This was posted on the main moderator site, and I would like to share it with you. Red joined Ben's Friends to support his wife who suffers from TN (Trigeminal Neuralgia) he has become a moderator for that site, and an advocate for his wife and others who suffer this disease, he also often forwards new research info to our group on FMS, and hopes to expand his research into many other of our rare diseases!
Thank you Red, and Thanks to Scott for posting it!
Unfortunately, his wife's story will sound familiar to us all!
- From Susan (Fibro Community)
Red Lawhern's Editorial
Red wrote an inspiring editorial about his wife's battle with Trigeminal Neuralgia and how many patients, a disproportionate number of whom are women, are told, "it's all in your head."
It’s NOT all in Your Head
by Richard Lawhern, Ph.D.
The life journey which led to writing this began in 1996, when my spouse went through an excruciating series of root canals. She was in pain for weeks. Two years later, the pain came back to stay. Anti-inflammatory medication didn’t touch the agony she experienced on the side of her face opposite the root canal work (and later at different times on both sides). Not even opioid medications did much for her.
Over a period of a year, she was seen by a dentist, a maxillo-facial surgeon, an ear nose and throat specialist, a general practitioner and two neurologists. The last of these physicians heard her medical history and said “I think you have Trigeminal Neuralgia, but I don’t often see it or treat it. I’m going to prescribe an anti-seizure medicine for you which often helps. For more information, you need to contact the US Trigeminal Neuralgia Association.”
That was it: take these pills and talk to other patients who have your kind of pain.
I have since discovered that this sort of response is not uncommon for patients who have relatively rare or subtle medical disorders. There are over 3,000 such disorders, and others seem to be emerging all the time. Many medical doctors hate chronic medical problems which soak up their time and resources but which don’t get better. This may be particularly true of chronic pain conditions, and is even more broadly true of the medical issues of women.
Over 100 million people in the US suffer from chronic pain – defined as pain lasting longer than 12 weeks. Up to 80% of those sufferers are women, many of whom report having been repeatedly brushed off or referred out by medical doctors who could find no discrete medical cause for the symptoms they reported. Some patients report an even harsher finding by their doctors: “To the best of my ability to determine, your pain is not medical in origin. I believe you need to be evaluated by a psychiatrist or psychologist who is qualified in psychosomatic issues.”
[The quote is exact, from a patient who understandably wishes to remain anonymous]
My response to my wife’s pain was to make myself a layman expert on the subject. As an operations research analyst, I had taught market research and open source intelligence methods to professionals and librarians in those fields. Thus it was natural for me to turn to the Internet. In 1996, there were fewer than 4,000 “hits” on the term “Trigeminal Neuralgia” in Internet search engines. I read quite a few of them. In the Fall of 2013, there are 1.4 million hits. I’d like to think I’ve contributed to that growth of visibility, though it is surprising how often I continue to encounter pain patients who first hear the term from a neighbor, friend, or nurse, rather than from a doctor.
In the volunteer work that I do with pain patients these days, I’ve taken time to ask them about their experiences with medical doctors who referred them for mental health evaluation for symptoms that the doctor couldn’t put a disease name to. In an alarming number of cases, females among this population are written off as “hysterical” — a common rejection or shunning that is quite well established as an issue in both lay and professional literature. The same kinds of referral also occur with men, but significantly less often. For many patients, a better course of treatment emerges later with a different doctor who finally recognizes what is going on after several others have missed the diagnosis. For some, the light never appears at the end of the tunnel. Suicide is a real risk among those who have been told “it’s all in your head.”
The term “hysteria” casts a long shadow over issues of chronic pain. The contemporary roots of the term go back to a French neurologist named Charcot and to one of his students, Sigmund Freud. In my studied opinion, Freud’s theory of “female hysteria” is one of the most widely accepted mythologies ever invented out of thin air and academic surmise. Professionals who regard themselves as learned have invented an entire field of psychological practice around the term. We call that field psychosomatic medicine, and politely ignore the reality that its practitioners are rarely able to help their patients get better in any consistent way.
I am not one of those who claims that there is no relationship between our emotions and our physical health. There is ample evidence in medical and lay literature to the contrary. What I do claim, however, is that the preponderance of evidence shows that physical sickness or prolonged pain cause us to be depressed and anxious, particularly when no cause or effective treatment can be found for medical problems. Depression can wear us down physically by depleting our energy reserves. But in my view, depression does not cause our pain, even if it plays into or amplifies pain of medical origins.
There is no such thing as “psychogenic” pain. PERIOD!
I also agree that sensitivity to pain can sometimes be managed or moderated by resort to methods from the mental health toolbox: rational cognitive therapy, creative visualization techniques, stress control, meditation, the Yogas, moderate physical exercise to promote endorphins, and (perhaps) dietary changes. At least one class of psychoactive medications can also play a positive role in some forms of pain. The Tri-Cyclic Antidepressant (TCA) drugs are known to have a cross-over effect against pain of neuropathic origin, even at doses below those believed to be therapeutic for depression itself.
My message to medical and mental health clients is “It’s not all in your head.”
Footnote: My spouse has proven to be one of the lucky ones who respond positively to anti-seizure medications with minimal side effects. She has managed her pain and lived a full professional, social and family life for the past 16 years. Many chronic pain patients are not as fortunate.
I'm inspired by this essay and proud to call Red a friend. And thrilled to be associated with him through Ben's Friends.