Coping With Crisis -- A Seminar for Facial Pain Patients
Richard A. "Red" Lawhern, Ph.D.
To correspond with the author, send email to firstname.lastname@example.org
This page is also available as a word document: see Coping.doc
To all who read this page, welcome.
As we begin, let's offer an acknowledgement and encouragement. The acknowledgement is that for some readers, this article might get to be tough going at times. Pain is scary in addition to being hurtful. Crisis can be scary too. Put them together and you've got a naturally anxiety-producing subject. But interestingly, the Chinese symbol for crisis is composed of two characters representing danger and opportunity. As one faces new challenges in life there are opportunities to grow.
As you read difficult information in this article that may affect you, you may find yourself becoming anxious. If you need to take a break and come back later, then do. But remember as you read that the objective here is to COPE with crisis and get past it to better places. If you learn something here that helps you be better prepared, calmer, more emotionally centered and grounded, then you might find it possible to avoid the crisis altogether. That is an outcome worth aspiring to.
This page is intended to be a sort of "one-stop shopping experience" for people who are dealing with one or more personal crises growing from chronic (long-term) pain in the face or head. Some aspects of this article will inevitably apply in a broader context. If you or someone important to you is having a rough time, then feel free to apply whatever you can. Appropriate source credit would be appreciated if you quote from the work at length in other published venues.
As your "principal author/editor," I write in first-person, drawing from my own and others' knowledge and research. The paper is assembled from the experience of multiple individuals and organizations. However, any remaining errors are my sole responsibility. To recommend corrections, you may send an email to email@example.com. If you are reading this page at the website of "Living with TN'" you may enter comments in a comment box at the foot of the page.
"Coping With Crisis" is written for web publication in two venues:
(a) an on-line support community known as Living With Trigeminal Neuralgia, and
(b) my personal webpage at Lawhern.org.
Although this article can be read by itself as a stand-alone document, it is also cross-linked to a companion paper, Face Pain Information, to avoid duplication and reduce your initial reading load. Some who come to this work may be in real-time deep difficulty. You need answers "right now'" not next week.
To help you find your way around, the following is our master index. Each of the six highlighted titles in the index is a hyperlink to that section of the paper below. Return links at the base of each subsection will bring you back to the top of the index.
-- Who Am I?
1. Who are the intended readers?
The intended readers of this page are facial pain patients, family members, significant others, helpers, care-givers, patient advocates and friends. There are resources here for each of you. The objective is to assist a person who is suffering with severe and long-lasting pain to get through a bad time and come out the other side better prepared and able to function in his or her own behalf. For family members, an additional objective is to better understand what the pain patient is experiencing and how you can best help.
For both family and nonfamily caregivers who've been engaged for a while, parts of this page might feel familiar. The principles are not new. But one reminder might be unfamiliar even if you've not been paying attention to your own welfare up to now: both doctors and laypeople who deal constantly with the pain of others, can suffer burnout. Caregivers sometimes need care too. There is a substantial literature that has shown caregivers experience much higher rates of depression than the general population. So make sure you are taking good care of yourself first. [Ref 7] You need to plan for and manage your own time and energies, because they aren't limitless. Sometimes, you might need a "break" (also known as a "respite"). We'll talk about that a little further along.
I have heard it said that for long-term pain patients, every day is a crisis of some kind. Although no two people are the same, perhaps there is justice in that observation. Pain patients often find that their sleep is disturbed. They become anxious and irritable. Family members sometimes grow distant or hostile. The world they once knew and enjoyed seems to be receding to a distant horizon while the foreground is occupied by crushing, burning, stabbing pain... pain... and MORE PAIN... or by the fear that the pain may come back even though we're OK right now. They find themselves asking plaintively, "What's happening to me? -- Will this never end?" Sometimes the answers aren't obvious.
Fortunately, almost nobody lives with this amount of adrenaline quite every day. Some days will go halfway or even almost entirely right. Your pain turns out to be "manageable" at a level of two or three on your personal scale of ten. Your child doesn't accuse you of desertion because you can't accept a kiss on your cheek due to trigger zones. Your doctor doesn't think you're a nut case who has made up your symptoms out of frustration with your marriage. You get out of the house for a whole three hours and you come home (this time) only because you're a bit tired. Today was not one of those where you retreated from public view because you were nearly knocked to the ground by a burst of pain that seemed to come out of nowhere.
A reminder: these incidents don't happen to all facial pain patients. But for the ones who've "been there," they can certainly be a perceived crisis.
What we're hoping to deal with on this page are the -- we hope few -- days when pain or anxiety goes "over the top" or depression seems to open a bottomless pit beneath you. We want to look at times when you think "It's just too much -- I can't deal with this anymore!" The objective is coping with and getting past a crisis.
Sometimes the event or stimulus that puts you over the edge and into acute crisis is something other than the day-to-day "stuff". For some patients, the straw that figuratively breaks your back emotionally might be an incident of extreme break-through pain. As the term implies, this is pain that seems to come roaring through every medication you're taking, to knock you on your behind and leave you gasping just to take the next breath. If you're fortunate, you'll never go through this kind of day or night. But if you're in such a situation or have been before, then Priority One in your life must become controlling the pain. Nothing and nobody else is important enough to matter. This is one of the situations in which it can help you greatly to have a very clear plan in advance, "just in case".
So how do you develop a plan? It is likely to have these elements:
* Call your doctor's office and speak to the triage nurse if he/she has one. If you can't speak, then have a family member speak for you. The essential message is "I am in agonizing breakthrough pain and I need immediate help with crisis care. Please ask the doctor now when I can be seen today."
* If you can't reach the doctor or he/she will not schedule an emergency appointment, then go to a local urgent care clinic or hospital emergency room. In the UK, it will be an "Accident and Emergency Center." For Europe and the rest of the world, find a local clinic, dispensary or Drop-In Centre. If there is no public transportation and you cannot drive yourself, have a family member drive you. If you live alone, call a friend or neighbor. If you live in an isolated area and can't reach neighbors, call the nearest office of law enforcement and ask for emergency transportation. An ambulance should be your last resort. They are expensive and few paramedic teams will recognize the kind of pain disorder you are dealing with.
* When you reach an emergency care facility, tell the receptionist that you need to be seen immediately by the resident in charge of treatment, for a pain crisis. If you have sensations of breathlessness or compression in your chest, tell the receptionist that your heart may be involved. If you cannot speak, then give the receptionist a copy of your Attending Physician Advisory form (we'll talk about this form further down the page).
* When you see the doctor, tell him you're in crisis and ask for immediate interventional pain control medication. If you know that a particular medication has been helpful in the past, then tell the doctor which one and at what dose you got timely relief from pain. If you have a written prescription for this med, you should bring it with you. If you use powerful medications for your pain, it may also be a good idea to keep both the original medication container and the written prescription with you whenever you must drive.
* After you are treated, do not leave the facility without a copy of your record of care and a written prescription or referral for follow-up care.
One further note: Don't present your health crisis as a psychiatric crisis. You want health professionals to treat your pain rather than being dismissive.
A special thought on dental work: sometimes even routine dental work (teeth cleaning, filling a dental cavity) can become a cause of either original neuropathic injury or breakthrough pain from a preexisting injury. A section of the companion paper on Facial Pain Information may help patients who already have a facial pain diagnosis to avoid adding insult to injury.
Chronic facial pain patients are most often treated with medications as the first line of defense. Some of these medications can produce serious side effects (see Side Effects of Medication and Surgery in the companion paper on "Facial pain Info"). A few people may be allergic. Fewer still may experience toxic skin reactions, suppression of bone marrow, liver problems or major vitamin deficiencies in the bloodstream. Some sources recommend that persons of Asian descent be tested for certain genes that are implicated in toxic systemic reactions to Carbamazepine (Tegretol).
Even reactions short of outright toxic allergy can be sufficiently disabling that you may be unable to work outside your home while you are under treatment with particular meds. These reactions vary considerably between people; some folks have them and some don't. A local pharmacist may be able to help you interpret medication directions, warnings and cautions. However, remind yourself that severe adverse reactions are typically very rare. Knowing that they can occur, you can help yourself to do better by recognizing them if they do.
When your doctor writes a prescription for drugs used to treat facial pain, he or she should advise you on expected side effects of each medication and for how long the effects may last. The doctor should also address possible interactions with previously prescribed medications. If your physician has not mentioned this issue, then call his or her office and ask. Especially as you are beginning a new course of any of the antiseizure medications, you should be seen regularly (monthly) and have your blood tested every 90 days. It is especially important to monitor liver function while on many of these meds. As advised on authoritative websites such as rxlist.com,
"Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat."
Getting emergency medical help is described in the subsection immediately above.
The nature of personal crisis isn't always physical, although nearly any type of stress might be associated with an increased level of pain. Pain is tough on families and relationships too, perhaps particularly so for husbands or wives. As many of us have so often heard, "How can you be sick? You look so normal!" Important family members sometimes do not understand why a pain patient so often retreats to bed or cannot be reliably available for even the most routine social events.
There can also be active hostility from a few people. Some people feel their own vulnerability in the suffering they see and cannot (or think we cannot) help in another person. We feel helpless to help or otherwise closed out of the life of the pain patient. That can make even good people grumpy or hostile. Unfortunately pain patients might sometimes hear such hostility voiced in statements such as "I think you're making too much of this. And I'm tired of being alone all the time." For your own and others' welfare, such statements need to be lovingly confronted and refuted.
By the same token, if you're feeling worthless and inadequate to meet the needs of your family, that sort of internal statement needs to be lovingly refuted too. Spouses often feel helpless when you are in a pain crisis. On a day that your are feeling well, bring up the topic and tell your partner ways that he or she can be most helpful to you during a pain crisis. Make sure to express your gratitude for their help. You will help both yourself and your partner by taking this approach.
The wear and tear that chronic medical conditions create in relationships is not unique to face pain. People who deal with chronic disorders are frequently prone to depression and withdrawal from activities that were once fun, rewarding or nurturing. The depression can be compounded by circumstantial losses such as loss of a job, financial difficulty or even personal bankruptcy. It has been estimated that 60% of US personal bankruptcies are caused by medical bills. [Ref 1] In some cases, the emotional disruptions or bankruptcy or of an underlying medical condition might also result in separation or divorce. [Ref 7]
There is, however, a step that you as a pain patient or family member can take to help people who "don't get it". One of the cures for hostility and emotional distance is information -- about you and about the effects of pain in general. Your family member can be invited to visit or join on-line sites like "Living with TN'" to inform themselves and to talk with other people who are going through a journey similar to yours. At Living with TN, there are three resources in particular that you might recommend to someone who is struggling to understand what has happened to the person they thought you were:
Another step might be to share with your family member, a story that a patient told me which I contributed to the book "Striking Back -- The Trigeminal Neuralgia Handbook." The following is a close paraphrase.
To understand how I go through each and every day, you have to imagine that I am followed through every waking hour by an invisible 8-foot-tall demon. The demon pulls along with him a little brazier of hot coals in which he has placed several implements: a couple of knitting needles, a scalpel, a fireplace poker, a butcher knife. At random moments throughout the day -- but especially when he sees that I'm not anticipating what he is about to do -- the demon reaches into the brazier for one of his tools and rams the red-hot implement through my cheek and eye, twisting the implement as he does.
As I fall to my knees and curl up in a quivering ball, I silently plead with him in my thoughts to stop, for I cannot speak aloud through the pain. But he never does. He goes on stabbing me every 15 to 30 seconds, until my facial nerves have gone numb from repeated battering by this pain. "
"He will do the same to me a few hours later and there is no relief."
No two pain patients have an identical experience, of course. And some days you will have better quality of life than others. But the last thing you need is somebody who is closely in your life who calls you an hysteric, a slacker or a candidate for the psych ward. If a story like the one above can help sober somebody up, then use it.
-- A doctor "doesn't get it"
A doctor, dentist, or endodontist can become a significant cause of personal crisis for the patient if they get off on the wrong track and won't change course when their errors are pointed out to them. If you have been diagnosed with one of the forms of Trigeminal Neuralgia, then take a moment to review the steps you had to take before any medical doctor used that term. From a patient survey filled out by over 10,000 people for the US Trigeminal Neuralgia Association (TNA) in the late 1990s, it was learned that the average facial pain patient visits six different doctors and/or dental practitioners before getting a diagnosis for their pain.
That's right -- SIX!
It is not accidental that we hear frequently from patients that they've been told that they know more than doctors about their facial pain disorders. They sometimes do know more. Although chronic neuropathic facial pain is probably less rare than once thought, it is still not common. Most neurologists see only a few cases in a lifetime practice.
In the TNA survey, there was also considerable evidence that many patients initially receive an inaccurate diagnosis, particularly where a dentist assesses the patient as having Temporomandibular Joint Disorder (see Could I Have Temporomandibular Joint Disorder? in our companion article, Face Pain Info). Many physicians don't have adequate training or experience to recognize a relatively rare disorder such as trigeminal neuralgia when they see it. The training of dentists in neuropathic facial pain is even sketchier -- and dentists are often the first professionals that a patient sees after the pain starts. Many patients are unfortunately subjected to multiple dental procedures that do nothing for the pain, before the dentist reconsiders that perhaps the pain isn't dental in origin. [Ref 7]
Sometimes even the professionals who are supposed to know what facial pain is all about, don't seem to. In the 16 years I've been talking to facial pain patients, I've lost track of the number of people who have told me "my doctor says he can't find any physical cause for my pain and he wants me to see a psychiatrist for counseling." Some doctors simply don't notice or perhaps don't consider that this kind of entry in a patient medical record can be seriously damaging not only to the patient's emotional and physical health, but also to financial welfare. Insurance companies may refuse to pay for further referrals to medical doctors, pending a psychologist's finding on whether or not the pain is imagined. And psychologists can spend weeks meeting with a patient to make that determination, while pain goes inadequately treated.
The truth is that there is absolutely NO way a physician can determine if your pain is psychogenic, even if one accepted the existence of such a class of disorders (which I do not). If the doctor doesn’t find an assignable cause for your pain, then he or she may be tempted to diagnose a psychiatric problem. But, for example, Trigeminal Neuralgia has no specific medical test that can identify the disorder. Diagnosis is only made on the basis of your pattern of symptoms and your response to medications. Thus, it is legitimate for a medical professional to tell you "I am unable to arrive at a diagnosis of your pain -- I want you to see another specialist." But it is not legitimate for a medical professional to imply that your pain isn't real.
In my personal view, any doctor who would write off a patient in this dismissive manner needs to be dealt with in the following manner:
(a) In calm language you should assertively state that pain syndromes of unknown origin are quite common. The fact that he or she cannot assign a medical cause for your pain is not sufficient grounds for assignment of a psychiatric diagnosis. Indeed, you should tell the doctor that you consider such a diagnosis personally insulting. It is important that you remain calm in such an interaction, because the more "worked up" you are, the more you may confirm the doctor's mistaken belief that you have a psychiatric problem.
(b) Wait until your crisis is over and you have access to good medical care. But then take the time to file a formal complaint to the CEO and Chief Resident of every hospital where your former doctor has admission privileges. But be strategic: don’t think about complaining as much as the fact that “you are educating them”. You are hopefully making it easier for the next patient.
(c) Again using an educational approach, report the doctor in a formal complaint to the standards committee of the nearest branch of his/her Medical Association.
(d) If you receive no corrective response from your first three steps above, then file formal complaint with the State Board of Medical Examiners (in the US) or its local equivalent outside the US.
At one time, I would have added "sue the b*stard for malpractice". But it has since been pointed out to me that you would need to show a specific financial harm to recover anything through such a court proceeding. And if you're in pain, you have other, more important fish to fry.
The only exception I would personally make in this sequence of events would be for a physician who agrees to undergo a program of medical retraining to re-qualify before treating pain patients. Unfortunately, steps like those above are rarely taken. The pain is too preoccupying for most patients. Thus an effective self-defense against a doctor who concludes that the pain is "all in your head" might involve a personal advocate who can speak for you. We'll talk more about such advocates below.
-- An employer "doesn't get it"
Sometimes an employer is the main factor in a crisis that leaves you very down and depressed. I've talked with well over 100 patients in the past 16 years who have been laid off or fired for "performance problems" when their pain caused time away for medical appointments or on their "bad days". Some US employers seem to ignore provisions of the "Americans with Disabilities Act,'" a law that requires them to make "reasonable accommodation(s)" for employees who are affected by chronic medical disorders or illnesses. A letter from your doctor might help your employer to understand what kinds of accommodation are needed for someone who has your diagnosis and medical treatment plan. If you have a human resource advisor on your staff, then he or she may be able to navigate issues of reasonable accommodation with your superiors
It is a sad fact, but true, that some employers do not want to have to make accommodations. They would rather that you are forced out. They don’t want to fire you because then you get income from the company in disability payments or unemployment. In a few cases, employees with whom I've talked were deliberately reassigned into situations or environments where the patient's sensitivity to heat, cold or drafts caused facial pain to grow worse. The transparently obvious objective of these reassignments was to force the employee to resign under circumstances where the employer would not be held accountable for unemployment insurance or disability payments. This is truly vile behavior on the part of any business. But it does occasionally happen.
An important thing to remind yourself -- and perhaps to tactfully remind your employer (in the US) as well, if your relationship seems to be turning toxic -- is that employer reassignment actions of this sort can be legally actionable in a lawsuit where you have an excellent chance of winning significant punitive damages. So if you have been diagnosed a relatively short time ago and are facing difficulties created by an insensitive employer, then I would advise that you consult a lawyer who specializes in workplace and labor law. Before the lawyer does anything "official" that produces documentary records, try giving the company the benefit of the doubt. They are ill informed and need to be educated (in this case by you) before they do something dumb enough to be successfully sued for large amounts of money. Only after "diplomatic channels" are exhausted, should an attorney file formal legal action.
The first 45-minute lawyer consultation in the US is traditionally free. If you want help preparing a formal notice to your employer, you can expect to pay a retainer. If it looks like you need to go to court, many lawyers work on contingency, taking no fee unless they win the case and then taking about a third of any financial reward. If the first lawyer you contact won't work on that basis, then keep looking. Be sure to ask the attorney if they will negotiate a fee percentage. Many do negotiate but only if asked and few people ever feel confident enough to request that lawyers take a lower percentage. Local laws and arrangements with barristers will vary in other countries.
-- Job loss, financial difficulty or bankruptcy issues
In spite of the best of intentions and a calm approach to your employer, some people lose their jobs anyway -- simply because the pain and meds used to control the pain take too much from their energy and attention span. Job loss isn't the end of your world, although it can be beastly hard. That's especially true if one is too deeply in debt or otherwise overcommitted to a life style that can't be supported without the patient's job. Getting to a sustainable level in a new situation often means downsizing your expectations. Millions of people go through this. Many of them come out the other side with their life values renewed and families stronger than before.
Meantime, you need to survive emotionally and take care of daily business.
There are resources in every community that can help in such circumstances, but you or somebody close to you will have to dig them out. It is best that you start the process before rather than after you're involved in a bankruptcy proceeding. Resources in the US may include the following. There are local equivalents in many other countries
-- Caregivers and advocates in your immediate family, social circle or church organization
-- Community nurses or public health nurses
-- Physician and/or pain management referral services of local hospitals
-- Consumer Credit Counseling offices for debt resolution counseling -- often administered through a city or county "Family Services" office in the US
-- Legal Aid Office
-- Every state has a Vocational Rehabilitation Office. It is required by federal law. This agency will help people with documented disabilities in finding employment that they can manage with their disability.
--Federal law also requires every US state to have Independent Living Centers designed to help people with disabilities access services they need to remain independent. They are required to be staffed with at least 51% of staff being people with disabilities. They’re generally compassionate places to land when you need help with finding resources
-- Local offices of Social Security Administration -- Disability Insurance
-- Referral services for supportive therapy or counseling by a psychologist or marriage and family counselor
(also frequently through Family Services offices)
-- Regional or US national sources for reduced-price or subsidized medication: see Free and Low-Cost Medical Care Resources
-- Filing for disability
Filing for disability insurance isn't necessarily a "crisis" in itself. But job loss for many people is. Thus you may need to apply for help at a time when you are otherwise in the middle of a mess. You might find yourself dealing with multiple distractions while you're trying to get financial help for your day-to-day expenses. If you have a family member who is willing to research the procedures on the Internet, then it may be a good idea to talk with that person and ask for assistance to be certain that you're going about the process correctly. Even if you do it yourself, it's still good to have another pair of eyes looking over your shoulder.
The disability process is different from country to country. In the US, it is also different for private disability insurance (which you have paid for, or which was provided through an employer) versus Social Security Disability Insurance (SSDI) or State Disability in the five US States and Puerto Rico which offer it. The central "contract" is the same. In return for having paid a monthly insurance premium, an insurance company or government agency will partially replace your income for some identified period of time, after a medical condition which makes it impossible for you to work.
For both public and private insurance, there is a waiting period after you have been forced to stop working, before you can receive disability compensation (for SSDI, it is five full months after "date of onset"). In California, Hawaii, New Jersey, New York, Rhode Island and Puerto Rico, you may be able to file for disability immediately under State programs that you will have paid into while employed. Rules vary from state to state. [Ref 8]
To qualify for disability under SSDI, you'll need to go through an evaluation called "Residual Functional Capacity" or RFC, and demonstrate a level of disability which will keep you from working for at least a year. There is also a maximum amount of money that you are allowed to earn from occasional or part-time employment, without jeopardizing your SSDI benefit. Disability payments and allowances for other outside income are generally not high. But everything helps.
In the US, it is important to know that the SSDI application process may involve at least three stages which might require a year or more to get through. To start, you need to go to your nearest Social Security Administration office for pamphlets which describe what you do and what documents you need at each of these stages.
Opinions vary on when to involve a lawyer in your disability application process. Many on-line lawyer websites will encourage you to engage a professional early. However, for the first two rounds of the process, you won't need a lawyer and in my opinion you might be well advised not to hire one. A lawyer' fee for representing you in the SSDI process can be determined in one of two ways, both of them set by the Social Security Administration, not State law. The nominal fee is 25% of any award that you get of SSDI payments previously denied, up to a maximum of $6,000. However, the lawyer may also petition the Social Security Administration for some other level of compensation after an award is made, based on his or her expenses and time spent.
If you must change disability lawyers in the middle of a case, things can become both complicated and expensive. For background reading see The Social Security Insider . Be aware also, that some lawyers don't support first-time applications because they feel the awards may not be large enough to cover expenses. In any event, if you and/or a family member can do this process for yourself without a lawyer's help, you might come out better financially.
Your disability application will need to be backed by letters from your doctor (or doctors). These letters must identify your medical diagnosis and describe any past or present treatments that have a bearing on your ability to work. The doctor will also describe your symptoms and reactions to treatment, showing how these symptoms make it impossible for you to engage in regular employment -- even working from home. Many patients report being required by SSDI to interview with or be seen by another doctor who is appointed to evaluate you and confirm that the symptoms and issues in your application actually exist. [Ref 2]
The doctors who support your application need to be considered mainstream practitioners. The findings of a Chiropractor or Herbalist will have much less credibility than those of an MD, Doctor of Osteopathy or Ph.D. Psychologist. Some psychologists are specifically trained in the evaluation of disability claims. Having a report from such a professional which documents your disability, can be very useful in winning your claim. [Ref 7]
About a third of all first-time SSDI applications are granted on the first try. Another 10-20% are granted on a "request for reconsideration". The rates of successful application vary sharply from US state to state. Numbers quoted on the website of The Ultimate Disability Guide vary from a high of 52% approval on a first application in Hawaii, to a low of 23% in South Carolina.
If you apply for SSDI and are denied, be sure to appeal that denial in the appropriate time frame given otherwise you can’t reapply for a specified amount of time. If you request reconsideration and are again denied, there is a second level of review in front of an Administrative Law Judge. At this level you should be represented by an attorney. There is yet a third level of review in the Security Administration Appeals Council or Federal District Court. Theoretically, you could go even higher than the Appeals Council in Federal Court, but such legal actions are relatively rare.
Be aware that once you have "won" an SSDI case, you also need to be mentally prepared for a periodic review by the Social Security Administration to determine whether you continue to be disabled. If all of this looks like an obstacle course to you, then you have a lot of company among disability applicants.
For additional information and insights, I suggest that you visit the Ultimate Disability Guide, above.
A second on-line resource with much information is The Social Security and Disability Resource Center.
A third provides extensive samples of various applications, decisions, etc. Social Security Disability Facts.
An article on Living with TN also provides insights: see How Do I Submit and Support a Disability Claim?.
A government portal with information about disability rights and support in the UK: Direct Gov -- Services for Disabled People
See also the introductory explanation of site contents pertaining to disability at Direct Gov. .
Many patients I've talked with over the years have related that they sometimes feel they know more about Trigeminal Neuralgia (and other forms of face pain) than the doctors they have visited seeking help. We shouldn't be too surprised by this outcome. Estimates of the prevalence of trigeminal facial pain range in the area of 12 to 24 new cases per 100,000 per year [Ref 4, 5] In a country the size of the United States, that means that fewer than 90,000 people may go to a doctor with unexplained facial pain each year that is then diagnosed as Trigeminal Neuralgia. Many general practitioners never see a case of Trigeminal Neuralgia in their professional lifetimes. Unless they have had postdoctoral specialist training, the average GP might also have fewer than 20 hours of Medical School training in facial neurology and neuropathy.
So maybe you DO know more than your family doctor about face pain. Or at least maybe you should. Even if you are relatively new to this small club, you can soon learn enough to help yourself get better care from specialists who are more knowledgeable than a GP. The fact that you are reading this article should tell you that you already have a head start on the project. It can be critical that you find a specialist -- probably a neurologist -- who understands Trigeminal Neuralgia, Temporo Mandibular Joint Disorder, and other forms of facial pain. Such a specialist will understand that there is a generally accepted protocol (a sequence of actions by a medical practitioner) for trying medications that may help you. Your physician should also be following you closely, especially in the first stages of your evaluation. If you get no relief after two weeks of a new medication, then it is time to consider trying something else. At the same time, you should have regular blood tests to ensure that new medications are not causing toxic effects in your body.
So where can you and your family or friends learn from authoritative and balanced sources? The following websites should be on your reading list:
PubMed -- US National Institutes of Health, National Library of Medicine -- index to more than 15 million medical article abstracts.
-- Know the signs of depression
Part of learning as much as you can about pain must be an understanding that chronic pain can very often be depressing. The two conditions are often referred to as "comorbid" (they create harmful effects at the same time). Chronic pain patients are three times as likely as the general population to experience depression. [Ref 5]. For doctors, it should come as no surprise that pain and depression are often associated. An association between pain and depression is found repeatedly in medical literature. And there is evidence for a biological cross-action in underlying neurochemistry that is common to pain and depression. [Ref 7] Pain can disturb sleep, soak up your attention and energy and narrow your world down to a constant grinding horror. Depression, in turn, makes you more vulnerable and sensitive to pain even as it makes life seem less worth living. It is a deadly circle. And it can impair you almost before you realize what's going on.
There are many websites for people who are clinically depressed and/or their families who suspect they may be. One of the better known is the Depression Health Center of WebMD. The following list of indicators and signs of depression is extracted from that source:
According to the National Institute of Mental Health, symptoms of depression may include the following, experienced over a period of at least two weeks:
Not mentioned in this source, but also a useful indicator can be "being so slowed down that others have commented on your behavior." [Ref 7]
Several of these symptoms overlap the effects of chronic face pain, of course. [Ref 6] But -- as a rough rule of thumb -- if you observe any three of these indicators in your own or somebody else's behavior, then it's time to suggest that you or they be seen and evaluated for depression by the family doctor or by someone the family doctor recommends.
-- "Give yourself a talking-to"
If you believe that you are depressed or have been diagnosed by a professional, then there are several dimensions in any plan for feeling better. Obviously, people who are in physical pain would want a way to make the pain go away -- and indeed many desperately seek such an avenue. But it doesn't always happen. And when it doesn't, you'll need to find ways to cope with the pain and live a more positive life in spite of it. One of those ways has to do with the ways you manage your own moods.
The grandmother of a friend of mine once summed up her approach to her own physical infirmities in a single sentence: "Sometimes when I'm feeling down in the dumps and sorry for myself, I just give myself a good talking-to." This lady in her late 80s had severe osteoarthritis and had recovered from lung cancer 20 years earlier. She had fallen a few times, although never broken her hip. She didn't get out of her own home very much, but she was never truly alone. People came to her and from what I could see, much of what brought them into her home had to do with her attitude. With a bad back and knees -- and pain every day of her life -- she was fun to talk to. She swore up and down that she'd once met a lady who may have been the prototype Madame for "The Best Little Whorehouse in Texas" -- and that the lady had gone into politics. She played a positively devious game of Rummy. I refused to play poker with her for money, on the advice of her grandson.
While the story above might impress some folks as off-topic, it actually has quite a lot to do with managing depression. That's right, I said "managing depression." The process is a lot larger than just taking a pill. It can also involve regular low-impact exercise such as Tai Chi or Yoga, physical therapy, supportive psychological therapy (particularly Rational Cognitive Therapy, or more recently "Cognitive Behavioral Therapy") learning to manage your own thoughts and feelings, and even changing your own attitude. Sometimes you may benefit from the help of a counseling or therapy professional as you learn how to do these things. But there is a lot you can do even without their help.
"People can come to identify irrational thoughts that lead to negative affect and replace these thoughts with neutral or even positive thoughts. A main emphasis in Cognitive Behavioral Therapy is changing negative thoughts and maladaptive beliefs. There are clear negative patterns or styles of thinking that often lead one to negative conclusions. These thoughts must be identified and challenged.
Do you recognize any of these thought patterns in yourself?
Selective abstraction -- The total context of the situation is missed and one focuses on one small negative aspect of the situation. A broader view could lead to a different conclusion. You only look at one small feature.
Magnification & minimization -- you exaggerate the importance of things (such as your mistake or someone else's achievement), or you inappropriately shrink your own desirable qualities.
Catastrophizing -- overestimating odds of negative outcome
Emotional reasoning -- the process by which one judges illogically only on basis of one’s own feelings.
Black and white thinking -- this is when someone is only able to see the extremes of a situation, and is unable to see the “gray areas” or complexities of the situation in a complex situation. Maybe the doctor is a bit gruff and impatient, but s/he might be knowledgeable about your disorder and have some good advice. So do you concentrate on the gruff or on the advice?
Do you have a particular stance that leads to negative conclusions and negative emotions?
Are you a “Perfectionist” who always points out flaws? Efforts are not good enough, or you are intolerant of mistakes or setbacks?
Are you a “Worrier” who imagines the worst case scenario, overestimates the bad, creates images of catastrophe?
Are you a “Critic” who finds fault in everything and everybody?
Are you a “Victim” who feels helpless, hopeless, as if something was inherently wrong with you?
Cognitive Behavioral Therapy trains people to challenge mistaken beliefs by acting and thinking differently:
a. Ask what is the evidence for the belief? Get specific. Maybe you are basing your judgment on little information. Challenge the negative thoughts. Replace them with a different, more positive explanation.
b. Ask is this always true? You may be having a bad pain day today but you know you have some good days too.
A story shared with me by a friend and colleague also serves to illustrate the overall principles of self-management. Dinah Federer is a former rehabilitation counselor, herself disabled by chronic pain and neurological disorders.
I've had TN since about 1999. I have it on both sides because I was born with a neuromuscular disease and my nerves never developed properly. My neurosurgeon said my trigeminal nerve is so thin and wispy that it's barely visible.
My TN pain has been sporadic. I had a Gamma Knife procedure in 2002 and again in 2010. I was on Neurontin for 10 years. I can't take the typically prescribed sodium- blocker meds because of my neuromuscular disease. Even Neurontin made me permanently weaker. I worked full-time until February, 2009, when I simply couldn't physically do it any longer.
TN has caused two major crisis periods in my life. The first time was when the pain started. I knew nothing and turned to my neurologist in a state of panic. He was rude and obnoxious and said basically that I needed to get over it because I was going to be in pain all the time. I was infuriated and this awakened my "inner barracuda." I told him that we needed to clarify our relationship as follows:
1- I was paying him and therefore he worked for me, not the other way around. He needed to remember that he wasn't doing me any favors. He was being paid handsomely for his time.
When in crisis, do what you can to take your power back so that you don't get stuck in victim mentality!
In 2009, I had another extended bout of relentless pain. I was put on a low dose of Zonegran. The med pushed me into a black depression and I frequently had thoughts of checking out. However, my job had made me quite medication savvy. I recognized that my mood was caused by the medication and that my thoughts and hopelessness were not real.
When depressed, self-talk is crucial. Watch your thoughts of hopelessness and remind yourself that this feeling is rooted in pain and chemicals. All the thoughts that say you're useless, that people would be better without you, that nobody would miss you, etc. That's all fog created by your condition and it's not true. You're the only one who can clear the fog in your head. If you think this is medication-related, then talk boldly with your doc to inform him/her of these side effects and demand a different medication.
Things to do--
- Ask for help, DO NOT isolate; you need friends to support you and remind you of who you are
- Get and stay in touch with other TN survivors; it helps to know you aren't the only one on this road.
- Let family and significant others know when your pain is bad; remember that this disease is invisible, they only know what you tell them and they can't support what they don't understand.
- Be gentle with yourself---remember chronic pain is a damned full-time job
- Seek counseling but interview prospective counselors first and see if they understand chronic pain. Don't waste your time on one who doesn't 'get' it
Good luck on your journey!
--- --- ---
Dinah has turned her experience of pain and limitation into a remarkable book. "Chasing Normal -- A Guide for the Newly Disabled and for Those Who Love Them" is available through Amazon Books and at www.chasing-normal.com. With her permission, a list of steps toward a better quality of daily life is also extracted in a companion article to this paper, Face Pain Information
Several points that both Natalie Ericsson and Dinah make and that I personally applaud, are as follows:
-- Refuse to allow any medical person to blame your pain on your depression
--- Remember that your doctors are your employees
--- Confront directly, anyone who uses terms like "psychosomatic" or "conversion disorder"
--- Be watchful of depressive side effects from drugs used to treat pain.
-- Take back your power
--- Enlist an advocate to help you do things that you can't do alone
--- Stay connected
-- Explore the spiritual and mindful dimensions of pain management
The phrasing of this advice might be a little unfamiliar both to some patients and to their doctors. However, there truly is both a spiritual and mindful dimension in pain management. The spiritual dimension is familiar to many people as prayer, and the mindful dimension as meditation or "centering of consciousness". [Ref 9]
What might not be as familiar is that there is emerging scientific evidence that prayer and meditation may actually influence the vulnerability of the body to pain, and the intensity with which pain is felt. A large body of medical and scientific literature is now devoted to what is called "placebo effect". [Ref 10, 11] When patients who have pain are told by a doctor or other figure of authority that a therapy "is known to help many patients", and then given an inert pill that has no medical properties, a substantial proportion of them will report improvement in their sensations of pain or discomfort, their levels of measurable depression, and their overall feelings of well-being.
Their expectations literally change their experience of medical therapy as well as daily life.
However, this effect is more than a matter of emotions or a positive attitude at work (as helpful as a positive attitude can be). By means of functional MRI, the activity levels of small areas of the brain can now be monitored and traced in real time. The activities of the brain display substantially different patterns when a person is expecting a positive result from medical treatment, versus when they are simply given a pill in a randomized trial. Different centers of physical regulation and response in the brain are involved when expectations are engaged, versus when they are not. Pain regulating centers are significantly reinforced by expectations of a positive outcome.
Less known to popular and medical literature, is the phenomenon of "nocebo effect". When patients are offered a therapy by physicians or other providers toward whom they have negative feelings or expectations, even valid medical therapies are less effective than when offered by a provider toward whom the patient has positive feelings. This effect has been documented in several pain conditions. [Ref 10]
These effects are not marginal or second-order to some "real" level of medical treatment. In many medication trials, it is found that the range of positive outcomes attributable to the patient's expectations can be larger than the effects produced by the medication itself. And when a positive relationship is established to the therapy provider, the amount of positive "placebo effect" in some trials may double. [Ref 11]
These effects have two rather profound implications. First, a positive approach and expectations of successful medical treatment on the part of the patient can have a direct and constructive impact in generating better outcomes. Second, your doctor needs to listen to the science and realize that it is no longer permissible within the guidance of modern medical ethics to objectify patients or distance themselves emotionally from the patient's pain and suffering. The stronger the patient's trust and positive feelings are toward the doctor, the more likely it is that the patient will get an improved result from treatment.
"Bedside manner" and a positive doctor patient relationship matter in patient outcomes. Caring is an important resource in effective care-giving.
For many people, one of the strongest resources in coping with bad events or experiences in life, may be prayer. [Ref 9] By "giving the problem to God", or praying for personal strength and healing, some people are able to step back from their anxiety and fearfulness, reduce their stress levels and feel significantly less pain. Whether one believes in the intervention of a Divine Creator in such outcomes or not, patients benefit from reduced stress. For those who are believers, prayer can thus become a part of healing or reducing pain.
The positive effects of stepping back and letting go are not restricted to the religious. Another avenue to similar results exists side by side with prayer. Across the world, millions of people meditate for 20 minutes at least once per day, to achieve a mental state of quiet mindfulness and release of stress. There are both religious and non-religious forms of meditation, and they work to generate positive outcomes in reducing pain and reclaiming mental clarity even under the influence of drug side effects. Quite possibly, prolonged mindfulness and release of the ego-mind may positively affect the same centers of neuro-biological activity that are engaged in placebo effect.
For further exploration of this dimension of coping with crisis, the reader is referred to the references below.
-- Prepare to cope with crisis before you're in one
We've previously summarized resources that might be categorized as "help networks".
If you are married or in a significant emotional and living-together relationship, the first person you turn to might be your partner. But he or she should not be the only source of your emotional or research support. As you probably know by now, severe facial pain can strain not only the patient's emotional resources, but also those of a significant other. So don't focus solely on him or her. During periods when you feel mentally clear and physically able, talk with other family members also -- your teen-agers, perhaps a sister or brother who lives nearby, parents if they are close enough to drive you to a doctor's office or run an occasional errand (and if they are themselves mentally clear and physically able). In other words, "spread the load". You're on a journey that may last years and take you places that scare you at times. So don't expect a single conductor to run the train for you full-time. If you're in crisis, then try to imagine the feelings of someone who is watching you go through it, who doesn't understand all of what you're experiencing.
A sense of "community" in big cities sometimes seems lacking. But many of us have neighbors that we know well enough to speak to, even in a city. If you happen to live in a small community or an isolated rural area, neighbors tend to appreciate and support each other. So invite a neighbor for dessert or a cup of coffee. And be up-front about why: not only do you want to get to know them better, but you'd also like to know if they might be available if you find yourself in need of a ride to a local doctor or clinic and aren't able to drive yourself. You're a chronic pain patient and sometimes you have really rough days. There's no crime in that and you're not proposing to shanghai anybody into doing more than they feel comfortable doing. It never hurts to ask.
Your doctor might also be an important member of your local help network. Certainly, he or she is the first person to call if you're in a pain crisis.
About Respite Care: If you're a caregiver who regularly supports a chronic facial pain patient, then realize that the one who is hurting isn't the only one carrying a load. You are too and sometimes you're likely to need a break. So develop a hobby or enjoy a pursuit away from home. Get out from time to time. Remain active and connected in your community even when your partner can't. In some cases, you might need a longer break for up to a few days. What I have in mind here is "respite care".
If you can't get assistance from other family members to come and stay for a few days, then remember that many communities have assisted living facilities for older residents who need to have medical care or nursing services on standby near them. Some facilities also provide short term residence care for people who most of the time live at home with a caregiver most of the time. As adults, pain patients can check themselves in and out of such a facility. If your caregiver needs a break and you don't feel up for managing on your own, then it might help to suggest this alternative.
Many facial pain patients find that on-line bulletin boards, chat rooms and forums can literally become a "lifesaver". When you're homebound at three in the afternoon, avoiding light breezes that set off bolts of lightning in your face, or you're pacing the floor with a deep ache in your jaw at three in the morning, you may be able to sit at your computer and write. Other patients who have been through this journey will understand your need to "vent". They can also offer information or suggestions to address your concerns. Pain can be very isolating and such connections with Internet friends can help you overcome the aloneness.
There are several on-line venues specific to the concerns of facial pain patients. Among those of particular value are the following:
Living with TN -- a Community of Ben's Friends. This is a wide-ranging forum, with particular strength on "Atypical" Trigeminal Neuralgia and Opioid treatment options.
The Facial Pain Association (FPA) -- formerly the Trigeminal Neuralgia Association of the US. TNA has links to other TN Associations world-wide. I regularly advise facial pain patients to join TNA in order to be able to search its Knowledge Base for authoritative articles.
Neuro Talk Communities -- Trigeminal Neuralgia Forum. Particularly helpful as information background are five long threads pegged to the top of the forum. But one can see multiple discussion threads at Neuro Talk which are quite similar to those at Living With TN or the Facial Pain Association.
Many patients find that chronic pain tends to lap over into the emotional dimensions of their lives, in ways that they don't always know how to handle. Sometimes families don't know what to do either -- and helplessness can breed frustration. In such circumstances, you might find that an ongoing relationship with a psychologist or family therapist can be constructive for you and for people who live closely with you. This is not because the pain is all in your head (which it isn't), but because you need somebody to talk with who is objective and trained as a listener or adviser, and who also understands the effects of chronic pain on mood and thinking. It’s also important that any therapist you work with be comfortable in supporting the grief process. People with chronic pain often feel that their old lives have ended on some level. A counselor needs to be able to support the person as they grieve their losses and try to rebuild a new life that now encompasses chronic pain.
Another useful step in seeing a psychologist may be to seek training in mental tools that can help you to help yourself. Many patients compare their feelings to those voiced by people who have experienced "Post Traumatic Stress Disorder" (PTSD). The comparison seems particularly apt when a patient responds to facial pain by becoming chronically fearful, anxious and nervously jumpy. The mental tools which may help to deal with such reactions seem to fall into the general area of psychology called "Rational Cognitive Therapy (RCT)" or more recently "Cognitive Behavioral Therapy".
Most psychiatrists are a bad bet for supportive counseling or therapy. They're expensive as doctors and rather often no more effective in counseling than their less "qualified" colleagues in psychology or marriage and family counseling. However, psychiatrists are also MDs who can prescribe medication, where the other practicing mental health professionals cannot. A significant number of psychiatrists do medication management full-time, rather than engaging patients in therapy. While medication management is most often directed to depression, a psychiatrist can also manage meds for chronic neuropathic pain. It is also fairly common for severe pain to be accompanied by anxiety or panic attacks. Thus the services of a psychiatrist can be helpful for more than one dimension of total care.
When you see a psychologist or psychiatrist for ancillary support in chronic pain, it will be wise to establish from the beginning of your relationship that you are not seeking help for a psychosomatic disorder. Specifically, there is no such medical entity as "conversion disorder". The complex of behaviors sometimes labeled "complex somatoform symptom disorder" in the American Psychiatric Association's Diagnostic and Statistical Manual (DSM) is also not valid. Both designations are under direct and sustained challenge in the formulation of revised diagnostic criteria for the fifth edition of the DSM. [Ref 3] Nonetheless, if you encounter a doctor who tries persistently to hang such a diagnosis on you, don't bother to try to educate him or her. Cut your losses and run.
See "Is Psychogenic Pain a Real Medical Condition" in the companion Facial Pain Information article.
If you find yourself in the midst of a pain crisis and you decide that you really need to be seen by a medical professional for immediate help, then it is likely you will be dealing with someone who is a stranger to you, possibly in a hospital emergency room. And you may be meeting this stranger under highly inopportune conditions, when your pain makes it difficult or even impossible to speak clearly. Some patients report being unable even to think clearly beyond the pain. So what do you do then?
One of the things you might do is to dig into your wallet or purse for a filled-out form that summarizes much the information which a doctor will need in order to help get your pain under control -- without admitting you to an expensive hospital stay. With the help and feedback of a number of chronic pain patients, I have prepared and published an example of such a form. The form is introduced and explained on "Living with TN". See Attending Physician Advisory form.
A second step might be to purchase and wear a "Medic Alert" bracelet. They come in several forms from multiple sources on the Internet. The central idea is to provide information to a medical team if you should find yourself unable to communicate clearly in your own behalf. None of these bracelets -- that I know of -- is currently specific to Trigeminal Neuralgia. But all can be engraved with a short message identifying chronic medical conditions. Such a device could prove particularly important for someone who is hypersensitive to drugs.
We've talked about sources of emergency medical help at the beginning of this article, which I'd like to emphasize again here. Your best help is always going to be someone who knows you and is close enough physically to see you in person. Thus your first line of inquiry outside your immediate family should be to your own doctor. If you aren't able to reach the doctor or get an emergency appointment, then you can go to a local hospital emergency room, urgent care clinic or, distress center, or in Europe and the rest of the world, a local clinic, dispensary or Drop-In Centre.
There are also crisis intervention centers in many communities; these centers are normally staffed by medical doctors, psychologists and psychiatrists. Such clinics often provide intervention services for suicidal or mentally disorganized people, drug addicts and alcoholics. But staff are also frequently familiar with the medical infrastructure of their local communities. They can recommend a better pain doctor, if you need one.
Some people hold off on going to a hospital emergency room out of fear that they will be thought to be "medication seekers," or that they may even be turned away. We must recognize that pain medications are widely abused by addicts. But you're a pain patient, not an addict. The two are not the same at all. Although they rely on medications to control pain, facial neuralgia patients have few of the deep cravings for a drug of choice that so often characterize addicts. Likewise, in the US, you literally cannot be legally denied access to emergency room services. This is true regardless of whether you've been there before and regardless of whether you have medical insurance coverage. They have to see you and they have to try to help, or risk being sued.
When you are seen in an ER or admitted to a hospital overnight for a chronic pain condition, you might later meet someone before you are discharged whom you didn't know existed: a post-discharge care planner. Hospitals around the world have increasingly come to recognize that they are seeing many patients repeatedly who might be better and less expensively served in outpatient settings. For many people in the US -- particularly the less financially stable -- an Emergency Room is their primary access to medical care. Such conditions drive up overhead costs and have put some private hospitals out of business. Thus hospitals have a powerful motivation to help you find effective local follow-up care, to keep you from coming back.
A post-discharge care planner can help you find medical specialists who better understand and might better treat your pain conditions. If fact, you might avoid a crisis by talking with such a person at your local hospital, before the crisis happens. Start with a call to the patient referrals office of any large hospital in your area.
Are you really at the end of your rope and have not been able to get local help? Do you have thoughts of ending your life? Well, you are not alone in that. Tens of thousands of people have been there before you -- and have come back to the world of the living by making a better choice. A major positive step in making that journey back can be talking with someone who has been trained to evaluate people and help them to reach better destinations.
Several websites on the Internet concern themselves with suicide prevention and crisis intervention. Not all of such centers deal with chronic pain and comorbid clinical depression as a primary mission; many are focused primarily on alcoholism and depression. But physicians who support these centers generally know of other practitioners who work with pain patients. The following links will take you to places where such centers are listed with contact e-mails and phone numbers. If you are seriously considering harming yourself, please use these links, find a hotline and call.
Suicide Hotlines by state in the US.
Befrienders of Canada -- Distress Centers in Canada
Befrienders in Europe (nearly 50 links to listings of distress centers by country)
5. About the Author
-- Who am I?
As noted in a companion paper "Facial Pain Information'" I am a longtime patient advocate and Web author. My doctorate (UCLA, 1976) is in engineering systems, not medicine. I'm a technically trained medical layman who reads a huge volume of medical literature and remembers much of it. You can think of me as a sort of biological learning machine who is working on your behalf.
I began researching chronic neurological facial pain in 1996, when my spouse presented with pain diagnosed as bilateral Vaso-Glossopharyngeal and Trigeminal Neuralgia. I served the US Trigeminal Neuralgia Association as Webmaster and a member of its Board of Directors in the late 1990s, coauthored the design of the TNA National Patient Survey in 2000-2001 and contributed to a more recent version still (in July 2011) being vetted by the TNA Medical Advisory Board. My 2001 redesign of the TNA home page was acknowledged by an Aesculapius Award of Excellence in Health Communications from the Health Improvement Institute.
In the 16+ years of my work in chronic pain patient advocacy and support, I have corresponded by e-mail with more than 3,000 patients, family members and physicians around the world. It would probably be fair to say that I've talked -- as an informed layman -- with more chronic facial pain patients than the average neurologist sees in a 40-year career.
I currently provide information research and referral support to chronic facial pain patients through TNA Connect, the TNA Network, LivingwithTN.org and The Neurological Disorders support group at WebMD. I have done similar volunteer work in the past at About.com. I am credited as a co-author of the Internet Resources appendix of “Striking Back -- the Trigeminal Neuralgia Handbook” (first edition). I also wrote almost all of the current entry on "Atypical Trigeminal Neuralgia" on Wikipedia.
-- Appropriate cautions and disclaimers
I am not a medical doctor or certified counselor. Anything that you read here which is to influence your management of your own facial pain should be discussed with a licensed medical practitioner who has broader pertinent experience and knowledge.
I am no longer affiliated with TNA/FPA management or site administration. Nothing on this page has been reviewed or approved by them or anybody else, other than by some of my co-moderators at "Living with TN." The content of this page is edited from my own research and that of other members. I believe the content reflects "informed" opinions, but it may not reflect the views of the Owners of Living With TN. The Owners are not responsible or legally liable for the accuracy of information here.
1. Theresa Tamkins, CNN Health: "Medical bills prompt more than 60 percent of U.S. bankruptcies" June 5, 2009, http://articles.cnn.com/2009-06-05/health/bankruptcy.medical.bills_1_medical-bills-bankruptcies-health-insurance?_s=PM:HEALTH
2. Dinah Federer, private communication to the author. Disabled people can also apply for disability benefits (SSI, supplemental security income) based on low income or an abbreviated work history; the rules are slightly different, however.
3. Mark D. Sullivan, MD, "DSM-IV pain disorder: a case against the diagnosis'" International Review of Psychiatry (2000), 12, 91± 98
4. Joseph S.H.A. Koopman, Jeanne P. Dieleman, Frank J. Huygen, Marissa de Mos, Carola G.M. Martin, Miriam C.J.M. Sturkenboom, “Incidence of facial pain in the general population” Pain 147 (2009) 122–127
9. Bernie S. Siegel, M.D. Love, Medicine and Miracles -- Lessons Learned About Self-Healing From A Surgeon's Experience With Exceptional Patients, Harper and Row, New York, 1966.
10. Lene Vase, Kathrine Næsted Nørskov, Gitte Laue Petersen and Donald D. Price,
11. Karin Meissner, Niko Kohls and Luana Colloca, "Introduction to placebo effects in medicine: mechanisms and clinical implications, Philosophical Transactions of the Royal Society of Biological Sciences, 4-14-2011, pp 1783-1789.
This article has benefitted from the review and offered insights of several people. Dinah Federer contributed both her story and her insights on the disability application process, gained from several years as a neuromuscular disease patient and TN patient as well as a career as a rehabilitation counselor. Susie Margaret Ross provided detailed typographic editing far above and beyond the call of duty. Jackie Cornfield offered her thoughts on not scaring people too badly, while at the same time informing them on difficult subjects. The article also benefits from Jackie's familiarity with online disability resources in the UK. Dr Natalie Sachs-Ericsson, a member of the faculty in the Department of Psychology at Florida State University, generously volunteered her time and experience in exploring medical literature on links between pain and depression, as well as the use of Cognitive Behavior Therapy to control depression.
To all four contributors, "thank you".
Richard A. "Red" Lawhern, Ph.D.