Chronic pain - Let's talk

Posted by leh09 @leh09, Mar 23, 2016

Are there any discussions for chronic pain?

Liked by SpineAZ, bob815c

@suebreen54

And the ingredient in brownies is pot which is illegal but I don’t know
what state your in. Your pain Dr is in charge of that.

Jump to this post

People not understanding what pain does to you and the hopelesness feeling you have about it is a major frustration. I do try to keep a positive attitude each day because I enjoy staying as active as I can and my mind still has not realized that the body can’t do everything that my mind wants it to. My pain doctor is probably doing everything he knows to do. I have a pain pump with Hydromorphone and Fentanyl pumping the drugs into my body 24 hours a day. I can take a up to 4 Hydrocodone in addition a day. I just had my old Spinal Cord Stimulator replace with the newest on the market. I was told that many people that did not get any relief from the old style would get relief from the new one. I was also old that the average patient would get relief by the time they had gone thru 4 or 5 programs on the stimulator. Well with my luck, I have gone thru approximately 18 programs and still can not tell any difference. Each program has 8 stages before you move to the next ptogram, that is 144 stages that I have gone through and still nothing.

I have a major gripe about my Pain doctor, when I see him, I get as high a 4 to 6 minutes time before with him before he leaves. I know that he is busy and he maybe frustrated at not being able to get me any relief (but I doubt it) but I am the one that brings up new meds or procedures to try. If he thinks I will benefit from it he will agree to try it. Considering trying to find another doctor but since he implanted the Pain Pump and both stimulators it will be difficult to find a doctor who wants to take control of my care.

I have considered going to either the Mayo Clinic or there is supposed to be a Hospital that specializes in Neuropathy. I am ready to try anything. If someone can prove to me that eating cow manure will stop the pain, you had better keep a watch on your cows. I really appreciate this Forum in that I do see different treatments or meds mentioned timt to time.

REPLY
@suebreen54

Hi Lady Jane I’m sorry to hear how much pain your in.I have learned that
nobody understands or can feel how bad are pain is. I used to think if only
my Dr could feel my pain then he would know. So after being in severe
chronic pain for years I learned you have to express how much pain your in.
If you are like me that’s hard to do. You have to do it. You have to
communicate the real level of your worst pain. I know that edrenalin and
being out with people can distract us from our pain. That makes it hard to
feel and say what pain level you are at. They always say what is your pain
right now, but you have to think about when you get home and when your in
pain. That is the number I would tell otherwise your not going to get
enough good appropriate pain relief. I know your not getting 0ain relief
because your in pain all the time. You can’t act nice. You have to be
strong and tell the truth about your real pain so you don’t have to be in
pain all the time. You have the right to get appropriate good pain relief.
You shouldn’t be in pain all the time. Tell your Dr tell everyone involved
in your care. God bless

Jump to this post

@suebreen54 I am starting with my 4th pain mngmnt dr. All have said
there is nothing more they can do for me after 5 surgeries ( 2 with
rod and screws), spinal needle procedures of all kinds that did not
help at all. And over 45 meds that I react badly to or do not work.
Every time one goes to these drs one must list your pain level – I
list 8 to 9 with some 10 pain. This month I have had 2 periods of 10
pain with crying. They know the intensity, but what to do. A visit
yesterday – go get another lumbar x-ray to see if there is room to put
in a needle for nerve pain relief. How to tell him I have had so many
x-rays. So I had x-ray dept call him with why the Feb one isn’t one he
can look at, but could not get him on phone. I left msg with nurse.
Why can’t they realize you are having too many x-rays; every 4 months
also abdomen and kidney xrays. Yes, they know my pain – I spend most
of my time on the bed with burning pain across my derriere from the
back sending the periformus nerve signals. I am what they call in
looks 15 years younger, but am 86 now. What to live for. I smile for
people, so they never see the usual 9 pain. But so many have their own
troubles, and drs grow blase (with the e having a french accent mark)
@ladyjane85

Liked by briansr

REPLY
@suebreen54

Hi Lady Jane I’m sorry to hear how much pain your in.I have learned that
nobody understands or can feel how bad are pain is. I used to think if only
my Dr could feel my pain then he would know. So after being in severe
chronic pain for years I learned you have to express how much pain your in.
If you are like me that’s hard to do. You have to do it. You have to
communicate the real level of your worst pain. I know that edrenalin and
being out with people can distract us from our pain. That makes it hard to
feel and say what pain level you are at. They always say what is your pain
right now, but you have to think about when you get home and when your in
pain. That is the number I would tell otherwise your not going to get
enough good appropriate pain relief. I know your not getting 0ain relief
because your in pain all the time. You can’t act nice. You have to be
strong and tell the truth about your real pain so you don’t have to be in
pain all the time. You have the right to get appropriate good pain relief.
You shouldn’t be in pain all the time. Tell your Dr tell everyone involved
in your care. God bless

Jump to this post

@ladyjane85-God bless you. I get to feeling bad and then I see there is always someone worse off than me. I have a Pain Pump implanted and also a Spinal Cord Stimulator implanted and while I am not getting very good results from either, many people do get relief with the stimulator. Nervo has the latest one out and you never even know it is on, unlike the older style where you felt the vibrations in your body and had to turn it way down or off to lay down.

I would suggest you ask your doctor about the stimulator. It is not a bad surgery, you will have the stimulator implanted on one side of your back, under the skin, an incision of about 5 to 6 “ but not deep and one incision over your spine to implant the leads. It will be an incision of about 4”. In a couple of days you will be back to normal except for lifting. I have heard of a lot of people getting real pain relief. I just happen to be one of the ones that it does not help yet (still optimistic) and neither does the pump filled Hydromorphone and Fentanyl.

Good luck!

Liked by salena54

REPLY
@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?

Jump to this post

Constant pain effects us all differently and with the legislature pushing to stop opioids plus the higher cost for medication it becomes a major battle from day to day. I just read of a couple in the South where they could not afford pain medicine for his wife so he killed her then notified family and called the police. They are in their 70’s or more. If I was on his jury I could not find him guilty. In the past she had said she wanted to die the article said. Very sad and needless, all for greed. 19lin

Liked by maryannmarie

REPLY

Welcome back @suebreen54. We haven’t heard from you in a while? How are you?

I also want to tag @briansr @19lin @sharonmay7 and @leh09. Would love to get an update from you all.

REPLY

dbentley – I had the pain stimulator put in about 3 years ago, one
that St Judes uses, true it rumbled my body badly, did no good, and
would continue to rumble even after shut off. Had it taken out last
year. True there may be a newer model, but I am reluctant to have a
6th surgery with 38 staples again. Nothing seems to work for me. hank
you – you have an updated one that seems to work better, but one can
only withstand so many surgeries…..

REPLY
@ladyjane85

dbentley – I had the pain stimulator put in about 3 years ago, one
that St Judes uses, true it rumbled my body badly, did no good, and
would continue to rumble even after shut off. Had it taken out last
year. True there may be a newer model, but I am reluctant to have a
6th surgery with 38 staples again. Nothing seems to work for me. hank
you – you have an updated one that seems to work better, but one can
only withstand so many surgeries…..

Jump to this post

Yes that sounds bad all thoughts surgeries. I think because I have a
degenerative disease surgery has never been a option for me.
So what do you do for your pain? Do you see a specifically a pain Dr.? I
do , and his NP specializes in pain also.
I think the important think is you have pain relief. You have the right to
live without debilitating pain. You should have pain relief. Why did they
give you all those surgeries? Are you taking pain medication? There is
nothing wrong with taking the right pain medication for your pain. No
matter what the medication. Under a pain Drs care you will be fine they
won’t let anything bad happen.
So how is your pain?

Liked by salena54

REPLY
@ladyjane85

dbentley – I had the pain stimulator put in about 3 years ago, one
that St Judes uses, true it rumbled my body badly, did no good, and
would continue to rumble even after shut off. Had it taken out last
year. True there may be a newer model, but I am reluctant to have a
6th surgery with 38 staples again. Nothing seems to work for me. hank
you – you have an updated one that seems to work better, but one can
only withstand so many surgeries…..

Jump to this post

I have gotten myself involved in a few organizations through Facebook and I
like to just use twitter because I read a lot and its fun. The things I’m
doing are for the endangered animals and some for the environment. I do
writing and petition signing and sharing on Facebook. Animal abuse is
something I’ve always worked against but with Facebook there are horrible
things on there. I like political science so I’m always talking and
studying that. The other new thing I’m doing is I live on St Regis River in
the Adirondacks. Iv got several apps from Cornell for bird identification,
I have a Hugh nest in my try and they have a nest watch and bird feeder
watch and mostly I do it from bed or my kitchen window or front French
doors. There are bald eagles I see all the time and blue heron. I’m writing
without my glasses I hope its not to bad. I am on a new drug that’s helping
me its for migraine and I had a epidural 2 weeks ago so I’m OK. Traveling
is hard for me still . I’m trying to wright this with my cat crossing me
one way then the next .well that’s it. I’m doing good. Oh I forgot I’m
doing meditation apps for pain or to relax and for sleep and I think they
are really helping me. Thanks for listening

REPLY

Hi. I’m Michelle and I’ve recently had a lumbar spine surgery, which really went very well for my back and took away all the pain. But about three weeks after the surgery I developed nerve pain in the top of my foot and in my big toe . I just begun to take gabapentin but my system doesn’t seem to enjoy it. I feel spacey but I can tell it lowers the pain except at night. Just today I tried wrapping A lidocaine patch around the top of my foot and kind of over my big toe. It is really made a difference today, then again I am not sure if it’s the gabapentin small dose, or the patch I put on. I have had this chronic pain now for approximately two months perhaps a little longer.

REPLY
@maggie38

Hi. I’m Michelle and I’ve recently had a lumbar spine surgery, which really went very well for my back and took away all the pain. But about three weeks after the surgery I developed nerve pain in the top of my foot and in my big toe . I just begun to take gabapentin but my system doesn’t seem to enjoy it. I feel spacey but I can tell it lowers the pain except at night. Just today I tried wrapping A lidocaine patch around the top of my foot and kind of over my big toe. It is really made a difference today, then again I am not sure if it’s the gabapentin small dose, or the patch I put on. I have had this chronic pain now for approximately two months perhaps a little longer.

Jump to this post

Hello Michelle. You mentioned having lumbar surgery. I am about to have surgery, laminectomy, for severe sciatica pain in my legs that I have had for over two years. I have tried everything else so surgery is the next step. I will be 72 this year and am otherwise in good health. I am hopeful that it will help but the closer I get to the date – June 6th – the more I am thinking too much! What was your surgery for exactly.

REPLY

@twokitties Hello twokitties my name is briansr..I saw your post and wish you all the luck on your surgery. Ive had 8 low back and cervical surgeries, all were a have to. The first two were lumbar L4-S1, I couldn’t walk. You might need some help when you get home. I am done, everyone I’ve had has caused the disc above or below to crumble. This has been a 33yr battle and they want to another one. I’m sure yours will go fine. I asked my dr what was wrong with me and he just said I was messed up. I will say a prayer for a speedy recoverj and no more leg pain. briansr

Liked by salena54

REPLY
@ladyjane85

dbentley – I had the pain stimulator put in about 3 years ago, one
that St Judes uses, true it rumbled my body badly, did no good, and
would continue to rumble even after shut off. Had it taken out last
year. True there may be a newer model, but I am reluctant to have a
6th surgery with 38 staples again. Nothing seems to work for me. hank
you – you have an updated one that seems to work better, but one can
only withstand so many surgeries…..

Jump to this post

I tried the simulator but only as a test. Hurt like hell but when I went
back the dr moved the wires around and it
Felt good, he mapped where they were and then removed them. I already have
a pain pump and did not want another machine in my body, but it felt great.
Maybe you should find another dr to test it first for one or two days and
match it to your pain, then say no or yes. But give it another try because
it might help a lot briansr.Good luck!!!

REPLY
@maggie38

Hi. I’m Michelle and I’ve recently had a lumbar spine surgery, which really went very well for my back and took away all the pain. But about three weeks after the surgery I developed nerve pain in the top of my foot and in my big toe . I just begun to take gabapentin but my system doesn’t seem to enjoy it. I feel spacey but I can tell it lowers the pain except at night. Just today I tried wrapping A lidocaine patch around the top of my foot and kind of over my big toe. It is really made a difference today, then again I am not sure if it’s the gabapentin small dose, or the patch I put on. I have had this chronic pain now for approximately two months perhaps a little longer.

Jump to this post

I would like to hear more from
twokitties. Concerning her upcoming
surgery on her legs.
I seem to be suffering from the same conditions. Seeing chiorpractor
now,not sure.have it so bad in hips and down
legs. Had PT also,cannot take one
mile walk anymore. I too am 72.
Love to hear from anyone.
Success

REPLY
@mlemieux

HI @leh09, I’ve been through a great deal of chronic pain most of my life. What would you like to talk about?

Regards,
Martin R. Lemieux

Jump to this post

I’m sorry 2 hear you’ve been coping with chronic pain a long time. I haven’t had it that long.But,about 20 yrs..I do find it hard 2 cope with so much all the time.Or just about.Take care.

REPLY
@ladyjane85

dbentley – I had the pain stimulator put in about 3 years ago, one
that St Judes uses, true it rumbled my body badly, did no good, and
would continue to rumble even after shut off. Had it taken out last
year. True there may be a newer model, but I am reluctant to have a
6th surgery with 38 staples again. Nothing seems to work for me. hank
you – you have an updated one that seems to work better, but one can
only withstand so many surgeries…..

Jump to this post

to @briansr from ladyjan85 Had the trial on neurostimulator and then
the implant for over one year. Did nothing better than a TENS
unit which is only supposed to make your brain forget the pain and listen
to the rumble. Huh. If a lot of pain, up to 9 and 10 level does no good.
Since this reqired 38 staples to remove, and I had the best neurosurgeon I
certainly would not try it again. They admit it MAY reduce as much as 50%
of some pain….

REPLY
Please login or register to post a reply.