Chronic pain - Let's talk

Posted by leh09 @leh09, Mar 23, 2016

Are there any discussions for chronic pain?

Interested in more discussions like this? Go to the Chronic Pain group.

@seanbeck

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.

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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

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.

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.

What is really needed? This is a question for everyone who uses this site.

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.

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.

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.

There definitely needs to be more research into pain, and better methods of treating pain.

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.

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

Sent from Windows Mail

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You’ve hit the nail on the head. One thing that needs to change is the pain
rating scale. I am asked give me a number, well do you want my low back, my
neck, my left shoulder, my hips, my lower legs, my right arm? All I know is
my dr needs to step up and help. I’m not the normal patient. I fee as
though I have cancer but have not been told how long do I have. Pain is
pain it is immeasurable from someone looking in, only the person looking
out ever knows! briansr

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@briansr

You’ve hit the nail on the head. One thing that needs to change is the pain
rating scale. I am asked give me a number, well do you want my low back, my
neck, my left shoulder, my hips, my lower legs, my right arm? All I know is
my dr needs to step up and help. I’m not the normal patient. I fee as
though I have cancer but have not been told how long do I have. Pain is
pain it is immeasurable from someone looking in, only the person looking
out ever knows! briansr

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LOL!!!! You are so right.

salena

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@anisha1232

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.

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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?

Thanks,
Danielle Mixon

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@briansr

You’ve hit the nail on the head. One thing that needs to change is the pain
rating scale. I am asked give me a number, well do you want my low back, my
neck, my left shoulder, my hips, my lower legs, my right arm? All I know is
my dr needs to step up and help. I’m not the normal patient. I fee as
though I have cancer but have not been told how long do I have. Pain is
pain it is immeasurable from someone looking in, only the person looking
out ever knows! briansr

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Anyone in the Warrensburg, Missouri area so we could start our own group.
Meet and talk, have some type of socials to get our mind off our problems.
But most of all have someone to tell our problems to, to unload where most
people don’t want to hear about all our problems, even doctors. To be able
to get a couple of pain Drs. to come to a meeting so that we might get them
to understand!

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Hello 19lin – you write with deep intelligence, and I agree with
everything you are saying. I cannot take prescribed meds, due to
sensitivity, but people feel sorry and talk about marijuana, not legal
here. And the states where it is legal it becomes prescribed with a
high price tag…….@ladyjane

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@excentrk

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?

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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

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@excentrk

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?

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WOW!!!!!!
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

REPLY

Hello Sharonmay7,

Thanks for your reply! I apologize for getting back to you so late — its
9:28 PM and my day (night) is just starting. I’ve been asleep almost all
day since 6:30 AM when I tried to start today. Yes the pain is really bad
today. I’ve had to resort to taking the prescribed narcotics to try to
ease the pain, and one of their several side effects is that I sleep all
the time.

Although I have a B.S. in telecommunications, I can’t find a job because I
always have to take a nap during the normal workday. Additionally, no
company wants to take a chance on me because I am too much of a liability.
If I fall on the job, they all think I will sue the company. Even though I
have offered to sign a waiver stating I would never sue any company that
interviewed me, I have still been rejected. Yes it’s really tough trying
to live on a fixed income. Sometimes I get so mad at the politicians who
always seem to find a “loop hole” so there is rarely a real COLA on my SSDI
check, but really that doesn’t help. I have finally realized that a bad
attitude doesn’t help the pain at all.

I have tried just about every “latest cure” for the arthritis, but nothing
has truly worked. My last attempt was to buy Dr. Ho’s pain therapy system
— but it barely helps. It’s a TENS unit that is pretty strong and has 7
modes or treatment options. The real problem though is that for it to
really work, I need to attach 16 TENS pads to my whole body, and then run
it all day long. Additionally, it does nothing for the constant migraines
I suffer from.

I too joined this site in hope that I might be able to find something that
will help me. So it was really nice to hear from you. I have tried and
tried to help my family (brother and sister-in-law and their grown
children) to understand why I rarely make any of the family get togethers,
but honestly, they have no clue. Although I wouldn’t wish this on my worst
enemy, it wasn’t until my brother hurt his knee and couldn’t walk without
limping, that he finally caught an idea of what it’s like to have constant
pain all the time. Fortunately, a shot of cortisone eliminated his knee
pain so of course, he told me to make sure I should see his doctor so I
could get cortisone shot in every area that causes the pain. I kept his
request to myself because I would need at least 30 or more shots of
cortisone if it were to help, and there is no guarantee that it would
help. Oh well…

Thanks so much for listening Sharonmay7! I really appreciate being able to
talk or chat with someone about this hell I live in. I think the hardest
point for me is that I watch my body falling apart while my mind is still
active. Unfortunately another side effect of the narcotics is that I can’t
seem to remember much of anything. My short term and long term memory is
fading, and if I don’t write most everything down and make notes for
myself, I forget what I am doing.

I hope you don’t mind, but I added your name to my prayer list, and truly,
I pray that things will improve for you. If you don’t mind, and please
know I am not a ‘stalker,’ what state are you located in? Thanks, I live
in Arizona — actually I live in Tucson, Arizona. Thank you again for
the good thoughts and your wish for better nights for me. I do hope to
hear back from you as well.

Best Wishes,

Bob815c

REPLY
@bob815c

Hello Sharonmay7,

Thanks for your reply! I apologize for getting back to you so late — its
9:28 PM and my day (night) is just starting. I’ve been asleep almost all
day since 6:30 AM when I tried to start today. Yes the pain is really bad
today. I’ve had to resort to taking the prescribed narcotics to try to
ease the pain, and one of their several side effects is that I sleep all
the time.

Although I have a B.S. in telecommunications, I can’t find a job because I
always have to take a nap during the normal workday. Additionally, no
company wants to take a chance on me because I am too much of a liability.
If I fall on the job, they all think I will sue the company. Even though I
have offered to sign a waiver stating I would never sue any company that
interviewed me, I have still been rejected. Yes it’s really tough trying
to live on a fixed income. Sometimes I get so mad at the politicians who
always seem to find a “loop hole” so there is rarely a real COLA on my SSDI
check, but really that doesn’t help. I have finally realized that a bad
attitude doesn’t help the pain at all.

I have tried just about every “latest cure” for the arthritis, but nothing
has truly worked. My last attempt was to buy Dr. Ho’s pain therapy system
— but it barely helps. It’s a TENS unit that is pretty strong and has 7
modes or treatment options. The real problem though is that for it to
really work, I need to attach 16 TENS pads to my whole body, and then run
it all day long. Additionally, it does nothing for the constant migraines
I suffer from.

I too joined this site in hope that I might be able to find something that
will help me. So it was really nice to hear from you. I have tried and
tried to help my family (brother and sister-in-law and their grown
children) to understand why I rarely make any of the family get togethers,
but honestly, they have no clue. Although I wouldn’t wish this on my worst
enemy, it wasn’t until my brother hurt his knee and couldn’t walk without
limping, that he finally caught an idea of what it’s like to have constant
pain all the time. Fortunately, a shot of cortisone eliminated his knee
pain so of course, he told me to make sure I should see his doctor so I
could get cortisone shot in every area that causes the pain. I kept his
request to myself because I would need at least 30 or more shots of
cortisone if it were to help, and there is no guarantee that it would
help. Oh well…

Thanks so much for listening Sharonmay7! I really appreciate being able to
talk or chat with someone about this hell I live in. I think the hardest
point for me is that I watch my body falling apart while my mind is still
active. Unfortunately another side effect of the narcotics is that I can’t
seem to remember much of anything. My short term and long term memory is
fading, and if I don’t write most everything down and make notes for
myself, I forget what I am doing.

I hope you don’t mind, but I added your name to my prayer list, and truly,
I pray that things will improve for you. If you don’t mind, and please
know I am not a ‘stalker,’ what state are you located in? Thanks, I live
in Arizona — actually I live in Tucson, Arizona. Thank you again for
the good thoughts and your wish for better nights for me. I do hope to
hear back from you as well.

Best Wishes,

Bob815c

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Bob815c,

I live in PA, you would not like our winters up here!!! The cold winters are hard on pain!Thanks for your prayers!! I’m married and have 3 grown children and 3 grandchildren!! Hard to believe…but they are my light!! That’s what makes me smile! You are so right abounded people not being able understand!! Even if they try. They are the lucky ones. My husband, Doug tries to help when i have migraines. He himself has had migraines so he dose understand that part! But day after day I think he gets feeling lonely when I’m in bed, ten days in row!!! Well you stay nice and warm down there in the sunshine…. Hope tomorrow is a better day!! Take care…..sharon

REPLY

@mariah – I thought the answer was the nerustimulator also – alas it is just something stronger than a TENS unit. Did me no good with my great pain, and yes, one cannot have an MRI. Mine was removed after more than a year with my neurosurgeon doing my 5th surgery. Good luck.

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@bob815c

Hello Sharonmay7,

Thanks for your reply! I apologize for getting back to you so late — its
9:28 PM and my day (night) is just starting. I’ve been asleep almost all
day since 6:30 AM when I tried to start today. Yes the pain is really bad
today. I’ve had to resort to taking the prescribed narcotics to try to
ease the pain, and one of their several side effects is that I sleep all
the time.

Although I have a B.S. in telecommunications, I can’t find a job because I
always have to take a nap during the normal workday. Additionally, no
company wants to take a chance on me because I am too much of a liability.
If I fall on the job, they all think I will sue the company. Even though I
have offered to sign a waiver stating I would never sue any company that
interviewed me, I have still been rejected. Yes it’s really tough trying
to live on a fixed income. Sometimes I get so mad at the politicians who
always seem to find a “loop hole” so there is rarely a real COLA on my SSDI
check, but really that doesn’t help. I have finally realized that a bad
attitude doesn’t help the pain at all.

I have tried just about every “latest cure” for the arthritis, but nothing
has truly worked. My last attempt was to buy Dr. Ho’s pain therapy system
— but it barely helps. It’s a TENS unit that is pretty strong and has 7
modes or treatment options. The real problem though is that for it to
really work, I need to attach 16 TENS pads to my whole body, and then run
it all day long. Additionally, it does nothing for the constant migraines
I suffer from.

I too joined this site in hope that I might be able to find something that
will help me. So it was really nice to hear from you. I have tried and
tried to help my family (brother and sister-in-law and their grown
children) to understand why I rarely make any of the family get togethers,
but honestly, they have no clue. Although I wouldn’t wish this on my worst
enemy, it wasn’t until my brother hurt his knee and couldn’t walk without
limping, that he finally caught an idea of what it’s like to have constant
pain all the time. Fortunately, a shot of cortisone eliminated his knee
pain so of course, he told me to make sure I should see his doctor so I
could get cortisone shot in every area that causes the pain. I kept his
request to myself because I would need at least 30 or more shots of
cortisone if it were to help, and there is no guarantee that it would
help. Oh well…

Thanks so much for listening Sharonmay7! I really appreciate being able to
talk or chat with someone about this hell I live in. I think the hardest
point for me is that I watch my body falling apart while my mind is still
active. Unfortunately another side effect of the narcotics is that I can’t
seem to remember much of anything. My short term and long term memory is
fading, and if I don’t write most everything down and make notes for
myself, I forget what I am doing.

I hope you don’t mind, but I added your name to my prayer list, and truly,
I pray that things will improve for you. If you don’t mind, and please
know I am not a ‘stalker,’ what state are you located in? Thanks, I live
in Arizona — actually I live in Tucson, Arizona. Thank you again for
the good thoughts and your wish for better nights for me. I do hope to
hear back from you as well.

Best Wishes,

Bob815c

Jump to this post

My doctor has prescribed Nuvigil for me. Lately the insurance has been a
problem but it works very well. I would fall asleep at stop lights.
Hope you get some relief.

REPLY
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