My life: Unrelenting Pain and Fear

Everyone in chronic pain can relate to the part about "unrelenting Pain", no matter what is causing it. The same thing day in and day out. It doesn't stop for birthdays or any other day for that matter. Some of us are in pain as a result of a fall, a auto accident or some disease like fibrormyalagia. It really doesn't matter, its all pain. Its hard to believe that a country as advanced as the USA Can have 78 million people that live this way but its true. the Suicide rate is 4-5 times higher than other people and lets face it, there is probably not a single one of us that haven't thought of taking our lives at on time or the other. I certainly have.

Every day I read about some new pain drug coming on the market to fight pain. I ask myself why, because you can't find a doctor to prescribe it to you. What is going on in this country right now with the way chronic pain people are treated is a damn disgrace. I have someone that is helping me now but as always its not enough but it does help. He is my primary care physician.

FEAR the other word I talked about is something we all live with. Fear of what you may ask? Fear that if you have not found a pain doctor, that you never will find one. The other side of it is you have looked and looked and finally found someone to help you, but what would you do if something happened to the doctor you now have, or if he told you he didn't want to help you any more. I live in fear of my doctor saying he is going to stop helping me. I have no idea where I would turn. It took me a year of practically begging but then one day I asked my wife if she would go with me. My wife talked to him for quiet a while and that was the key. He agreed to help me. (That is a tip by the way). Another, tip is always go well dressed and have your spouse do the same. My wife always goes with me on every visit.

I still live in fear and dread every time I have to call for a refill. Such is the life of the chronic pain person

The Stigma of the uneducated Medical Profession.

This post #3 of 3. For those of you who want to read it, Please drop down to post #1 and read up. I have lived for 26 years now with Chronic Pain in my lower back and nerve damage due to a new procedure and an inexperienced Surgeon. I am sure that some of you may be asking why in, the hell I am writing about an abdominal surgery.

1. Opiods can in fact cause abdominal problems because one of the side effects of most of them is constipation which can lead to blockage in the small intestine.

2. Because of the stigma associated with people in Chronic Pain, you can be mis-diagnosed by many idiot surgeons who think they are "little gods". Not all Surgeons are that way but many are. If you take any kind of pain medication for chronic pain, you are a drug addict. That's just the way it is and I DON'T HAVE ANY HOPE OF IT CHANGING ANY TIME SOON.

2. next thing that will happen is you will be treated and talked to like a dog.


I still find it hard to believe that you actually pay someone to treat you like I was treated. I had planned to wait until the next day to go back to the hospital day, but it was a good thing that I didn't. I had a high fever and my kidneys were failing. They had to put me on an IV. for 3 days to get my kidneys functioning again. As said before 2 of the 3 doctors refused to operate on me because they said I was a DRUG ADDICT and that was what was causing my problem.
One of the doctors even yelled at me in front of about 10 nurses that I was nothing but a "damn drug addict". When she left 2 of the nurses were very angry and asked me if I wanted to speak to the Patient advocate in the hospital. When I told her what had happened she covered her face with her hands. That doctor regrets what she said, because she had to go before the vice-president of the hospital and apologize to me.

The one Doctor who was so nice to me said that taking opiods had nothing to do with my problem. He did say since nothing showed up on the test he would have to go in and do exploratory surgery. He said he would have to pull every bit of the small intestine out and inspect it an it was a risky surgery. He told me the small intestine was approximately 23 feet long. I couldn't believe it.

I agreed and the next morning I was in surgery. What he found surprised even him. A large ulcer just like the kind you have on your lip had some how gotten down into the intestine had grown for a while leaving a growth inside the intestine blocking it to smaller than a pencil. He took a photo of the section he cut out. I will forever be grateful for this one mans experience and compassion.

It has been a painful 2 months on top of my chronic back pain but I have recovered from that.

Now why did a man with debilating back pain write about this surgery.

Because there is even more of a stigma against chronic pain people than even I ever dreamed after 26 years. Sooner or later you are going to find yourself in this situation. If you are on strong pain medication, you will be treated like dirt and I mean by the doctors. Don't hesitate to ask for a second opinion. Don't be afraid to ask to talk to the patient advocate. Every hospital has one and that is what they are paid to do. I hope this helps someone.

4 trips to the Emergency room in one month

POST # 2 OF 3.
I decided to break this down into 3 posts because to tell the whole story would be to long, and I couldn't sit here that long. Everything I am writing is true and happened to me just 6 weeks ago. In order to under to understand the whole story, please drop down and read post #1 first.

One Sunday in September. I started getting sick at my stomach and as the day wore on it got worse. Finally I was so nauseous that I did what we all have done at some time in our life. I walked in the bathroom, stuck my finger in my mouth and started vomiting. I wasn't prepared for what happened next. The first couple of times it was the contents of my stomach. But after that I couldn't figure what was going on except I knew that I was very sick. Then it dawned on me, I was throwing up my own BODY WASTE OR BILE.

My wife rushed me to the emergency room of the largest room in Pensacola, Florida where we live. We sat in the emergency room for 7 hours waiting for a bed to come available. Finally we got to see a Doctor in the emergency room. I was trying to drink all of the water that I could because I was becoming dehydrated fast. The Doctor said I had a blockage in my small intestine, so the started running tests. The best test they have for this is drinking a big jug of contrast material, and have a CT scan. I kept at he contrast in my stomach just long enough for them to get a couple of pictures before I threw that up also. After what seemed an eternity the doctor came back in and said that nothing showed up on the scan to indicate a blockage, that it had probably worked its self free. The Son-of-a-bitch said they needed the bed for other patients and discharged me. My wife and I could not believe our ears. By stomach was starting to swell and I was in a lot of pain. After a very heated exchange I signed the papers and left.

All day the next day was a living hell for me. By this time You could place your hand on by abdomen and feel the intestines Turing and twisting in my stomach.

That afternoon I was back at the emergency room for the same thing. This time I saw a different doctor and after seeing the shape I was in and reviewing my chart he said you need to be in the hospital, so he had me transferred. The next day they were doing more of the same type tests they had done in the emergency room and came up with the same conclusion. After staying in the hospital and taking tests for a week, they discharged me and told me to try it for a few days. The same damn identical thing happened. There were 3 specialists working with me. The chief of surgery was a very nice and compassionate man. He told me that since nothing showed up on the test he needed to go in and do exploratory surgery and take all of the small intestine out, which by the way is 23 feet long, and inspect every bit of it.

The other 2 doctors thought they were little gods and were cruel as hell. By this time they had looked over my medical records and they had the answer, they thought.
Because of the narcotics I was taking (their words) It was putting my bowels to sleep. Bullshit I said, I don't have any problem going to the bath room I told them.

I ran both of them out of my room after one of the called me a drug addict. The next day the nice doctor who was Chief of Surgery told me that if I wanted him to go in and do the exploratory surgery that he would. He said if I wanted to go home for a few days and think about I could. I agreed but I should have stayed in the hospital then and let him do it, because it almost cost me my life.

My recent month of hell in the hospital

#1 of 3 Articles on this subject Start here and read up Please.


As you can tell from my last entry it has been quiet a while since my last post and to be honest with you, I wasn't sure I ever would. I am doing this because what I have to say is important, especially to those of you who suffer from chronic pain as I do. I get so angry when I start writing about it, it is hard to keep going. but I promised myself that I would make this post if it took me a week.

For those of you like myself who have suffered from chronic pain, especially any length of time, also suffer from depression. Of course this comes under the heading of MENTAL ILLNESS. TO THE UNEDUCATED, THIS IS IS A SCARY WORD. I knew the stigma that used to be attached to mental illness, but since my focus has been on the spine which is my problem, I had paid very little attention to mental illness in the last few years. I have a great phyciatrist that I have been
seeing for 15 years. I have panic attacks also even though I don't have any phobias. He has me on xanax and paxil. I see him every 3 months he writes my prescriptions and I leave his office. No big deal, Right. !!! WRONG!!!!!!

Because of trying to deal and live with my spinal problems, I had never given much thought to mental illness and the digestive system. Some of the things that I have to say are going to be a little unpleasant to read but they are important because I just finished going through every bit of it to.

In mid-September I started having severe burning in my lower abdomen and I noticed that it was starting to swell. Next came the worst nausea I have ever experienced. I finally became so sick I walked into the bathroom, got over the commode an stuck my finger in my mouth, thats all I had to do. I wasn't prepared for what happened next.

While opiates are the answer to prayer for so many of us, there is one thing that people who take them like me should be keenly aware of and that is what they will do to your digestive system. Yes I am talking about constipation. I just finished a month of hell in the hospital and have a 14 inch scar down the center of my abdomen. As I was vomiting I wasn't ready for what I saw next. I was throwing up my own body waste or bile. I was in and out of the hospital 4 times in a period of 5 weeks. I was not prepared for what I had to go through in the hospital, but more than that I wasn't prepared for the way I was treated by the Doctors and some of the nurses.

I will get into it more in my next post.

Living in hell-but you are still on earth!!

I am at the point now, when I start a post I usually go through a series of emotions. Who in the hell wants to read about PAIN? Sometimes when I try to write, I become angry when I look back at my life, I think back to the day of my accident. Sometimes I just sit and look a my computer screen. Finally I turn it off, lay my head down and cry. It is becoming increasing harder to write about pain when you are suffering so much. I don't know what drives me anymore.

I don't seem to ever be satisfied with what I have written about Chronic Pain. Often I will see a story on T.V., but its always about the addict and those terrible narcotics. I watched a story on Fox news a couple of days ago. It was about school kids and and the majority of kids said they gained access to their parents prescription drugs. Something is wrong with this story. Where in the hell did their parents get so many opioid and opiate type drugs, that they could just leave them lying around in their medicine cabinets.

When I hear unsubstantiated stories like this from the news media, I go into a rage.
They don't know or understand because for whatever reason this is the position of all of the news media. As for as that goes the general public have the same attitude.
If you take any of the powerful drugs, you are a drug addict. That is simply not true. Unfortunately, it has to strike close to home or to the person themselves before they really understand what a pain epidemic we have in this country. It takes only a split second to go from a happy active person to a vegatible that relies on this powerful pain medication to sustain life.

There is not a day of my life that I don't feel like taking my 40 Cal. automatic pistol that is loaded with hollow point rounds and sticking it in my mouth. The only thing that has stopped me is my faith in Christ, the love of my family and last I really don't want to die. Everyone has a breaking where they can't stand it any more. The suicide rate in this country is 5 times higher for people in chronic pain versus people who are not. So Please, to all of the politicians, DEA, and doctors out there. There are over 75 million of us are suffering this agonizing pain 24 hours a day, 7 days a week. All we want is a life, not to sit around getting adicted to drugs. We are citizens of this great country also and should be afforded the same right to life in peace as everyone else.

More on the abuse of the Spinal Cord and Epidurals.

I would like to go a little further on procedures like the Epidural shot and the potential dangers that could come from it. I personally will never have another Epidural shot or test involving a needle inserted into my spine. While I am not a Doctor, my years of procedures and surgeries, sitting up late at night has given me a great deal of knowledge on pain, because I live with it day and night. One thing I have learned the hard way is just because the FDA approves something, does not mean it will help you with your problems. They are a panel of 5 Doctors and they are under a lot of pressure from congress, sometimes just one congressman to approve whatever product or medicine is involved. For example if the company that is going to be making the product falls in a certain congressional district this is where the lobbying kicks in.

You have heard me talk about Dr. Charles V. Burton, Neurosurgeon. I really hope you go this article on his site and read it in its entirety. All surgeons would do well to read his information.

"This illustration (from Noback CR: The Human Nervous System, McGraw-Hill, Inc., 1967) illustrates the human subarachnoid space surrounding the brain and spinal cord. 60% of spinal fluid is produced within the brain and 40% from the spinal subarachnoid space. It flows, as shown, and is absorbed by the venous arachnoid granulations. This spinal fluid is produced at the rate of 0.35cc/min, or 500-750cc/day. Turnover rate is 3-5 times/day. A normal adult has a ventricular volume of about 30cc and about 100+cc in the surrounding subarachnoid space. The subarachnoid space serves to be a hydraulic cushion for the floating brain, a source of nutrition as well neurotransmitters. This space is the most fragile and sensitive environment in the body.


When the subarachnoid space is subject to insult or inflammatory change damage and scarring occur. One of the primary difficulties in addressing the subject of neuropathologic change, particularly that of adhesive arachnoiditis is the great amount of confusion regarding nomenclature. Adhesive arachnoiditis is an advanced form of arachnoiditis and is most often confused with the latter. Some of the other terms by adhesive arachnoiditis has been referred to have been:

Serosa Circumscripta Spinalis
Intraspinal Granulomatosis
Obliterative Arachnoiditis
Chronic Arachnoiditis
Spinal Meningitis
Chronic Spinal Meningitis
Chemical Meningitis
Sterile Meningitis
Granulomatous Meningitis



Once one has gotten beyond the "Tower of Babel" part of the semantic issues it is important to look closer at the normal anatomy of the lumbar spinal column, the dural membranes, and the subarachnoid space. In the image, to the left, the nerve rootlets of the cauda equina, which are in motor and sensory pairs, are shown as single nerves for simplification. If a lumbar puncture were to be performed the needle would simply push the nerve roots, floating in cerebrospinal fluid, out of the way. If a similar procedure were attempted in a patient with Class III Adhesive Arachnoiditis, where the nerve roots were fixed to each other and to the dura mater, the needle could easily injure or sever the nerves."

Please go to http://www.burtonreport.com/InfSpine/AdhesArachAnatomy.htm

Information on the Epidural shot

So just what is an Epidural shot. There is a group of Doctors who have carved out a nice "little niche" for themselves called Pain Management Specialists. What they do primarily, is inject steroids and other pain medicine into the epidural which is the outer layer of the spinal cord depicted in green in the photo to the left. Most of them like to do a series of 3 shots to the tune of about $2,000-$2,500 dollars. If this procedure gives any relief at all, it is for about 2 weeks. Most of these doctors are anesthesiologists and while a few of them will work with you with powerful pain medications, the majority send you back to your primary care physician for him to prescribe them to you. I know because I have been through it. The ones that only want to do the epidural shots are called "procedure mills".

They use the excuse that you might become addicted. First of all, they don't even have their terminology right. The correct word is "chemical dependency" which is a normal occurrence with opiates. If someone wants to continue taking these drugs after they no longer need them, or just try to get them for the so-called high, then they are addicts. Surveys have indicated that only 1% to 3% of chronic pain patients ever get addicted. To get off of these drugs, all you do is slowly reduce your dosage until you are off of them. I have done it 15 to 20 times myself. It is a hell of a lot easier to get off of opiates than getting off of nicotine. I can also say that from personal experience.

The epidural marked in green, looking down on a disc showing the spinal cord in the center where the blue dot is and the green is the epidural or the outer wall of the spinal cord. The other clusters are nerves that come out of the spinal cord and go to places all over your body. You will understand better if you read what Dr Burton has to say. Then go to his website to read the entire article. If you want to learn now is the time, especially if you have back problems like I do.
According to him the spinal cord is the most fragile, yet the most abused part of the human body.

http://www.burtonreport.com/InfSpine/EpiduralSteroidAnatomy.htm with the permission Of Dr. Charles V. Burton, a board certified neurosurgeon, who is the top spine surgeon in the USA. If you have any kind of spinal problems you need to go to his site, http://www.burtonreport.com/ .

"The epidural space is an anatomic structure that surrounds the dura mater within the spinal canal and extends to the brain itself. In some areas it is a real space and in others only a potential space. The space itself consists of fat and blood vessels. Its importance is based on the fact that many physicians have selected this site as a depository for injected medications as a treatment for low back pain.

The illustration to the left represents a post-mortem axial section of a normal lumbar spinal canal. The vertebral body is shown at the top and the lamina of the vertebrae at the bottom. The epidural space surrounds the dural membrane. Only the posterior portion of the epidural space is outlined in green as this is the area of clinical interest.

The blue dot has been inserted intracathecally, that is, within the subarachnoid space. The subarachnoid space is one of the most fragile, delicate and sensitive areas of the human body. This space contains the brain, spinal cord and nerve roots of the cauda equina. It is filled with cerebro-spinal fluid which acts to support and nourish the nervous system. The subarachnoid space is very sensitive to insult while the epidural space is very resistant to insult. Unfortunately they are separated by only a thin membrane, the dura mater lined by an even thinner membrane, the arachnoid membrane.

In this diagram the site of the epidural space is highlighted with a green dot (which lies on the dura). In this representation the dura and the underlying arachnoid membrane are both shown. Note that the epidural space is separated from the subarachnoid space by only these thin membranes. When a needle is used to deposit substances, such as steroids, in the epidural space the procedurist (physician performing the injection) has the responsibility of accurately placing the material in the epidural space because only a slight inaccuracy permits the steroid entry into the subarachnoid space thus introducing the risk of adhesive arachnoiditis ".

Go to Dr. Burtons website to see the rest of his article.

Politics and Pain

It has been a while since I posted, so I am going to start tonight, even though I am in so much pain I can hardly sit in my computer chair. My body is telling me to give up, that I am doing no good, then I will get a nice comment or e-mail and it then it gives me the courage to go on. There so many people just like me, either lying in bed with out the strength or courage to get up, while others are sitting in pain and and loneliness, staring at life passing them by, remembering plans and dreams they had for life or retirement. We aren't talking about a few thousand people, we are talking about 75 million people.

It is absolutely insane, what is going on in this and other Countries regarding Chronic Pain. In our country, the source for it is in the little photo to the left. They could also come together as it is non-partisan and do something to correct it.

Its that time again and I'm sure like me, you are tired of all of the phony promises. I don't know where they have been for the last 4 years, but it sure as "hell" hasn't been working for solutions for people living this ghastly life of Chronic pain. I can only speak for myself, but when it comes to trying to describe Chronic pain, I have no words to describe it to the point that I feel I have gotten my point across. When you have 75 million people suffering like I am, you have an epidemic on your hands. Even many of our wonderful military men and women who come home after being blown to hell by IED's or other ways are having the same problems, getting the powerful medication that it takes to knock out their pain.

This medicine is not illegal folks. It was approved by the FDA just for this purpose, yet all you hear is addiction, addiction. There no studies that I know of that shows a high level of addiction with people who live in chronic pain. I have researched this mess for to long. Most studies I have seen, have been around 2 to 3%, and for 75 million people that is nothing. Most people in chronic pain who are lucky enough to get someone to help them, hate taking the damn stuff because of the side effects. We are not lucking for a high, we are looking for a life. Most of the time we not only have to suffer from the pain, but we suffer the humiliation by a Dr. yelling at you about getting addicted. Most of them don't have enough education on it to know the correct words to use.

Its Chemical Dependency Doctor!!!! To be fair, all Doctors are not this way. We have many wonderful physicians who are educated and compassionate. They are just caught between a "rock and a hard place" with the justice dept. The Senators and Congressmen could put a stop to this insanity by putting control of the medical profession back where it is supposed to be, with the state medical boards. Then the DEA could get back to the job of stopping this massive amount of illegal drugs coming across the Mexican border. Yes there is an illegal drug problem in this country and I am all for going after them, but please not the doctors, and pain patients who can hardly make it through the day.

These politicians want your vote, so please do what I have done and continue to do. Write them, Call their offices. Its obvious from polling data that this country is fed up with politicians who forget who they represent. People are angry and their patience has grown thin, so no matter what state you live in, please jump in let them know that pain is a human issue, not a partisan issue.