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Old 01-22-2006, 12:59 AM   #1
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ladybird988 HB Userladybird988 HB User
chronic pain lessons learned part 2 of 2

Continued..

My family doctor believes I should take no narcotics and will become addicted and told me I will be in pain the rest of my life and there is no hope. I nearly killed myself after I walked out of that visit. I am firing him, but I have to find another doctor first.

I was refered to another pain doctor who is good, but he won't prescribe any meds! You have to have him give his recommendation to your back or family doctor and they prescribe, only mine won't! Is everyone afraid of the DEA? By not giving us pain relief they are torturing us.

I don't want drugs, but need them. I can't take the pain. I don't want a spinal cord stimulator. I am afraid of shots because it was an epidural that i believe caused me to lose use of my leg as it happened 4 days after the shot. My doctors are disagreeing on things and I am wondering why I am just now finding out these very important things, like why have I been tortured with pain killers that they know don't work on a nerve condition?

I have two degenerated disks at L4/L5 and SI, osteoarthritis of the facet joint, and a damaged sciatic nerve. Not nearly as bad as some of you on here. Have had only the microdisectomy for surgery.

the pain doc that said I ought to consider methadone also said cymbalta may help. He is considered the best pain doc in the city. He also said something interesting. that my neurotransmitters are out of wack big time and I need to see a psychiatrist who specializes in neurotransmitters to get the right meds. He said that your emotions, sleep habits, flashbacks (I have post trauma stress disorder) and pain all travel the same neuropathways. People in chronic pain usually have low serotonin. Serotonin shuts the pain gateway in the brain. People in chronic pain have a pain gateway kept open. Deep sleep increases serotonin. I sleep very little due to pain like many of you.

The book says that chronic pain can cause fibromyalgia.

I knew antidepressants that increase serotonin can help with chronic pain, but i did not know why and how and how important it is to shut that pain gateway. He knew about the pain gateway.

He also said that with a damaged nerve, to exercise SLOWLY, go gently, and go longer. Do not push it to exercise at a faster pace as that will only set you back.

Anyways, I am now off to find such a psychiatrist and try to get this squared away.

Is any of this sounding familiar to you?

By the way, the one back doctor I finally saw, at Swedish, who is considered tops, told me to read the book "the Pain cure" by Dharma Sing Khalsa. It explains about the neurotransmitters and serotonin and chronic pain and treatement for chronic back pain and muscle pain.

So...I think the answer to my and a lot of your problems is in that book. it's an eye opener. But finding someone to help me instigate the plans in the book is proving hard. I am hoping the pain program can, but I'm not sure. They do come highly recommended by everyone I've spoken with.

Anyone in chronic pain needs to read this book. You can get it used off ***********. I highly recommend it. But it means supplements, diet changes, exercise, etc. If I cannot find a doctor to work with me on it, I will just do the things on my own.

Basically, finding a doctor who will do supplements and look at anything besides narcotics and surgery has proven hard.

At any rate, has anyone with this level of nerve damage healed? I am nearly giving up. I found out something you newbies ought to know. A person can only withstand a high level of pain for so long (for me it has been 4 years) and then you reach a threshold where your mind begins to go and you get horribly depressed and you get suicidal. You simply reach your limit. Willpower doesn't work. You lose interest in life. then you go for more help and get conflicting info and are so confused you don't know what to do because you've realized by this point that not all treatments are safe, or even effective, the doctors don't know a lot, and you want to DO THE RIGHT THING. that is if you can EVEN GET HELP AT THIS POINT. People with back problems get written off unless they persist in finding answers.

I admit I have been one to not take my pain meds because of fear of narcotics. Now I realize that was stupid and dangerous. Why? The book says high levels of pain over time can cause chronic pain, a medical condition in its own right. so the pain they say has caused me to have more pain, sensitizing my neural pathways. the doctor said it now takes only 1/10th the pain to cause high pain in me. So I take it that had I not let the pain get that bad for so long, I may not be in this condition now. However, I have yet to be given the right meds to keep the pain down. So now I am furious that I now am in this predicament that is basically threatening my very life. And to make it worse, some doctors still believe that narcotics cause addiction in chronic pain patients, which studies have proved that they do not. they cause the body to become dependent, not addicted. There is a difference.

Does anyone else feel like you've learned more about backs and pain than your doctors??

Can anyone else join in here and talk about this? Anyone read that book? Anyone got their neurotransmitters figured out? Found a way to get the pain under control? Would you recommend methadone? A pain program? Cymbalta? going on methadone til you get into a pain program? I don't think I can tough it out another 3 months.

I know some of you will disagree with this information I've found out, and I can understand, as one of the things I've come to see is t hat there is much conflicting info out there. but I feel a spine doctor ought to know more about treating pain, as so many spine patients have level 8-10 pain. Too many of us are being literally tortured and our lives put at stake, and more damage occuring to our muscles and neuropathways by enduring high levels of pain over time.

I'm tired of being told "Your condition isn't life threatening" when it puts us in so much intolerable pain that it really is. If my dog were in this much pain for this long, I would put her down. Anyone would. But we are left to suffer. And why? Due to doctors fear of the DEA? Due to lack of knowledge? Due to antiquated beliefs about addiction to narcotics in chronic pain patients?

I am so angry at this point, that anger is keeping me going. I am bound and determined to crack this and write a D --- book about it! I shudder to think how many people never reached this point, never learned these things, that there IS hope, there ARE treatments, and took their lives due to enduring pain so long. I HOPE I can find something here to help myself and share this and maybe help someone else. I don't know. Maybe like my family doctor said I'm not facing facts and there is no hope.

 
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Old 01-22-2006, 09:26 AM   #2
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davetheplantman HB User
Re: chronic pain lessons learned part 2 of 2

I have a feeling you would get quite a few good and interesting responses in the pain management section of this board if you posted there as well. It is a great place to learn, vent, share, in addition to this great forum. Hope this finds you well. Dave

Last edited by davetheplantman; 01-22-2006 at 09:31 AM.

 
Old 01-22-2006, 10:23 AM   #3
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Join Date: Jul 2004
Location: US
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sandollar HB User
Re: chronic pain lessons learned part 2 of 2

LadyBird,
Long Time no see ,
Reading your post I can really understand why your so upset. Do you remember the Pain Management doc I fired? she would do nothing and thought everyone was after drugs, but I fired her, because after the fusion the pharmacy couldn't read the surgeons handwriting, so they just picked any doc here in town and slapped his name on the label and she accused me of getting drugs from other Doctors, I took THAT doctor and met him at the Pharmacy where they admitted thier mistake and she told me I was welcome to return now. She could of made 1 phone call and fixed the whole thing instead of getting rid of me and then finding out the truth and telling me I could come back. So I fired her.
Anyway. There are Spine Institutes all over, down here, they are called the Florida Spine Institute. They told me they were going to put me on Methodone, and I told them I was flying to Montana to spend close to a month with my son, instead of giving me the Methodone, he said he didn't have time to get it stablized before I left and gave me Fentanyl Patches for the trip and when I returned he was going to begin the Methodone.
However once I returned, him & his PA said they don't remember no such conversation (even though hubby was sitting right there and heard it himself), so they left me on the Fentanyl Patch's and refused to take me off. I am doing really good now and don't need them or want them and have to fight them all the time to stop giving them to me. I actually have 4 or 5 unopened boxes I have to flush now. He is one who can't seem to give ENOUGH pain meds. I had to take myself off of them since he wouldn't help, he just wanted me to take more. WHY? I have no idea!
If you or anyone else really needs someone to help with pain, I would definatly suggest going online and putting in the State you live in followed by the name Spine Institute.
Just be careful, cause the one down here passes it out like candy. Good Luck to you.
StarDust

 
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