Date: August 24, 1999
Interstitial Cystitis Network - Chat Log (© 1999, www.ic-network.com)
Topic: Pain Management & IC
Speaker: Jill H. Osborne (ICRE-Support Group Leader, ICN-Founder,Manager)

Greetings everyone and welcome to the IC support chat for August 24, 1999. Our topic tonight is pain management and I have a presentation to give. Before we begin, I'd like to remind everyone of our disclaimer. Please remember that the information provided on the ICN, in our chats and anywhere on the internet is for your information only. It should never be considered personal medical advice. Only your physician can provide personal advice to you.

Diane let me know that we needed to have a meeting on chronic pain, treatments, relationships to IC, etc. etc. I've found an excellent on-line tutorial on pain from the National Institute for Neurologic Disorders and Stroke (US-NIH) that I'd like to present first and then we'll cover some IC specific pain topics. I will not be including the entire presentation on pain. You can read the full text at the link above.

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Introduction

What was the worst pain you can remember? Was it the time you scratched the cornea of your eye? Was it a kidney stone? Childbirth? Rare is the person who has not experienced some beyond-belief episode of pain and misery. Mercifully, relief finally came. Your eye healed, the stone was passed, the baby born. In each of those cases pain flared up in response to a known cause. With treatment, or with the body's healing powers alone, you got better and the pain went away. Doctors call that kind of pain acute pain. It is a normal sensation triggered in the nervous system to alert you to possible injury and the need to take care of yourself.

Chronic pain is different. Chronic pain persists. Fiendishly, uselessly, pain signals keep firing in the nervous system for weeks, months, even years. There may have been an initial mishap-a sprained back, a serious infection-from which you've long since recovered. There may be an ongoing cause of pain-arthritis, cancer, ear infection. But some people suffer chronic pain in the absence of any past injury or evidence of body damage. Whatever the cause, chronic pain is real, unremitting, and demoralizing-the kind of pain New England poet Emily Dickinson had in mind when she wrote:

"Pain has an element
of blank..."
It cannot recollect
When it began
or if there was a time
when it was not."

Pain's "Terrible Triad"

Pain of such proportions overwhelms all other symptoms and becomes the problem. People so afflicted often cannot work. Their appetite falls off. Physical activity of any kind is exhausting and may aggravate the pain. Soon the person becomes the victim of a vicious circle in which total preoccupation with pain leads to irritability and depression.

The sufferer can't sleep at night and the next day's weariness compounds the problem-leading to more irritability, depression, and pain. Specialists call that unhappy state the "terrible triad" of suffering, sleeplessness, and sadness, a calamity that is as hard on the family as it is on the victim. The urge to do something-anything-to stop the pain makes some patients drug dependent and drives others to undergo repeated operations or resort to questionable practitioners who promise quick and permanent "cures."

Many chronic pain conditions affect older adults. Arthritis, cancer, angina-the chest-binding, breath-catching spasms of pain associated with coronary artery disease-commonly take their greatest toll among the middle-aged and elderly.

Trigeminal neuralgia (tic douloureux) is a recurrent, stabbing facial pain that is rare among young adults. But ask anyone living in a community for retired persons if there are any trigeminal neuralgia sufferers around and you are sure to hear of cases. So the fact that Americans are living longer contributes to a widespread and growing concern about pain.

Neuroscientists share that concern. At a time when people are living longer and painful conditions abound, the scientists who study the brain have made landmark discoveries that are leading to a better understanding of pain and more effective treatments.

In the forefront of pain research are scientists supported by the National Institute of Neurological Disorders and Stroke (NINDS), a component of the National Institutes of Health (NIH). Other institutes at NIH that support pain research include the National Institute of Dental Research (NIDR), the National Cancer Institute (NCI), the National Institute of Nursing Research (NINR), the National Institute on Drug Abuse (NIDA), and the National Institute of Mental Health (NIMH).

Theories of Pain

In the past several decades, important discoveries about pain-suppressing chemicals came about because scientists were curious about how morphine and other opium-derived painkillers, or analgesics, work. For some time neuroscientists had known that chemicals were important in conducting nerve signals (small bursts of electric current) from cell to cell. In order for the signal from one cell to reach the next in line, the first cell secretes a chemical, called a "neurotransmitter," from the tip of a long fiber that extends from the cell body. The transmitter molecules cross the gap separating the two cells and attach to special receptor sites on the neighboring cell surface. Some neurotransmitters excite the second cell-allowing it to generate an electrical signal. Others inhibit the second cell-preventing it from generating a signal.

When investigators injected morphine into experimental animals, they found that the morphine molecules fit snugly into receptors on certain brain and spinal cord neurons. Why, the scientists wondered, should the human brain-the product of millions of years of evolution-come equipped with receptors for a man-made drug? Perhaps there were naturally occurring brain chemicals that behaved exactly like morphine. Numerous studies around the world led to the discovery of not just one pain-suppressing chemical in the brain, but a whole family of such proteins. The smaller members of the family were named enkephalins (meaning "in the head"). In time, the larger proteins were isolated and called endorphins, meaning the "morphine within." The term endorphins is now often used to describe the group as a whole.

The discovery of the endorphins lent weight to an overarching theory of pain: endorphins released from brain nerve cells might inhibit spinal cord pain cells through pathways descending from the brain to the spinal cord. Laboratory experiments subsequently confirmed that painful stimulation led to the release of endorphins from nerve cells. Some of these chemicals then turned up in cerebrospinal fluid, the liquid that circulates in the spinal cord and brain. Laced with endorphins, the fluid could bring a soothing balm to quiet nerve cells.

A New Look at Pain Treatments

Further evidence that endorphins figure importantly in pain control came from studies of some of the oldest and newest pain treatments. These studies involved the use of a drug called naloxone that prevents endorphins and morphine from working. Injections of naloxone resulted in a return of pain which had been relieved by morphine and certain other treatments. But, interestingly, some pain treatments are not affected by naloxone: their success in controlling pain apparently does not depend on endorphins. Thus nature has provided us with more than one means of achieving pain relief.

ACUPUNCTURE

Probably no therapy for pain has stirred more controversy in recent years than acupuncture, the 2,000-year-old Chinese technique of inserting fine needles under the skin at selected points in the body. The needles are manipulated by the practitioner to produce pain relief which some individuals report lasts for hours, or even days. Does acupuncture really work? Opinion is divided.

Many specialists agree that patients report benefit when the needles are placed near the site of the pain, not at the body points indicated on traditional Chinese acupuncture charts. The case for acupuncture has been made by investigators who argue that local needling of the skin excites endorphin systems of pain control. Wiring the needles to stimulate nerve endings electrically (electroacupuncture) also activates endorphin systems, they believe. Further, some experiments have shown that there are higher levels of endorphins in cerebrospinal fluid following acupuncture. Those same investigators note that naloxone injections can block pain relief produced by acupuncture. Others have not been able to repeat those findings. Skeptics also cite long-term studies of chronic pain patients that showed no lasting benefit from acupuncture treatments. Current opinion is that more controlled trials are needed to define which pain conditions might be helped by acupuncture and which patients are most likely to benefit.

LOCAL ELECTRICAL STIMULATION

Applying brief pulses of electricity to nerve endings under the skin, a procedure called transcutaneous electrical nerve stimulation (TENS), yields excellent pain relief in some chronic pain patients. The stimulation works best when applied to the skin near where the pain is felt and where other sensibilities like touch or pressure have not been damaged. Both the frequency and voltage of the electrical stimulation are important in obtaining pain relief. (REMEMBER THIS ONE FOR YOUR IC PAIN MGT TOOL KIT)

PLACEBO EFFECTS

For years doctors have known that a harmless sugar pill or an injection of salt water can make many patients feel better-even after major surgery. The placebo effect, as it is called, has been thought to be due to suggestion, distraction, the patient's optimism that something is being done, or the desire to please the doctor (placebo means "I will please" in Latin).

Later experiments suggested that the placebo effect may be neurochemical, and that people who respond to a placebo for pain relief-a remarkably consistent 35 percent in any experiment using placebos-are able to tap into their brains' endorphin systems. To evaluate it, investigators designed an ingenious experiment. They asked adults scheduled for wisdom teeth removal to volunteer in a pain experiment. Following surgery, some patients were given morphine, some naloxone, and some a placebo. As expected, about a third of those given the placebo reported pain relief. The investigators then gave these people naloxone. All reported a return of pain.

How people who benefit from placebos gain access to pain control systems in the brain is not known. Scientists cannot even predict whether someone who responds to a placebo in one situation will respond in another. Some investigators suspect that stress may be a factor. Patients who are very anxious or under stress are more likely to react to a placebo for pain than those who are more calm, cool, and collected. But dental surgery itself may be sufficiently stressful to trigger the release of endorphins-with or without the effects of placebo. For that reason, many specialists believe further studies are indicated to analyze the placebo effect.

As research continues to reveal the role of endorphins in the brain, neuroscientists have been able to draw more detailed brain maps of the areas and pathways important in pain perception and control and have found other members of the endorphin family. At the same time, clinical investigators have tested chronic pain patients and found that they often have lower-than-normal levels of endorphins in their spinal fluid. If we could just boost their stores with man-made endorphins, perhaps the problems of chronic pain patients could be solved.

Not so easy. Some endorphins are quickly broken down after release from nerve cells. Other endorphins are longer lasting, but there are problems in manufacturing the compounds in quantity and getting them into the right places in the brain or spinal cord. In a few promising studies, clinical investigators have injected an endorphin called beta-endorphin under the membranes surrounding the spinal cord. Patients reported excellent pain relief lasting for many hours. Morphine compounds injected in the same area are similarly effective in producing long-lasting pain relief.

But spinal cord injections or other techniques designed to raise the level of endorphins circulating in the brain require surgery and hospitalization. And even if less drastic means of getting endorphins into the nervous system could be found, they are probably not the ideal answer to chronic pain. Endorphins are also involved in other nervous system activities such as controlling blood flow. Increasing the amount of endorphins might have undesirable effects on these other body activities. Endorphins also appear to share with morphine a potential for addiction or tolerance.

Meanwhile, chemists are synthesizing new analgesics and discovering painkilling virtues in drugs not normally prescribed for pain. Much of the drug research is aimed at developing nonnarcotic painkillers. The motivation for the research is not only to avoid introducing potentially addictive drugs on the market, but is based on the observation that narcotic drugs are simply not effective in treating a variety of chronic pain conditions. Developments in nondrug treatments are also progressing, ranging from new surgical techniques to therapies like exercise, hypnosis, and biofeedback.

New and Old Drugs for Pain

When you complain of headache or low back pain and the doctor says take two aspirins every 4 hours and stay in bed, you may think your pain is being dismissed lightly. Not at all. Aspirin, one of the most universally used medications is an excellent painkiller. Scientists still cannot explain all the ways aspirin works, but they do know that it interferes with pain signals where they usually originate, at the nerve endings outside the brain and spinal cord: peripheral nerves. Aspirin also inhibits the production of chemicals called prostaglandins that are manufactured in the blood to promote blood clotting and wound healing. Unfortunately, prostaglandins, released from cells at the site of injury, are pain-causing substances. They actually sensitize nerve endings, making them-and you-feel more pain. Along with increasing the blood supply to the area, these chemicals contribute to inflammation-the pain, heat, redness, and swelling of tissue damage.

Some investigators now think that the continued release of pain-causing substances in chronic pain conditions may lead to long-term nervous system changes in some patients, making them hypersensitive to pain. People suffering such hyperalgesia can cry out in pain at the gentlest touch, or even when a soft breeze blows over the affected area. In addition to the prostaglandins, blister fluid and certain insect and snake venoms also contain pain-causing substances. Presumably these chemicals alert you to the need for care-a fine reaction in an emergency, but not in chronic pain.

There are several prescription drugs that usually can provide stronger pain relief than aspirin. These include the opiate-related compounds codeine, propoxyphene, morphine, and meperidine. All these drugs have some potential for abuse, and may have unpleasant and even harmful side effects. In combination with other medications or alcohol, some can be dangerous. Used wisely, however, they are important recruits in the chemical fight against pain.

In the search for effective analgesics, physicians have discovered pain-relieving benefits from drugs not normally prescribed for pain. Certain antidepressants are used to treat several particularly severe pain conditions, notably the riveting pain of facial neuralgias like trigeminal neuralgia and the excruciating pain that can follow an attack of shingles.

Interestingly, pain patients who benefit from antidepressants report pain relief before any uplift in mood. Pain specialists think that the antidepressant works because it increases the supply of a naturally produced neurotransmitter, serotonin. (Doctors have long associated decreased amounts of serotonin with severe depression.) But now scientists have evidence that cells using serotonin are also an integral part of a pain-controlling pathway that starts with endorphin-rich nerve cells high up in the brain and ends with inhibition of pain-conducting nerve cells lower in the brain or spinal cord.

Antiepileptic drugs have also been used successfully in treating trigeminal neuralgia. The rationale for the use of antiepileptic drugs (principally carbamazepine) is based on the theory that a healthy nervous system depends on a proper balance of incoming and outgoing nerve signals. Trigeminal neuralgia and other facial pains or neuralgias are thought to result from damage to facial nerves. That means that the normal flow of messages to and from the brain is disturbed. The nervous system may react by becoming hypersensitive: it may create its own powerful discharge of nerve signals, as though screaming to the outside world "Why aren't you contacting me?" Antiepileptic drugs-used to quiet the excessive brain discharges associated with epileptic seizures-quiet the distress signals and in that way may relieve pain.

Nondrug Treatments:

Treatment for pain can include counseling, relaxation training, meditation, hypnosis, biofeedback, or behavior modification. The philosophy common to all of these approaches is the belief that patients can do something on their own to manage their pain. That something may mean changing attitudes, feelings, or behaviors associated with pain.

A. PSYCHOTHERAPY

Some patients may benefit from individual or group counseling. Trained professionals can help the chronic pain sufferer learn valuable coping skills. They also provide the patient with much needed support-both psychological and emotional-for dealing with pain. (THIS IS A VERY VALUABLE PART OF AN IC TOOL KIT, FOLKS. THERE IS NOTHING WRONG WITH ASKING FOR TEMPORARY HELP TO HELP DEAL WITH THIS PAIN)

B. RELAXATION AND MEDITATION THERAPIES

These methods enable people to relax tense muscles, reduce anxiety, and alter mental states. Both physical and mental tension can make pain worse, and in conditions such as headache or back pain, tension may be at the root of the problem. Meditation, which aims at producing a state of relaxed but alert awareness, is sometimes combined with therapies that encourage people to think of pain as something remote and apart from them. The methods promote a sense of detachment so that the patient thinks of the pain as confined to a particular body part over which he or she has control. The approach may be particularly helpful when pain is associated with fear, as in cancer.

C. HYPNOSIS

No longer considered magic, hypnosis is a technique in which an individual's susceptibility to suggestion is heightened. the role of hypnosis in treating chronic pain patients is uncertain. Some studies have shown that 15 to 20 percent of hypnotizable patients with moderate to severe pain can achieve total relief with hypnosis. Other studies report that hypnosis reduces anxiety and depression. By lowering the burden of emotional suffering, pain may become more bearable.

D. BIOFEEDBACK

Some individuals can learn voluntary control over certain body activities if they are provided with information about how the system is working-how fast their heart is beating, how tense their head or neck muscles are, how cold their hands are. The information is usually supplied through visual or auditory cues that code the body activity in some obvious way-a louder sound meaning an increase in muscle tension, for example. How people use this biofeedback to learn control is not understood, but some practitioners of the art report that imagery helps: they may think of a warm tropical beach, for example, when they want to raise the temperature of their hands. Biofeedback may be a logical approach in pain conditions that involve tense muscles, like tension headache or low back pain. But results are mixed.

Where to Go for Help

People with chronic pain have usually seen a family doctor and several other specialists as well. Eventually they are referred to neurologists, orthopedists, or neurosurgeons. The patient/doctor relationship is extremely important in dealing with chronic pain. Both patients and family members should seek out knowledgeable specialists who neither dismiss nor indulge the patient, physicians who understand full well how pain has come to dominate the patient's life and the lives of everyone else in the family.

Contrary to what many people think, pain patients are not malingerers or hypochondriacs. They are men and women of all ages, education, and social background, suffering a wide variety of painful conditions.

People with pain problems may feel isolated, helpless, or hopeless. But many of those who suffer with a pain problem can be helped if they-and their families-understand all the causes of pain, and the many and varied steps that can now be taken to undo what chronic pain has done. As a result of the strides neuroscience has made in tracking down pain in the brain-and in the mind-we can expect more and better treatments in the years to come. The days when patients were told "I'm sorry, but you'll have to learn to live with the pain" will be gone forever.

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<icnmgrjill> SO, HOW DOES THIS RELATE TO IC. WELL, NOT ALL IC PATIENTS HAVE PAIN, BUT FOR THOSE OF US WHO DO, IT CAN BECOME OUR PRIMARY ISSUE ON A FLARE BY FLARE BASIS. FROM THE ABOVE, I HOPE THAT YOU'VE SEEN THAT PAIN IS A LEGITIMATE ISSUE. IT IS NOT A SPIRITUAL, MENTAL OR EMOTIONAL ISSUE. IT IS A PHYSICAL ISSUE AND NEEDS ATTENTION. SO, DO YOUR BEST TO STAY AWAY FROM ANYONE WHO SAYS THAT YOU ARE IN PAIN BECAUSE YOU AREN'T MORALLY CORRECT OR BECAUSE YOU'RE UNSTABLE. THAT'S JUST NOT TRUE. PAIN IS REAL. IC PAIN IS REAL. THERE ARE REAL STRATEGIES THAT CAN HELP US ALL WORK WITH IT!

<icnmgrjill> THE THEME OF THE ICN IS THE DEVELOPMENT OF AN IC TOOL KIT AND THIS IS WHERE YOU NEED TO FOCUS YOUR EFFORTS IN PAIN MANAGEMENT: (1) LONG TERM PAIN MANAGEMENT STRATEGIES.. WHAT CAN YOU DO A LITTLE EACH DAY, THAT OVER THE LONG RUN, WILL PUT YOU IN A BETTER PLACE; AND (2) SHORT TERM EMERGENCY.. "I NEED HELP RIGHT NOW" STRATEGIES.. WHICH CAN INVOLVE AN OPIATE OR PAIN MEDICATION.

<icnmgrjill> YOUR RESPONSE TO PAIN SHOULD NOT JUST BE FOCUSED ON THE USE OF PAIN MEDICATION BUT ALSO ON OTHER STRATEGIES WHICH CAN BE EQUALLY HELPFUL, SUCH AS TENS UNIT. IT'S NOT JUST ABOUT GOING TO YOUR DOCTOR AND ASKING FOR PAIN MEDICATION. IT'S ABOUT YOU WORKING 50/50 WITH YOUR DOCTOR AS YOU BOTH TRY DIFFERENT PAIN MANAGEMENT STRATEGIES. SO, WHILE HE MAY BE WORKING WITH YOU ON A MEDICATION, YOU NEED TO BE WORKING ON BUILDING YOUR PERSONAL SKILLS, PARTICULARLY RELAXATION.

<icnmgrjill> WE ALL KNOW THAT STRESS CAN MAKE AN IC FLARE MUCH WORSE. MUSCLE TENSION IS YOUR ENEMY! IT'S VERY IMPORTANT THAT YOU, ON A DAY TO DAY BASIS, PRACTICE YOUR RELAXATION SO THAT YOU KEEP THOSE MUSCLES LOOSE AND COMFORTABLE.

<icnmgrjill> LET'S SEE.. OTHER LONG TERM STRATEGIES. THERE ARE ANTIDEPRESSANTS, TENS, HEAT OR COLD, GENTLE EXERCISE, PARTICIPATION IN A SUPPORT GROUP AND/OR PAIN SUPPORT GROUP AND LEARNING AS MUCH AS YOU CAN ABOUT PAIN FROM BOOKS AND OTHER PEOPLE! I RECOMMEND THE CHRONIC PAIN CONTROL WORKBOOK THAT IS CURRENTLY AVAILABLE THROUGH THE ICN BOOK CLUB AND JON KABAT ZINNS "FULL CATASTROPHE LIVING."

<icnmgrjill> AS FAR AS SHORT TERM EMERGENCY STRATEGIES, THIS IS OFTEN WHERE WE GET THE MOST FRIGHTENED AND CONCERNED. THERE IS NOTHING WORSE THAN BEING UP AT NIGHT ALONE AND IN GROWING PAIN. IT'S SCARY, ISN'T IT? SO, ONE OF THE THINGS THAT WE WANT YOU TO DO IS TO DEVELOP A PLAN OF ACTION AND RESOURCES THAT YOU CAN USE FOR YOUR FLARES SO THAT, WHEN YOU HAVE ONE, YOU FEEL THE CONFIDENCE THAT DEAL WITH IT.

<icnmgrjill> IN YOUR SHORT TERM STRATEGIES, YOU'LL PROBABLY HAVE SOME MEDICATIONS AVAILABLE FOR YOUR USE (AS PRESCRIBED BY YOUR PHYSICIAN) AND AGAIN, TENS, HEAT. A VERY IMPORTANT PART OF THIS IS LISTENING TO YOUR LIMITS! REMEMBER, HAVING AN IC FLARE IS LIKE BEING IN A CAR ACCIDENT. YOU NEED *TIME* TO RECOVER. IF YOU HAD A BROKEN LEG, IT WOULD BE IN A CAST AND YOU WOULD LET IT REST FOR A WHILE. YOU WOULD NOT GO OUT AND RUN A MARATHON, OR THAT MATTER, DO A LOT OF ERRANDS AROUND TOWN. THAT LEG NEEDS SOME TIME TO REST AND THE SAME GOES FOR A BLADDER THAT HAS IC. IF YOUR BLADDER IS HURTING.. IT'S SAYING.. STOP ... AND REST! GIVE ME A CHANCE TO HEAL! THIS MAY BE AS SIMPLE AS GOING HOME AND PUTTING YOUR FEET UP OR NOT TAKING A SIX HOUR CAR RIDE WHEN YOU'RE HAVING A BAD DAY. IT MEANS ASKING YOUR FAMILY TO CHIP IN AROUND THE HOUSE SO THAT YOU CAN REST.

<icnmgrjill> ONE OTHER NOTE ON THE USE OF PAIN MEDICATIONS. I SAY THIS TO ALMOST EVERYONE I TALK TO ON THE PHONE, I WANT TO SAY THIS TO YOU TOO! "THE EARLIER YOU CATCH PAIN, THE EASIER IT CAN BE TO CONTROL! THE LONGER YOU ALLOW PAIN TO

WORSEN, THE HARDER IT WILL BE TO REDUCE!" IF YOU CATCH IT EARLY, IT WILL USUALLY REQUIRE LESS PAIN MEDICATION AND THE FLARE ITSELF, MAY STOP WITHIN HOURS. BUT, IF YOU WAIT UNTIL YOU'RE CRYING AND HYSTERICAL,ODDS ARE THAT EVEN THE STRONGEST PAIN MEDICATIONS WON'T WORK! SO.. ITS' ABOUT EARLY RECOGNITION AND ACTION!

<icnmgrjill> HERE'S ANOTHER WAY TO THINK ABOUT IT. IMAGINE WALKING THROUGH YOUR LIVING ROOM WITH A GLASS OF WATER AND YOU LOOK OVER YOUR SHOULDER TO THE DRAPERIES WHERE YOU SEE A FLICKER OF FLAME AT THE BOTTOM. THEN YOU WALK OUT OF THE ROOM.. AND COME BACK IN TEN MINUTES LATER WITH THAT SAME GLASS AND FIND THE DRAPES A RAGING INFERNO. AT WHAT POINT WOULD THAT GLASS OF WATER HAVE STOPPED THAT FIRE? OBVIOUSLY EARLY! THE SAME CAN BE TRUE FOR PAIN. IF YOU CATCH IT EARLY, IT CAN BE MORE EASILY CONTROLLABLED AND WILL TAKE LESS MEDICATION TO TREAT!

<icnmgrjill> WELL, I CAN GO ON AND ON HERE. HOW ABOUT IF WE TAKE SOME SPECIFIC QUESTIONS ONE AT A TIME...

<icnmgrjill> #1... TOLERANCE VERSUS ADDICTION. DOES A CHRONIC PAIN PATIENT WHO TAKES VICODIN OR AN OPIATE HAVE TO WORRY ABOUT ADDICTION? THE POINT YOU WANT TO REMEMBER IS SIMPLE. SOME PEOPLE TAKE PAIN MEDICATIONS TO "ESCAPE LIFE" AND "ESCAPE RESPONSIBILITY." THEY WANT TO RUN AWAY FROM THEIR SITUATIONS. THESE ARE INDIVIDUALS WHO ARE AT RISK FOR BECOMING AN ADDICT. BUT, IF YOU ARE TAKING MEDICATION (UNDER THE SUPERVISION OF YOUR DOCTOR, OF COURSE) TO REGAIN FUNCTIONALITY SO THAT YOU CAN ASSUME RESPONSIBILITY, SO THAT YOU CAN WORK OR GO TO CHURCH THEN YOU ARE TAKING THEM FOR THE RIGHT REASON.

<icnmgrjill> NOW, CAN A PATIENT DEVELOP A TOLERANCE? YES, BUT A TOLERANCE IS NOT AN ADDICTION. TOLERANCE SIMPLY MEANS THAT YOUR BODY HAS GOTTEN USED TO THE PAIN MEDICATION AND THAT YOU WILL NEED TO STOP GRADUALLY. PAIN PATIENTS DO THAT ALL THE TIME, SUCCESSFULLY!

<icnmgrjill> #2 BUNNY ASKED ABOUT HEALTH PROFESSIONALS AND WHY THEY DON'T PRESCRIBE MEDS. LET'S LOOK AT HISTORY. IC PHYSICIANS WERE TAUGHT, AS RECENTLY AS TEN YEARS AGO, THAT THEY SHOULD NEVER GIVE PAIN MEDS TO AN IC PATIENT BECAUSE IT WAS THOUGHT THAT IC WAS A HYSTERICAL PROBLEM. THANKFULLY, THE NIH HAS NOW FIRMLY ESTABLISHED THAT IC IS A REAL DISEASE.

<J> I have never had any problems getting pain meds from my uro, in fact he has told me that I know how to use them with other meds to make them work. He has also said that he wasn;t afraid to give me what I needed as I had never shown any signs of misues. I do have some strong pain meds, including morphine.

<icnmgrjill> THAT REQUIRES REAL AND COMPASSIONATE TREATMENT. IF YOUR PHYSICIAN DOESN'T WANT TO PRESCRIBE PAIN MEDS, I WOULD ASK YOU FIRST TO LOOK AT HOW YOU'VE APPROACHED HIM. IF YOU'VE WALKED INTO THE OFFICE AND "DEMANDED" MEDICATIONS, YOU ARE DEFEATING THE PURPOSE AND UNDERMINING YOUR RELATIONSHIP WITH YOUR PHYSICIAN.

IT IS VERY IMPORTANT THAT YOU DOCUMENT YOUR NEED. BRING YOUR VOIDING DIARY. KEEP TRACK OF YOUR PAIN LEVELS IN YOUR VOIDING DIARY AND THEN SHOW HIM, WITH YOUR RECORDS, THAT YOU AREN'T SLEEPING WELL. IF A DOCTOR "TURNS OFF" WHEN YOU BRING UP PAIN MEDICATION, SOMETIMES IT HELPS TO ADDRESS IT FROM A DIFFERENT PERSPECTIVE AND SAY.. "SO, DOCTOR, WHAT CAN WE DO TO HELP ME SLEEP THROUGH THE NIGHT?" OFTEN, THAT BRINGS THE DOCTOR TO THE SAME CONCLUSION, THAT SOME TYPE OF PAIN MEDICATION MAY BE REQUIRED.

<J> well said Jill, when he sees you are getting up every few minutes at night going to the bathroom he should know that you are not getting any rest.

<icnmgrjill> #3. BUNNY WANTED TO KNOW WHAT TO DO WHEN A NURSE REFUSES TO GIVE A PAIN MEDICATION THAT A DOCTOR HAS ALREADY AUTHORIZED. BUNNY, I DON'T HAVE AN EASY ANSWER FOR THAT. I WOULD ASK TO SPEAK WITH THE CHARGE NURSE ON DUTY AND HAVE THEM CALL YOUR DOCTOR TO CONFIRM THE ORDER. IF THAT DOESN'T WORK, THEN I'D ASK FOR YOUR FAMILY TO ADVOCATE FOR YOU. I GET VERY VOCAL IN HOSPITALS WHEN SOMEONE I LOVE ISN'T DOING WELL AND, WHEN WORSE COMES TO WORSE, AFTER YOU LEAVE YOU COULD FILE A COMPLAINT TOO.

<flantrac> well, in the same vain, how about pharmacists that give you a hard time?

<icnmgrjill> FLANTRAC, THAT'S AN EXCELLENT POINT. HERE IN CALIFORNIA, WE JUST HAD TWO PHARMACISTS AND ONE DOCTOR ARRESTED ON MURDER CHARGES AFTER PATIENTS THAT THEY HAD SUPPLIED WITH PAIN MEDS OVERDOSED. LONG STORY. THERE IS A LEGITIMATE LEGAL CONCERN THAT PHARMACISTS FACE. THEY ARE, IN ESSENCE, PART OF THE WATCH DOG AGENCY. HERE IN OUR STATE, IT WAS THE LOCAL PHARMACISTS THAT ORIGINALLY ALERTED OUR STATE AUTHORITIES THAT THERE WAS A PROBLEM WITH THIS PARTICULAR DOCTOR. MOST OF THE PHARMACISTS IN HIS COUNTY STOPPED HONORING HIS SCRIPTS, EXCEPT FOR THE TWO WHO KEPT FILLING THE PRESCRIPTIONS, OF COURSE. THEIR CONCERNS WERE VALIDATED WHEN THEIR PEERS WERE INDEED ARRESTED.

<J> I'm in a rural area of Tennessee and my pharmacist goes out of his way to get meds for me, if he doesn't have it, he will call until he finds someone who does and then gives them all the insurance info and they have it waiting on me when I get there.

<icnmgrjill> I DON'T KNOW IF I HAVE AN EXCELLENT RETORT TO THE PHARMACIST, OTHER THAN ENCOURAGING HIM TO TALK WITH YOUR DOCTOR IF HE HAS ANY CONCERNS AND PERHAPS BRINGING AS MUCH LITERATURE AS YOU CAN ON IC TO EDUCATE HIM, PERSONALLY, ABOUT THE NEEDS OF IC PATIENTS..

<flantrac> Well, I guess I would like to know the various meds we use. Is that appropriate for this forum?

<asstmgrdiane> When people look at you and call you a druggie, what would you say to them?

<icnmgrjill> FLANTRAC.. HOLD THAT THOUGHT AND I'LL COME BACK TO YOU! DIANE.. LET'S COVER THAT ONE. FIRST

<LisaGIC> "Walk a mile in my shoes and call me again."

<helen> walk a mile in my shoes

<LisaGIC> : )

<icnmgrjill> ALOT OF WISDOM IN THIS ROOM! I THINK IT'S ALSO APPROPRIATE TO SAY THAT NOT ALL DISEASES ARE VISIBLE AND IF SOMEONE WERE TO HAVE CANCER, WOULD YOU DENY THEM ACCESS TO PAIN RELIEF. IF THEY SAY "NO".. THEN YOU CAN PROVIDE THE NIH DEFINITION OF IC PAIN WHICH STATES THAT IT IS, INDEED, EQUIVALENT TO CANCER PAIN (FOR SOME.. BUT NOT ALL OF US).

<J> I have seen many times on the general message board that someone has had back surgery and her IC was cured. I don't understand how this works. If there is an inflamation in the bladder how does your back affect that. Any answers?

<bunny> I try to forgive them and pity them

<icnmgrjill> LET'S TALK AOUT NERVE STIM FOR A MOMENT. IN THE EARLIER PRESENTATION, IT DISCUSSED THE IMPORTANT INVOLVEMENT OF THE SPINE TO ALL PAIN SENSATIONS IN THE BODY AND, PARTICULARLY FOR CHRONIC PAIN PATIENTS. BACK IN THE WAYYYY EARLY DAYS, SOME PHYSICIANS FELT THAT THE WAY TO TREAT SEVERE PAIN WAS TO SEVERE THE NERVES

<Terri> Nerve stim question - do they only offer that to severe pain patients, or to all with some pain??

<icnmgrjill> AND, INDEED, THAT WAS DONE ON IC PATIENTS MANY MOONS AGO. HOWEVER, THERE WERE RAMIFICATIONS, SUCH AS THE DEVELOPMENT OF INCONTINENCE AND/OR THE LOSS OF MUSCLE CONTROL AND SENSATION. WE THEN SAW THE DEVELOPMENT OF NERVE STIMULATORS WHICH, IN ESSENCE, INTERRUPT THE PAIN SIGNAL ELECTRONICALLY. MEDTRONIC, FOR EXAMPLE, CURRENTLY MARKETS A SACRAL NERVE STIMULATOR CALLED "INTERSTIM" (WWW.MEDTRONIC.COM). IT WORKS BY DISRUPTING THE PAIN SENSATION TO THE SPINE THROUGH THE USE OF AN IMPLANTED ELECTRODE AND STIMULATOR UNIT.

<icnmgrjill> IS IT A CURE FOR IC? NO, ABSOLUTELY NOT. IT DOES NOTHING TO REPAIR THE BLADDER. BUT, FOR SOME PATIENTS, IT HAS BEEN HELPFUL IN REDUCING FREQUENCY AND URGENCY. INTERSTIM IS FDA APPROVED ONLY FOR INCONTINENCE, FREQUENCY AND URGENCY. IT IS NOT, AT THIS POINT, APPROVED FOR IC OR, FOR THAT MATTER, PAIN MANAGEMENT.

<Terri> Nerve stim question - do they only offer that to severe pain patients, or to all with some pain??

<flantrac> interesting, Mayo is pushing it

<icnmgrjill> TERRI, IT IS ONLLLYYYY A FINAL OPTION. THIS IS NOT AN EASY TREATMENT FOLKS. IT IS INVASIVE, PAINFUL TO DO AND HAS SOME RAMIFICATIONS.

<Terri> they offered it to me in 1996, that's why I was wondering...

<icnmgrjill> LET ME CONTINUE.. FOR A MOMENT AND THEN WE'LL COME BACK TO THAT. THE SECOND COMPANY THAT DOES NERVE STIM IS ADVANCED NEUROMODULATION SYSTEMS (ANS). THEIR DEVICE IS CALLED "NEUROSTIM" AND IS CURRENTLY BEING USED IN MEMPHIS AT DR. BROOKOFFS CLINIC. IT IS VERY NEWLY BEING APPLIED TO PELVIC PAIN PATIENTS

AND SO THERE IS NOT ALOT OF DATA SURROUNDING THE EFFECTIVENESS OF THIS PARTICULAR DEVICE. IT IS, HOWEVER, STRUCTURALLY DIFFERENT FROM INTERSTIM. IT HAS SEVERAL MORE ELECTRODES AND, SOME BELIEVE, CAN BE MORE EFFECTIVE AT COVERING MORE NERVES. AGAIN, WE HAVE NO RESEARCH SUPPORTING EITHER AS A TREATMENT FOR IC.

<icnmgrjill> THE THIRD OPTION IS ONE THAT I'M QUITE EXCITED ABOUT BECAUSE IT IS NOT SURGICALLY INVASIVE, COSTS $2,000 INSTEAD OF $30,000 TO DO AND THERE ARE NO REPORTED SIDE EFFECTS FROM THE DEVICE. IT IS CALLED "SANS" THE STOLLER AFFERENT NERVE STIMULATOR AND IS CURRENTLY BEING PRODUCED BY WWW.UROSURGE.COM. SANS IS CURRENTLY IN CLINICAL TRIALS IN THE USA. THAT'S WHAT I WAS OVER IN ENGLAND TALKING ABOUT. I WAS ONE OF THE ORIGINAL SANS PATIENTS BACK IN 1993. I WAS SUCH A SEVERE PAIN PATIENT BACK THEN AND HAD TRIED DMSO AND VARIOUS ANTIDEPRESSANTS TO NO AVAIL. KAISER PAID FOR ME TO VISIT DR. STOLLER AT UCSF, WHERE I BECAME ONE OF THE FIRST PATIENTS IN THE CLINICAL TRIAL. FOR ME, I FEEL THAT IT WAS THE FIRST THING THAT BROKE MY VERY SEVERE PAIN CYCLE AND IT DIDN'T INVOLVE SURGERY AT ALL. YOU CAN READ MORE ABOUT THAT AT: WWW.UROSURGE.COM. SIX YEARS LATER, I STILL DO IT AT HOME. I FIND IT VERY EASY TO DO AND THAT IT STILL HELPS ME. AGAIN, IF YOU REFER TO THE ORIGINAL PRESENTATION ABOVE, YOU'LL SEE WHY THEY BELIEVE THAT NERVE STIM/TENS CAN BE HELPFUL IN REDUCING PAIN.

<icnmgrjill> OKAY.. NOW ON TO MEDS. THERE ARE FOUR CATEGORIES OF OPIATES CURRENTLY AVAILABLE. (Inserted into the Transcript after the session.)

(Source: Veract Clinic "Information for Patients: Opioids Available for Treatment)

LONG ACTING OPIATES:

(1) Methadone

(2) Fentanyl (Patch)

INTERMEDIATE ACTING OPIATES:

(1) Levorphanol Tartrate - 2mg only.

(2) Oxycodone (Oxycontin)

(3) Morphine (Morphine Contin, Oramorph, Kadian)

SHORT ACTING OPIATES:

(1) Hydrocode (Lortab, Vicodin, Norco)

(2) Codeine (Fiorinal, Fiorcet)

(3) Propoxyphene (Darvon, Darvocet)

(4) Dihydrocodeine (Synalgos)

(5) Pentazocine (Talwin)

(6) Butophanol-nasal spray (Stadol)

(7) Oxycodone (Percocet, Percodan, Tyllox)

(8) Morphine

(9) Meperidine (Demerol)

(10) Hydromorphone (Dilaudid)

SUPPOSITORIES FOR EMERGENCY USE:

(1) Morphine

(2) Opium & Belladonna

(3) Hydromorphone (Dilaudid)

(4) Oxymorphone (Numorphan)