About the Author
For nearly the entire length of my life, I have suffered with some type of chronic pain. Pain entered my life, apparently to stay at the tender age of 13. Approaching female maturity was not the profound experience about which I had dreamed. The day before my first menstruation, I lay in the floor doubled over in abdominal pain, which I would later suffer miserably on a monthly basis. Not until a complete hysterectomy at the age of 29, did I become free of that particular pain, however, I would soon learn that my 'ole buddy' PAIN had not disappeared entirely.
Let me interject, however, that my own family had a difficult time believing that I could be in that much pain. My father, after some research, presumed that female pain was the result of improper diet and not enough exercise. Bah, humbug! The family doctor could not do much at the time due to my age, so I suffered in silence for many years with dysmenorrhea and endometriosis. These two female conditions cause such horrible pain that it is unfathomable by the male population. No one can possibly understand how much some women suffer every month. By the time, I reached 20 the family doctor began prescribing Phenephen #3, a fairly safe and effective opiod with a short half life. I took this medicine for nearly 10 years and never once did I suffer from any problem with addiction or tolerance.
While still a child between the ages of 10-11, I had an accident when my bicycle hit a parked car landing me underneath one of the front fenders. The perineal area changed every color under the rainbow but eventually the bruising healed and the soreness subsided. It was not until I took my first office position in 1980 that signs of trouble began to appear. In the afternoons, I began to notice soreness in the perineal area and the back of my thighs. Both areas were sensitive to touch as though whipped with a belt. I had no idea what could be wrong and the idea of a nerve disorder never crossed my mind.
I finally went to our family doctor who proceeded to diagnose Neuritis. Since I was in group medical insurance, I knew his diagnosis related to the kidneys, but I did not question the doctor's authority. Nevertheless, my condition never improved – only became worse with time. What began as a slight irritation and more of a nuisance erupted into a full blown condition, that would eventually disable me and restrict my life with an extraordinary impact.
Pudendal Neuralgia 'with entrapment' is the result from a compressed place on the nerve, usually in the lower central pelvic area. It can occur at any of the various places on the nerve. Nerve entrapment occurs when a nerve constricts, for some reason, and responds by inflammation, scarring, or thickening. All these symptoms cause the nerve diameter to increase and the nerve to misbehave. Some of the words used by PNE sufferers to describe their pain are stinging, burning, stabbing, aching, knife-like, irritation, cramping, spasm, tightness, crawling of the skin, twisting, pins and needles, numbness and hyper-sensitivity. The pain is piercing and may feel shallow or deep. It often begins in one place and then radiates outward.
Dr. Robert of
PNE sufferers also have to contend with the overwhelming dilemma of having a chronic disease, but appearing to the entire world as if perfectly "ok", which results in most patients being misdiagnosed by their doctors, just as I was over 25 years ago. Right now doctors still judge the legitimacy of an illness on the basis of its visibility. To the great unfortunate circumstance of PNE sufferers, the disorder is deep within the body, unseen on the outside.
I finally left the group medical insurance industry and obtained several jobs I could do whilst standing. Eventually, I went back to office work, but not without problems. The first day I returned to an office environment, the same physical problems returned, as before. I know that I tried, in vain, to ignore the problem hoping that it would disappear. However, the pain became so intense that I had no alternative but to seek help. It was not until several years later, that I finally sought the advice of a pain management specialist.
Unbelievably, Autrey Parker, M.D. of St. Francis Hospital in
After the second visit with Dr. Parker, I realized that he was unwilling to assist further with the type of treatment I desired and, furthermore, could afford. He refused to address opiod pain medication and ‘brushed me off’ as if invisible and not even in the room. Needless to say, I was perplexed and angry. Why would this doctor ignore my pleas for help in controlling the pain with a condition as debilitating as mine.
The main reason I sought Dr. Parker’s help was due to insurance changes at my company. I had been seeing another general pain physician whom diagnosed “Unknown Origin of Chronic Pain.” She was prescribing fentanyl patches and eventually had to change over to the narcotic pain medication Methadone, as I had built up a tolerance to fentanyl.
I was oblivious of the fact that there was a "War on Pain" in this country or that I would eventually face a horrendous battle that nearly destroyed my life.
For six years my general pain physician, Dr. Christine Kasser of
Not being able to care for myself on an independent basis forced me to move-in with my elderly mother. Without her assistance, I would be on the streets or in a shelter today. Because of what this former pain doctor of six years subjected me emotionally to, and the affect of the Drug Enforcement Administration to subvert obtaining legal pain medication, the entire ordeal has sent me to hell and back.
I eventually contacted a new pain management clinic in
This, Dr. Frank Jordan, of the West Tennessee Pain Management Clinic treated me as if I was nothing more than a common street junkie looking for a "fix". His attitude was, “I don't want to hear your complaints and I certainly will not prescribe opiod medication for pain." I informed him of the diagnosis from previous physicians in
Now, without a proper physician to prescribe the pain medication required to function immediately endangered my life and the ability to work. It took 10 days to spiral down into methadone withdrawals. I felt as though a ton of bricks had toppled down on me. The returning intractable pain, depression and lethargy were horribly debilitating, therefore, I had to resign from the job I just acquired. Unfortunately, I hadn’t been with the company long enough to request a leave of absence. I was devastated because, once more, the ability to be self-sufficient was gone.
The pain that had once been a nuisance returned with a vengeance derailing my sanity. For over two months, I lived in incessant pain 24/7. There was no surmountable way to sit, stand or lie without hurting. I drowned myself in tears and whaling cries for hours at times. The never-ending pain was slowly eroding my emotional foundation and I prayed for death to gain relief from the suffering. The stress of the ordeal was so horrendous that my hair began to fall out.
With the last bit of determination I could muster, I explored websites and wrote to people all over the internet asking for help. I eventually found N.A.M.A., the National Association for Methadone Advocacy. Tony Scro eventually responded to my pleas for help and referred me to Dr. Russ Portenoy of
During that time, I slipped into suicidal depression. It was October 1, 2004. On that day, I decided that I had been in pain long enough, it was not going to abate and I had no purpose or the desire to keep living. I was profoundly and utterly depressed. That afternoon I stuffed the garage with plastic bags to plug up the holes and started my car. I had swallowed about 30 or more Librax pills, then stabbed myself in two places hoping that with the combination of carbon monoxide and bloodletting I would slip quietly into death. It was not to be.
After several hours, the blood from the stab wounds coagulated, and there was not enough carbon monoxide in the garage to even induce substantial drowsiness. (It doesn't work the same way as in the movies, folks!) I also had a ligament jutting out of my left arm that needed attending so I called 911 and turned myself into the authorities. I will never forget the kind police officer who stood beside the gurney in the hospital asking me why I would do this to myself. At that moment I realized I was not in pain, (ingesting the Librax, obviously, was enough to stop it for awhile) but I was still very agitated.
Between the shock and the medication I had taken, I was numb inside. That was the first time in two months I had not felt pain. Peace was upon me, at last. The trauma physician at the hospital knew that I was in pain. When I professed that I would leave the hospital and throw myself literally in front of a Mack truck he decided to re-administer the methadone back into my system.
I stayed in hospital for three days recovering from the failed suicide attempt, then I was handed over to the state psychiatric facility. That experience proved to be the most embarrassing and humiliating of my life. A squad car awaited my arrival once taken from the hospital room in a wheel-chair. The officer proceeded to handcuff me and shackle my ankles. At first, I was relatively calm, but on the way to the “nut” house, I began to sob uncontrollably. How could they treat me in this manner due to horrific pain? This was inhumane treatment and uncalled for entirely. I felt like nothing more than a common criminal did.
When we arrived at the state mental facility, they removed the shackles and took me to the wing where I would stay. They stabilized me with anti-depressants, but methadone was not available. Only a mild pain reliever that had little to no effect was on hand. Thankfully, there was enough methadone in my system keeping me relatively pain-free until released.
When mother arrived to take me home three days later, I was so relieved. By the time, we got home better news waited me. Tony Scro from N.A.M.A. and Dr. Russ Portenoy had been in contact with Dr. Daniel Brookoff at the Methodist Pain Institute in
My first appointment with Dr. Brookoff, he spent a record six hours interviewing me. He wanted to know everything, how my pain began, what doctors and specialists had I seen over the years, and every medication prescribed. The time he accorded me and his warmth, sincerity and compassion was more than refreshing - it was a revelation! Never had I known a doctor to be so completely thorough and genuinely caring.
I might add that Dr. Brookoff is an advocate of methadone for chronic intractable (uncontrollable) pain. The drug has a long half-life, sometimes more than 24 hours, and it is relatively safe. It does not damage tissues and organs like many drugs for pain commonly prescribed today.
However, methadone should not be taken lightly. From what I know about the drug, only after exhausting all other narcotic options should a doctor prescribe the medication. In my particular situation, doctors had already prescribed every kind of narcotic available, except for the strong ones, like Dilaudid. Invariably, I developed a tolerance to most mild or low dose narcotics. They are incapable of easing my present pain level. I take a very low dose of methadone, usually no more than 10mg. per day.
I finally had to acquiesce to a disabled status due to the progression of my neurological disorder and filed for disability late in 2004. Unfortunately, SSI denied benefits. I have worked and suffered with this condition my entire adult life and today can no longer keep up the pretense that I am ok, because I am not, really. I have some good days, but mostly rough uncomfortable days, due now, to break-through pain.
Regretfully, I learned that Dr. Brookoff resigned from the Methodist Pain Institute earlier this year; then the institute closed from, yet, an undisclosed reason. Pain physicians and pain clinics all over the country are closing their doors due to various reasons, which is depressing news for those in need of their services. There are approximately 4,000 physicians in the country willing to prescribe a CL II narcotic; I have little hope in locating a doctor that will risk license and reputation in order to treat my condition. Nevertheless, today I have a few connections and because of their great generosity in the past, I have hope that they will again come to my aid.
This is my story living with chronic "intractable" pain. If you would like to share your pain story or experience with this website, please provide a brief synopsis in the guestbook. Eventually, I plan to set up a journal for visitors to share their experiences.
Debra~Normand
Update: November 2006
I lost the battle to control my pain in the medical community earlier this year. The circumstances were unfortunate, however, the experience has shed new light on the various aspects regarding the use of opiates over a long period.
But first, some background information on how it happened...
Daniel Brookoff, M.D. had been treating my pain condition for several months between late 2004 and early 2005. Around the middle of 2005, the pain clinic where he was affiliated indicated that they would be closing their doors and patients would need to look elsewhere for treatment. Just having found Dr. Brookoff, I was skeptical of seeing, yet again, another new doctor, that may or may not, take me seriously. My last visit with him he provided three prescriptions for methadone. The supply lasted nearly a year.
I had to then make the decision to seek further treatment or attempt to withdraw from the medication, once again. Although I was determined not to suffer the agony that I previously experienced. Mainly due to the degradation suffered from previous, so called, pain management physicians, and the increasing debilitating effects from the medication, I decided to take the latter decision and withdraw completely.
So, I went searching the internet for a solution to naturally withdraw from the drug without being admitted to a medical facility.
Fortune was apparently on my side, when I discovered a physician in Mesa, Ar. that had published his naturopathic guidelines for methadone and other opiod withdrawal on the internet. I printed the article, then proceeded to contact Dr. David Arneson, NMD., director of The River Source, Substance Abuse - Detox and Treatment facility. He promptly responded and assured me that through his program a home detox was possible and more than likely, be successful.
Today, I can happily report that Dr. Arneson's detox program, based on additional nutritional supplements and mega-vitamins was a complete success. It's now been eight months since I began his program and I've suffered no adverse effects.
Unfortunately, though, my pain returned as I knew it would. But now, I am searching for alternative options to manage with the condition without drugs. Of course, I do not advocate that anyone follow my path unless they so chose.
The truth is, I was forced into the decision based on my socio-economic circumstances. But the flip-side of this adversity has changed my life in dramatic ways, that I never expected.
I will elaborate further in the near future.
If you are interested in learning more about natural opiod/narcotic withdrawal please visit the links to the left of this page.
bravenet.com