Hello everyone! I have dealt with Chronic Pain since I was about 19. I went to the PRC Program at Mayo Clinic in Jacksonville ran by Dr. Christopher Sletten. This program helped me so much in learning to deal with it and every aspect of my life. I would recommend this program to anyone who deals with Chronic Pain. I do believe all 3 Mayo campuses offer it now.
Agreed the cost and laws are a problem. Our legislature approved use for medical treatment but the health insurance companies didn’t, probably since it is still a federal offense. I like to try all alternatives and acupuncture and hypnosis have proven effective for some. Acupuncture helped my energy, but not really the pain and the needles still hurt depending where they put them. You need a certified acupuncturists to be sure they know what they are doing. Hypnosis does not work on everyone, but I have seen shows where people undergo surgery with only hypnosis as anesthesia. Still if you have not tried them you should if possible. At Mayo’s I tried an experimental use of ECT which helped, but the side effects stopped me from continuing with it. I do believe in trying all methods that seem to have some proven success. 19lin<br />
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Sent from Windows Mail
This is my very first post ever, and first "group" message board I've ever joined so please bear with me if this is a bit longer than a typical post (unclear to the unwritten rules). Sorry, so I recently turned 40, have been on long term SSDI since '07, and am 3 mos. post-op from my 13th spine surgery. Since '04 it was about one a year, then from '08 on occasionally 2X a year. I'm fused both anterior and posterior cervically from 3-T1, with a bunch of lami's and disc's at T7-9, but also fused front ant back from L3-S1. I'm exhausted researching alternative modes of relief, like has anyone tried the following: INTRATHECAL PAIN PUMP, (I'm on my 2nd spinal cord stimulator, for those considering, save your time, money, and the rise in your expectations), COLD LASER THERAPY, PLATELET (or Plasma) REPLACEMENT THERAPY? I dont mean to complain, because I know they're are far more people out there in more pain than myself. I'm just looking for alternatives to see what might help, besides popping a pill every 6 hours, because I would really love to get back to work. My apologies if my soapbox was a bit on the big side.
Just what I said would happen is happening read the following article : http://www.theepochtimes.com/n3/2009489-6-killed-22-overdosed-from-suspected-counterfeit-painkillers-in-california/?iid=ob_article_footer_expansion <br />
<br />
Smugglers gave the medicine to unsuspecting users and they died; what did authorities do but add more regulations to make it harder for pain suffers to get pain medicine. <br />
<br />
As I said before by making more restrictions on pain medicine and making it harder for doctors to give it out and patients to get it, the pain suffers will go to illegal or unsafe sites to get the medicine they need. The result will be more deaths that no pain suffer or anyone wants. <br />
<br />
What is really needed? This is a question for everyone who uses this site.<br />
<br />
From my point of view we need an objective method of measuring pain in each individual, not some personal estimate of how much pain we have today.<br />
<br />
An objective measure would allow doctors and patients to determine how much pain a person is experiencing. It would let them see how effective or ineffective a pain medicine is in lessening the pain and help both doctor and patient determine what changes need to take place.<br />
<br />
Another suggestion is to allow pain suffers the right to euthanasia or physician assisted dying, so that only those who want to and are willing to die to end their suffering will die, instead of some haphazard method that exists today where unwilling and innocent people take pills they think will help them, but end up dead or worst, from an overdose or street drug. By worst I mean how crippled you can become from using the wrong methods.<br />
<br />
There definitely needs to be more research into pain, and better methods of treating pain.<br />
<br />
In discussions with my doctor he had me review what long term use of opioids would do to me and how they would effect my body and brain. Such as frontal lobe atrophy and opioid induced hyperalgesia. He does not want me to get into a situation where I am more damaged by the medicine that is suppose to help me. He is making me very aware of the CONs as well as the pros of the treatment I am asking for, so that I will go into this with my eyes open.<br />
<br />
My fear is the knee jerk reaction that our political leaders seem to have, where they will make all opioids illegal except for a very few which will result in more unintentional deaths as this article shows. 19lin<br />
<br />
<br />
<br />
<br />
<br />
<br />
Sent from Windows Mail
You've hit the nail on the head. One thing that needs to change is the pain<br />
rating scale. I am asked give me a number, well do you want my low back, my<br />
neck, my left shoulder, my hips, my lower legs, my right arm? All I know is<br />
my dr needs to step up and help. I'm not the normal patient. I fee as<br />
though I have cancer but have not been told how long do I have. Pain is<br />
pain it is immeasurable from someone looking in, only the person looking<br />
out ever knows! briansr<br />
You've hit the nail on the head. One thing that needs to change is the pain<br />
rating scale. I am asked give me a number, well do you want my low back, my<br />
neck, my left shoulder, my hips, my lower legs, my right arm? All I know is<br />
my dr needs to step up and help. I'm not the normal patient. I fee as<br />
though I have cancer but have not been told how long do I have. Pain is<br />
pain it is immeasurable from someone looking in, only the person looking<br />
out ever knows! briansr<br />
Hello everyone! I have dealt with Chronic Pain since I was about 19. I went to the PRC Program at Mayo Clinic in Jacksonville ran by Dr. Christopher Sletten. This program helped me so much in learning to deal with it and every aspect of my life. I would recommend this program to anyone who deals with Chronic Pain. I do believe all 3 Mayo campuses offer it now.
I was going to do that program but my insurance wouldn't pay for it and I couldn't afford to pay out of pocket. I am glad to hear it worked for you. If you don't mind me asking how did you pay for it?<br />
<br />
Thanks,<br />
Danielle Mixon<br />
You've hit the nail on the head. One thing that needs to change is the pain<br />
rating scale. I am asked give me a number, well do you want my low back, my<br />
neck, my left shoulder, my hips, my lower legs, my right arm? All I know is<br />
my dr needs to step up and help. I'm not the normal patient. I fee as<br />
though I have cancer but have not been told how long do I have. Pain is<br />
pain it is immeasurable from someone looking in, only the person looking<br />
out ever knows! briansr<br />
Anyone in the Warrensburg, Missouri area so we could start our own group.<br />
Meet and talk, have some type of socials to get our mind off our problems.<br />
But most of all have someone to tell our problems to, to unload where most<br />
people don't want to hear about all our problems, even doctors. To be able<br />
to get a couple of pain Drs. to come to a meeting so that we might get them<br />
to understand!<br />
Hello 19lin - you write with deep intelligence, and I agree with<br />
everything you are saying. I cannot take prescribed meds, due to<br />
sensitivity, but people feel sorry and talk about marijuana, not legal<br />
here. And the states where it is legal it becomes prescribed with a<br />
high price tag.......@ladyjane<br />
I take 200 mg Tramadol and 900 MG of gabapentin throughout the day. for pinched nerves and arthritis pain. I also take a full aspirin every morning and stil, I cannot walk more than 2 blocks without severe back pain. I am soooo tired. Anybody else who is just fatigued from constant pain?
Hello Excentrk, I am so sorry to say this, but I know exactly what you are feeling! I am a 63 yo disabled guy who has suffered from a systemic arthritis since I was 5 years old. I had my first explosion of arthritis at 5, my second at 28, and the last one at 48. The last one left me crippled so badly I had to use an electronic wheel-chair to try to get around, I was diagnosed as having an "Unspecified form of arthritis, fibromyalgia, and finally type two diabetes when I was 48. I have seen over 100 doctors to try to get some help to control the pain and it wasn't until I moved to Tucson, that I actually found a doctor who believed that soft tissue problems could cause pain. I have so many spurs in my spine that the doctors and the specialists ruled out any operation because it was "too risky."
Believe me I know how chronic pain can drain one of any energy. The only thing the doctor's can do is prescribe more and more narcotic pain killers for me, but I hate to take them as they really mess up my head as well as my insides. I am so tired of fighting this pain everyday and since I am on disability it is so hard to make ends meet. I sleep close to 20 hours a day now and everytime I see the doc, he tells me how I have to start exercising -- but provides no answer on how to deal with the pain or the fatigue. My pain number is always a 10 or a 15 on a 1 to 10 scale. I just don't know what to do any more. I've tried everything on market to help ease the pain, and have spent all my savings on every new "miracle": cure, but here I am still crippled up.
Thanks for listening everyone. Please forgive me for 'crying' on your shoulders I know a real man is supposed to be able to handle all of this without whining! I just wish I could help others get through this horrible time in our lives....;Best Wishes to everyone, and I will continue to pray for everyone!
Excentrk I am so happy that you can walk those 2 blocks. I hurt so much my walking gait is only 4 to 6 inches. I look like an Ape when I walk because i am so bent over. That's one of my most frustrating points: my doctor thinks I should be able to use a treadmill or even lift weights, but by the time I park and walk to the gym, I am so tired I almost would fall over. Imagine if you can trying to walk 100 feet only taking a 6 inch step each time. I don't know why these Doctors can't or won't understand what it is like to take a 6 inch step, -all the time. Anyway You are doing Great! I pray you can keep it up.
I take 200 mg Tramadol and 900 MG of gabapentin throughout the day. for pinched nerves and arthritis pain. I also take a full aspirin every morning and stil, I cannot walk more than 2 blocks without severe back pain. I am soooo tired. Anybody else who is just fatigued from constant pain?
WOW!!!!!! <br />
I can not even image what your days are like!! I am so lucky to only have MY pain! I read somewhere that if you throw all your problems in a Pail and could see everyone else's....you would be glad to grab yours back!!!! How true that is! Thanks for opening my eyes tonight .things can always be worse! And sometimes or some days we get cought up in our own pain. And yes I to am on a fixed income. This is never easy cause you want to try everything hoping that this time just maybe..... You sound links me, I'm always trying to find what is new to try. That's why I like this site you don't have to worry who your dealing with. I've found lots of good information. Hope to here from you again. Here's to better nights sleep then the last. Yours, sharon
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Hello everyone! I have dealt with Chronic Pain since I was about 19. I went to the PRC Program at Mayo Clinic in Jacksonville ran by Dr. Christopher Sletten. This program helped me so much in learning to deal with it and every aspect of my life. I would recommend this program to anyone who deals with Chronic Pain. I do believe all 3 Mayo campuses offer it now.
Agreed the cost and laws are a problem. Our legislature approved use for medical treatment but the health insurance companies didn’t, probably since it is still a federal offense. I like to try all alternatives and acupuncture and hypnosis have proven effective for some. Acupuncture helped my energy, but not really the pain and the needles still hurt depending where they put them. You need a certified acupuncturists to be sure they know what they are doing. Hypnosis does not work on everyone, but I have seen shows where people undergo surgery with only hypnosis as anesthesia. Still if you have not tried them you should if possible. At Mayo’s I tried an experimental use of ECT which helped, but the side effects stopped me from continuing with it. I do believe in trying all methods that seem to have some proven success. 19lin<br />
<br />
<br />
<br />
<br />
<br />
<br />
Sent from Windows Mail
Just what I said would happen is happening read the following article : http://www.theepochtimes.com/n3/2009489-6-killed-22-overdosed-from-suspected-counterfeit-painkillers-in-california/?iid=ob_article_footer_expansion <br />
<br />
Smugglers gave the medicine to unsuspecting users and they died; what did authorities do but add more regulations to make it harder for pain suffers to get pain medicine. <br />
<br />
As I said before by making more restrictions on pain medicine and making it harder for doctors to give it out and patients to get it, the pain suffers will go to illegal or unsafe sites to get the medicine they need. The result will be more deaths that no pain suffer or anyone wants. <br />
<br />
What is really needed? This is a question for everyone who uses this site.<br />
<br />
From my point of view we need an objective method of measuring pain in each individual, not some personal estimate of how much pain we have today.<br />
<br />
An objective measure would allow doctors and patients to determine how much pain a person is experiencing. It would let them see how effective or ineffective a pain medicine is in lessening the pain and help both doctor and patient determine what changes need to take place.<br />
<br />
Another suggestion is to allow pain suffers the right to euthanasia or physician assisted dying, so that only those who want to and are willing to die to end their suffering will die, instead of some haphazard method that exists today where unwilling and innocent people take pills they think will help them, but end up dead or worst, from an overdose or street drug. By worst I mean how crippled you can become from using the wrong methods.<br />
<br />
There definitely needs to be more research into pain, and better methods of treating pain.<br />
<br />
In discussions with my doctor he had me review what long term use of opioids would do to me and how they would effect my body and brain. Such as frontal lobe atrophy and opioid induced hyperalgesia. He does not want me to get into a situation where I am more damaged by the medicine that is suppose to help me. He is making me very aware of the CONs as well as the pros of the treatment I am asking for, so that I will go into this with my eyes open.<br />
<br />
My fear is the knee jerk reaction that our political leaders seem to have, where they will make all opioids illegal except for a very few which will result in more unintentional deaths as this article shows. 19lin<br />
<br />
<br />
<br />
<br />
<br />
<br />
Sent from Windows Mail
You've hit the nail on the head. One thing that needs to change is the pain<br />
rating scale. I am asked give me a number, well do you want my low back, my<br />
neck, my left shoulder, my hips, my lower legs, my right arm? All I know is<br />
my dr needs to step up and help. I'm not the normal patient. I fee as<br />
though I have cancer but have not been told how long do I have. Pain is<br />
pain it is immeasurable from someone looking in, only the person looking<br />
out ever knows! briansr<br />
-
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1 ReactionLOL!!!! You are so right.<br />
<br />
salena<br />
I was going to do that program but my insurance wouldn't pay for it and I couldn't afford to pay out of pocket. I am glad to hear it worked for you. If you don't mind me asking how did you pay for it?<br />
<br />
Thanks,<br />
Danielle Mixon<br />
Anyone in the Warrensburg, Missouri area so we could start our own group.<br />
Meet and talk, have some type of socials to get our mind off our problems.<br />
But most of all have someone to tell our problems to, to unload where most<br />
people don't want to hear about all our problems, even doctors. To be able<br />
to get a couple of pain Drs. to come to a meeting so that we might get them<br />
to understand!<br />
-
Like -
Helpful -
Hug
1 ReactionHello 19lin - you write with deep intelligence, and I agree with<br />
everything you are saying. I cannot take prescribed meds, due to<br />
sensitivity, but people feel sorry and talk about marijuana, not legal<br />
here. And the states where it is legal it becomes prescribed with a<br />
high price tag.......@ladyjane<br />
Hello Excentrk, I am so sorry to say this, but I know exactly what you are feeling! I am a 63 yo disabled guy who has suffered from a systemic arthritis since I was 5 years old. I had my first explosion of arthritis at 5, my second at 28, and the last one at 48. The last one left me crippled so badly I had to use an electronic wheel-chair to try to get around, I was diagnosed as having an "Unspecified form of arthritis, fibromyalgia, and finally type two diabetes when I was 48. I have seen over 100 doctors to try to get some help to control the pain and it wasn't until I moved to Tucson, that I actually found a doctor who believed that soft tissue problems could cause pain. I have so many spurs in my spine that the doctors and the specialists ruled out any operation because it was "too risky."
Believe me I know how chronic pain can drain one of any energy. The only thing the doctor's can do is prescribe more and more narcotic pain killers for me, but I hate to take them as they really mess up my head as well as my insides. I am so tired of fighting this pain everyday and since I am on disability it is so hard to make ends meet. I sleep close to 20 hours a day now and everytime I see the doc, he tells me how I have to start exercising -- but provides no answer on how to deal with the pain or the fatigue. My pain number is always a 10 or a 15 on a 1 to 10 scale. I just don't know what to do any more. I've tried everything on market to help ease the pain, and have spent all my savings on every new "miracle": cure, but here I am still crippled up.
Thanks for listening everyone. Please forgive me for 'crying' on your shoulders I know a real man is supposed to be able to handle all of this without whining! I just wish I could help others get through this horrible time in our lives....;Best Wishes to everyone, and I will continue to pray for everyone!
Excentrk I am so happy that you can walk those 2 blocks. I hurt so much my walking gait is only 4 to 6 inches. I look like an Ape when I walk because i am so bent over. That's one of my most frustrating points: my doctor thinks I should be able to use a treadmill or even lift weights, but by the time I park and walk to the gym, I am so tired I almost would fall over. Imagine if you can trying to walk 100 feet only taking a 6 inch step each time. I don't know why these Doctors can't or won't understand what it is like to take a 6 inch step, -all the time. Anyway You are doing Great! I pray you can keep it up.
Best Wishes,
Bob815c
WOW!!!!!! <br />
I can not even image what your days are like!! I am so lucky to only have MY pain! I read somewhere that if you throw all your problems in a Pail and could see everyone else's....you would be glad to grab yours back!!!! How true that is! Thanks for opening my eyes tonight .things can always be worse! And sometimes or some days we get cought up in our own pain. And yes I to am on a fixed income. This is never easy cause you want to try everything hoping that this time just maybe..... You sound links me, I'm always trying to find what is new to try. That's why I like this site you don't have to worry who your dealing with. I've found lots of good information. Hope to here from you again. Here's to better nights sleep then the last. Yours, sharon
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