Long-term meds for chronic, inoperable, intractable pain

Long-term meds for chronic, inoperable, intractable pain

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Anonymous (not verified)
Title: Member
Long-term meds for chronic, inoperable, intractable pain

Hi everyone,I'm brand spanking new here and I wanted to get a general idea as to how many of you have been told by your PM (or whichever type of doc you see for PM) that you will always have the conditions that you have, will always be on some form of opiate/opioid medication and have no surgical options to help to "fix" or cure your conditions.My situation is a complex one (not that this is a rare thing on a forum like this  Wink ) and I've posted on the Welcome/New members forum with a brief rundown of my pain issues, but briefly, I have widespread Myofascial Pain, DDD, Several bulges/herniations with some moderate anular tearing, Stenosis, spondylosis and peripheral neuropathy.I have a wonderful PM doc, who I travel about an hour each way to see (well worth it) and I have taken meds, every day for the past 7 years and have been told that unless some sort of advancement in the medical field happens, will be taking these meds for the rest of my life. (I'm a 47 yr old mom of 1 daughter and the very happily married wife of a very supportive husband, surely sent from heaven above.)As I'm sure many people here can relate, my life has been forever changed and I believe I am at a decent level of acceptance, after 8 years or so of living with chronic pain.Are there others here who are in the same creaky boat that I am?  Or are the majority in a transitional phase between surgery and recovery? I would love to hear how you have learned to cope and function in your daily lives and how you feel about being permenantly "sentenced" to this crazy life.I've tried to read through some of the other posts here, but it would probably take so long, that I would never get to actually post anything.Sorry this was a bit long. As you will probably see, I am a detail oriented kind of gal, but I have lots of understanding and support to offer and hopefully some wisdom to share as well. Thanks in advance for the anticipated input.  Mitzi

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Makin It (not verified)
Title: Member
similar situation

I had a triple laminectomy/decompression in November '07 which has basically failed because of two re-ruptured discs and scar tissue quickly growing and causing stenosis again. So, yes, my Ortho and I are managing my "chronic, inoperable, intractable pain" in much the same way you are--with medications. The last surgery caused me so much Evil that I am not willing to go through another surgery until science has progressed much further in handling DDD, spondylosis, SI joint disfunction/piriformis disorder, and generalized osteoarthritis of every major joint in my body--including my CMC (thumb) joints. I am a 42 year old mom of a college senior with a husband who has come to understand (begrudingly) that I cannot physically do what I did even a year ago. I just get so tired--after a day at work I just want to go home and crawl in the recliner with some ice--after taking my pain meds--and find "me" again. This is not something I need so badly on Mondays but by Thursdays I'm just trying to "make it" one more day.

O.k. I've whined enough--but I do agree. We are "sentenced" to this life until science progresses much further to where we can be assured of a better than 70/30% success rate (just used that number as an example--it varies, I know).

Sorry so long. You hit a topic that's one of my "favorites." Smile

dmoonchild
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Joined: 06/26/2008 - 9:03pm
Hi Mitzi, Im sorry to hear

Hi Mitzi, Im sorry to hear of your situation, but im glad you are here because we are in the same boat. I have told by 3 surgeons that surgery is not an option for me as there is too much damage on too many levels. When the first surgeaon told me, he was very honest and upfront, told me I would need pain managemnet for my pain for the rest of my life I cried , rather sobbed like a baby. Im glad my husband went with me because I didnt hear a word the Dr said after that. The nurse ran in and just held me. I have a new team of PM drs. One for meds and one for more interventional stuff. I have an injection sheduled for next Wed. He said if that doesnt do it, we will try every other option...probably a spinal stimulator. I have been out of work for 4 months now. losing health insurance Sept 1st. I have 2 beautiful kids, Francis 3 and Lily 2. We are barley making it and COBRA payments are over $1200.00 month. I have applied for SSD and waiting to hear from them. Im so scared and I feel like such a failure, as a Mother, wife and professional woman. Ive been very depressed these last couple of days. I cant do anything, my house is a mess. My husband must have came in on the same bus from Heaven as your husband. I love him dearly and he is very supportive. I have not yet accepted my fate, I know eventually I will have too. Just 5 years ago I was running 5k races and now Its a good day when I can get out of bed. Please know I am here for you if you need to talk and you will be in my prayers as everyone here at SH always is.

J.J.Grey
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Joined: 06/23/2008 - 8:45pm
Exactly the Same

Your words sounded like they came straight from my docs mouth - "I have taken meds, every day for the past 7 years and have been told that unless some sort of advancement in the medical field happens, will be taking these meds for the rest of my life."
That is exactly what my doc has told me. And here I am on opiates waiting for one of those advancements to come along. Good luck to you and please keep us posted on your progress.

j.howie
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Joined: 06/19/2008 - 7:21pm
close to same thing

Hi Mitzy,
To make a long story short I've had back problems most of my life. after several failed surgeries. I choose not to have anymore until technology has a major breakthrough.
I call this the roller coaster of chronic pain. Things can go fairly good for a time then all the sudden I race from the top of the ride to the bottom and then hang on for dear life! And not even know what the heck I did. Well most of the time, I'm pretty hard headed.
I have a ticket to ride, but not one to get off!
Good luck Jim

Click my name to see my Medical history
You get what you get, not what you deserve......I stole that from Susan (rip)
Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!

Mitzi (not verified)
Title: Member
Thanks for the responses.

Sorry, I haven't had an opportunity to get on-line for a couple of days. My ISP had some thech problems and I was just able to get back on-line today.

I know, for me, it's been mostly an issue of acceptance over the last 8 years. I was 38 when the chronic issues began, and I kept thinking to myself that I couldn't believe that this life was "it" for me. I was seeing a diffeent PM in the beginning, and he was such a jerk. The man had no business being in the PM field. Let alone the medical field. He looked at me one day and said "Well, you are almost forty you know." I couldn't believe he said that!

I know from participating in other forums that "acceptance" can be a dirty word to some people. I guess I don't look at iit as giving up. I just see it as a way to cope and move forward. I've watched a lot of people who refuse to accept a diagnosis of chronic pain, sabotage their own pain management. It's hard to see people that you've come to care about, go through hell just because they don't want to "give in".

Like most people, if I had a choice, I'd be med free and pain free, but that's just not going to happen. Why put myself, and especially my family, through all of the torture of not being properly medicated or managed?

Sorry for the ramble. I guess I had a bit bottled up! LOL
Thanks Paul. I'll take a look at that link. I so appreciate the warm welcome.

Take care everyone. Hope to be participating more often. Blessings and Peace, Mitzi

clarencediggs
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Joined: 07/17/2008 - 10:47pm
Hey Mitzi! Just now starting

Hey Mitzi!
Just now starting to admit I'll probably need pain meds for quite a while. I'm 9 months post op from a L4-S1 fusion. All the sciatic pain I had before surgery has returned these last four or five months. The second best thing I've found (next to prayer) is Fentanyl. I've been on 25mcg/hr patch the last month. It, along with 400mg/day of Lyrica keep me sane.
So if your doc suggests Fentanyl, you say "yes", and "thank you."
I've filed for SSD, but hope to return to work by the end of Sept.

Take care
CD

haglandc (not verified)
Title: Member
Unpopular take on this

Well I guess I'm one of those that you categorize as feeling that acceptance is a dirty word.

Acceptance is fine as long as it's not a mask for giving in or giving up!!!

I have seen too many good people throw their lives away because someone told them they needed to accept the fact that they would always suffer horrible chronic pain. That there was nothing more that could be done for them, so they may as well get used to the idea that they will need drugs the rest of their lives.

So what did they do ... they gave up. They gave up hope of ever enjoying life. They gave up on themselves. They gave in to the ideas and thoughts of a few, just because they were good doc's or other's who suffer the same or similar things. So they set about becoming someone who will never have a real life. If someone approaches them and says "it doesn't have to be this way". Well guess what, instead of thinking "hmm... maybe their is something I can do". They set about doing their darndest to prove to that person how "really dorked they are and how no kidding they are dorked forever."

If I had given in to that when I first started into a life of chronic pain, I'd be a mess. I won't say in what regards, because I know that would really ruffle some feathers more than this probably already is.

Do I have chronic pain? Oh that's an understatement. Do I take meds every day? Yes I do. Do I hope that some day they'll be able to fix me? Who wouldn't!

BUT

I go on every day doing what I can to dig myself out of that! I refuse to give in! Attitude goes a long way towards fighting pain.

If I meet someone, whether it be a stranger or a friend, I go about the time together as if I have no issues. I don't bring it up, and I do what I can to hide it. There's a lot of people who have no clue what I feel like or go through every single day. All because I choose to focus my energy on living life and helping others to live life.

Some say "oh you shouldn't hide your pain". Why? So you can suddenly act differently towards me and keep me from challenging myself to make it through the day as a normal person?

There are so many weapons that we have in fighting pain. We are our own biggest weapon and the last thing we need to do is put that on the shelf.

-Eat right
-Exercise (even if it's just walking or isometrics)
-Hydrate
-Get away from the dregs of chronic pain mentality
-Choose to live

Stay away from the Hee Haw "gloom ... dispair ... & agony on me ... deep dark depression ... excesive misery ..."

I'm really sorry if I make anyone angry with this, not my intent. I just want to make sure that no one forgets that there's always a different perspective, and it's not necessarily wrong just because it conflicts with another.

Mitzi, welcome to Spine Health.

"C"

dilauro
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Joined: 06/16/2008 - 9:41pm
Never Give up

"C" thanks for your post. I can't tell you how many times words like yours can be used on this site and many other sites. Most of the members that come here are either new to chronic pain or have been dealing with chronic pain for a while. Surgery or multiple surgeries is also probably he profile for many here. Dealing with chronic pain is far from any picnic, but we do have to try to control what it does to us. Its probably very easy to throw in the towel and just let them sedate us so we do not suffer all that much.
What kind of life would that really big. I am a firm believer in fighting, fighting for whatever you want and dont give up..
And when things look like they are not progressing, then fight some more.
I do not have an answer or set of activities that could work magic for anyone. "C" pointed out some valid and time true methods. My post here is more of an attitude. It is really amazing to see what any person can accomplish once they put their mind to it and never say NO.

Ron DiLauro Spine-Health System Moderator
Dont laugh at me

Robin
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Joined: 08/17/2008 - 9:45pm
Mitzi

Hello Mitzi,I've been in chronic pain for many years,but this DDD is new to me.As of Nov.06.
As far as acceptance-I've learned long ago to listen to what my body tells me.I do what I can,but when my body says enough,I listen,because I'm well aware of the consequences.

I am being treated with lortab,lidicain patches,and numererous other medications for pain relief.Probably for years,I don't know,maybe forever?

Learning to accept what we can do and what is simply not smart to do anymore is a sign of wisdom,it does not mean giving up or giving in-just as you said Mitzi-it is moving forward.Life is full of changes,maybe some better change will come along in our future.

jewels (not verified)
Title: Member
So much like me!

I can't believe how similar we are! The differences are the fact that I never got to have children, (because of this) and I don't have a great team of doctors, I don't even have one good doctor. But as for the rest, I so get you!

I wanted to help you with the SSD if I can. Have you hired an attorney for this or are you trying to get it on your own? If you are on your own and are turned down, get a lawyer fast! Believe me, you will continue to be turned down every time. I was turned down 3 times and then finally got an attorney. In the meantime we were hurt very badly financially. They are only allwoed a certain percentage and it will come out of your backpay from SSD. Nothing out of your own pocket up front. As soon as I got my attorney, I was approved for SSD. I wish that I had done it sooner.

We also have to pay Cobra, since my husband carries insurance through his job for only about 6 months out of the year. Back when I was able to work I carried our insurance year round. It cost's us $800.00 per month. That's not chicken feed! I have Medicare but because of our income I don't qualify for a prescription drug program and also my deductibles are extremely high. It's certainly better than nothing if I didn't have personal health coverage but we would rather pay the $800., we're better off that way. Plus, my husband needs insurance also.

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