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12/17/2008 09:25 AM

Intractable Pain Patient's Handbook for Surviva #2



Now that you know that pain is the enemy, you must make an inventory of physical and mental activities

and events that cause your pain to flare or worsen. Even though you are aware of most of these,

make sure you periodically review your list of pain flares. Every time you discover something new that

causes a flare, write it down. This will help you attack the pain before it rears its ugly head. For starters, turn to the "Inventory of Pain Triggers" at the end of this Handbook and complete it. Share your pain flare triggers with family and advocates. They may be able to help you avoid pain flares. If you have a cat, dog, or other pet, they may actually know when your pain is about to flare. An impending pain flare may provide a subliminal signal to a beloved pet that can tip you off that it is time to take some extra preventive measures. For example, your pet may become more affectionate towards you, as if it knows you are in extreme pain.


Denial, desperation, and misinformation can all lead to poor pain control and continued deterioration.

The worst propaganda being pushed upon all chronic pain patients, including those with and without IP

are the elusive "magic bullet" formulas being advanced by the pharmaceutical and medical device industries, unethical practitioners, and some health plans and government agencies. Just look at the ubiquitous advertisements for pain treatment. They almost all try to sell you on the magic bullet, "one way" method to treat your pain. For example, recall all the many pitches you have heard, for such singular "cures" as acupuncture, stimulators, nerve blocks, lasers, medications, and psychotherapy to name a few. The worst deception these days is the fraudulent pitch that pain can be cured by stopping all medications. As if the control is the cause!!

IP patients must continually remind themselves that they are rare patients. The vast majority of chronic

pain patients have pain that responds to rather simple, common forms of pain relief such as massage,

chiropractic, and non-opioid drugs. IP pain is different. Only potent pain relief measures are effective.


You have already done an inventory of what triggers your pain to worsen or flare which is a major

building block to controlling your IP. The second step is to do an inventory of everything you know that helps control your pain or prevents even slight pain flares. Sit right down now and review the "Inventory of Pain Relievers" found at the end of

this Handbook. IP patients who successfully control their pain simultaneously practice many different control measures. They do not rely on any single measure.


You can only control true IP by attacking it from many directions at the same time. There is no question

about it, bona fide IP will require a foundation of opioid drugs. However, they only work well, over

time, if they are part of a multi-component program. Like a good baseball team, a lot of players in many

positions must function simultaneously.

Think of your pain control program as though you are putting together a patchwork quilt. You need lots

of patches to create one huge quilt. Your pain control program must have many patches ─ big and small. Do not throw away or discard anything that helps control your pain even slightly. After all, we want to patch you up as best we can!

Put another way, build a program of blocks or stepping stones. Once we identify one stone or block

that works, we do not throw it away ─ we add to it. There is no question about it, control of IP is difficult because it requires many building blocks. Remember this saying, "If you have a winning horse, keep riding it until it drops or a better one comes along."


Provided here is a Table of the most common causes

of IP. You do not need to be an expert on causes, but

you must know your cause by its accepted medical

name. For example, you cannot have plain "arthritis."

You have "joint degeneration." You don't have a "bad

back" you have "spine degeneration." When dealing with

insurance plans and the medical system, you must state

your problem as IP secondary to its cause. For example,

"IP secondary to spine degeneration."


IP has numerous, severe complications which will shorten your life and incapacitate you unless you

take the bold measures required to control IP. Totally untreated IP will cause death within days to weeks once it starts. This occurrence, for example, has been observed following injuries to soldiers who could not obtain morphine or other potent pain relievers. Educate all persons you can about these complications. Why? Our health care system and insurance industry, as a group, want to deny that severe complications of IP exist. To acknowledge that these complications exist means that IP must be considered a


�� Spine degeneration

�� Neuropathies of leg, arm, and chest wall


o Reflex sympathetic dystrophy

(RSD, often referred to as complex regional

pain syndrome)

o Fibromyalgia

o Abdominal adhesions

�� Pelvic neuropathies including vulvodynia

and prostadynia.

�� Interstitial cystitis

�� Headaches

�� Joint degeneration - neck, hip, knee

�� Systemic lupus erythematosus

serious catastrophic disease that is expensive to treat. The list here includes conditions that are caused or worsened by IP.


Severe, constant IP, causes the mid-brain area

known as the hypothalamus to over-activate the pituitary and adrenal glands, which in turn produce excess blood levels of adrenaline, cortisol (the bodies natural cortisone), and related chemicals. Excess adrenaline causes the pulse rate and blood pressure to rise, and excess cortisol, overtime, causes loss of bone and teeth, osteoporosis, weight gain, hypertension, diabetes, and immune suppression among other complications. IP patients MUST find out if they have this syndrome, because it causes too many serious complications if it is not controlled. For example, a pulse rate or blood pressure that remains high, over time, may cause any one of several cardiovascular complications including arteriosclerosis, angina, heart attack,

and stroke. It is the author's belief that most IP patients die prematurely of heart or stroke complications.

Due to these complications, IP patients must obtain the pain control they need to keep their pulse rate

and blood pressure in check.


Uncontrolled IP drives up the pulse rate to over 84 per minute. Many patients go over 100 per minute

when their pain is in a flare or breakthrough episode. Blood pressure may also go up over 30/90mm/Hg.

It must remain below this figure.

It is critical to understand that uncontrolled pain produces damage and aging to the body, and pulse

and blood pressure let you objectively know if you are in adequate control. You MUST obtain a blood

pressure - pulse monitor for at-home use. They are now quite inexpensive and can be obtained at most

pharmacies. I recommend you check your pulse and blood pressure daily. You particularly need to check

it during a pain flare or breakthrough episode to let you know just how much danger you may be in during

a flare. For example, if the flare drives up your pulse rate above 120 per minute, you are at serious risk for a heart attack or stroke. I have observed a number of IP patients who develop angina (severe heart

pain) during pain flares and require nitroglycerine. Use your pulse rate and blood pressure to adjust your

medication. Always let your medical practitioners know what your pulse and blood pressure readings are

running at home. IP that causes blood pressure to elevate will not respond well to the high blood pressure drugs used for ordinary high blood pressure treatment. Only adequate pain control will lower high blood pressure caused by pain.


�� TACHYCARDIA (high pulse rate)


(adrenal, thyroid, ovary, testicle, pituitary)



















A fundamental fact about opioids is that they are the only medication that will truly control IP. Why?

The nervous system has specific pain relief trigger points scientifically known as opioid receptors. Natural pain relief in the body is caused by a group of chemicals known collectively as endorphins which attach and activate these receptors. Since these pain relief sites receive endorphins they are hence called "receptors." Endorphin is so closely related to morphine that the name endorphin is derived from "end," which is Latin for "in the body" and "orphin" which is the last part of the word morphine. The God-given poppy plant is the source for most medicinal opioids including opium, morphine, codeine, and hydromorphone, among others. Fundamentally, opioid drugs are natural plant or herbal compounds. Consequently, they are quite safe when taken at proper dosages and prescribed by a

knowledgeable physician. No other class of drugs now or in the future will likely relieve pain like opioids

since the natural endorphins in the brain and opium poppy plant derivatives are essentially one and the

same. They do not cause tissue damage like many other medicinals including alcohol, aspirin, acetaminophen,

and anti-inflammatory agents, but they can produce sedation, impairment, overdose, and hormone

depletion. Historically, they have been widely used since the Egyptian empire and by advanced

societies all over the world who cared about the relief of suffering and pain among their inhabitants.


IP patients have to be aware of the history, bias, safety, and true effectiveness of opioids since many

parties in modern society have been and continue to be on a campaign to ban or restrict their use. Every

IP patient will have to constantly face an ignorant bias against opioids. Bias and ignorance may be thrown

in your face by family, friends, doctors, nurses, government officials, employers, and your health plan.

The worst offenders, in my experience, are the mental health industry and the sellers of non-opioid pain

treatments. Simply put, parties who have a financial interest in keeping patients in uncontrolled pain continually bad-mouth opioids. Be prepared to educate all comers, and above all, remember that IP requires

opioids for control. There is no option. Why the bias? Opioids work too well and there is no substitute. They give an IP patient a meaningful,

extended, quality of life. I now have IP patients who have safely and effectively taken high doses of

opioids for over 20 continuous years. Current medical knowledge indicates that IP patients can have a

fairly normal lifespan if they have access to a dosage of opioids which effectively controls their pain. The real motivation behind opioid bias is money. They are expensive treatments for health plans including government plans. When IP is properly treated with opioids, the patient no longer has to hang out in emergency rooms or hospitals, undergo surgery, or go whimpering to a mental health clinic for "depression" just to get a little relief. Additionally, you do not have to soak yourself in alcohol, buy heroin from drug dealers, or become the neighborhood pothead. I have heard many a government regulator, health plan bureaucrat, and even some of my fellow doctors proclaim to me that they would like to see all IP patients deprived of opioids. Fortunately, these attitudes and biases are slowly disappearing, but always be aware that they exist.

Please know about the biggest racket and fraud going on in medicine today. Believe it or not, some

medical hucksters are claiming that opioids cause pain, and your pain will go away if you just detoxify,

stop opioids, or get psychological help!! What utter disregard for science and suffering!

In another section of this Handbook there is a section on support groups and advocacy. Every IP patient should join some support group and band with other patients, families, and advocates who support

public access to opioid pain relievers and support physician rights to prescribe opioids. I am only able to write this Handbook because of political pressure exerted in recent years on legislative and government

regulatory agencies by groups of IP patients, families, advocates, and doctors. Never take your supply of opioids for granted. They work too well and have too many financial enemies. The life you save may be your own.


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