the use of long acting meds. As far as eventually becoming tolerant to all opiates at any dose, that's not true. I have never seen it happen. I have seen folks that need to combine opiates Like Duragesic with Kadian or meth but treatment will certainly differ from one doc to another regardles ofwhere they were trained.
Mayo doesn't neccesarrily assure you proper treatment with opiates. In fact Mayo isn't particularly well known for their use of opiates and when they do they expect your local doc to continue to prescribe and that doesn't always fly.
If you hve a particular question feel free to ask.Sorry I'm in a bit of a hurry right now but I'll be back. Take care and welcome. Shore
Shoreline
01-10-2004, 01:50 PM
Kate, Nobody will mind a detailed discussion about your individual problem. Although you may feel you condition is unique I would be willing to bet there are others that are dealing with the same problem. Knowing a little more about the cause of your neuro pain and the treatments you have tried will help folks in suggesting looking into specific treatment plans for your specific condition. Whether it's nerve pain caused by disc problems, NFM, PN, IC or any other condition.
There really aren't topics that are embarrasing when we have all experienced the fun side effects of many of these meds or conditions whether it be loss of libido, constipation, urinnary retention, depression etc. It' all part of the CP experience that only folks that have lived it truly undersatand. I look forward to exchanging some good info and learning what you have to offer through your experiences.
Although some PM docs may specialize in a specific problem like IC or headaches or spinal problems treatment of pain is still treatment of pain . A multifaceceted aproach usually works best for most people wether it's meds,diet,excercise, combination therapies like nerve blocks, TP injections or medication infusions. You may even find there are modalities you haven't been exposed to because the docs aren't aware of every modality unless they set their clinic up with a combination of docs to cover most of the CP causes.We even have folks with pump and SCS experience.
I know nerve pain is the hardeat to treat and opiates alone rarely manage severe nevre pain so finding adjunct modalities seems to be what works best. I look forward to your next post. I hope your comfortable in the forum invironment because I kinda doubt you can bring up a topic that hasn't already been discussed.
Take care, Shore
There really aren't topics that are embarrasing when we have all experienced the fun side effects of many of these meds or conditions whether it be loss of libido, constipation, urinnary retention, depression etc. It' all part of the CP experience that only folks that have lived it truly undersatand. I look forward to exchanging some good info and learning what you have to offer through your experiences.
Although some PM docs may specialize in a specific problem like IC or headaches or spinal problems treatment of pain is still treatment of pain . A multifaceceted aproach usually works best for most people wether it's meds,diet,excercise, combination therapies like nerve blocks, TP injections or medication infusions. You may even find there are modalities you haven't been exposed to because the docs aren't aware of every modality unless they set their clinic up with a combination of docs to cover most of the CP causes.We even have folks with pump and SCS experience.
I know nerve pain is the hardeat to treat and opiates alone rarely manage severe nevre pain so finding adjunct modalities seems to be what works best. I look forward to your next post. I hope your comfortable in the forum invironment because I kinda doubt you can bring up a topic that hasn't already been discussed.
Take care, Shore