I wrote the following on another discussion. It serves as a good intro to the message I sent to one of the moderators, who has not replied. Maybe she is off the site. I don't know.
I think these last few comments are hitting a target not discussed on this site. We all take it as a given, in light of the statements of some doctors and their popularizers on this group, that the phrase "atypical facial pain" (a neurological pain) is often a wrong diagnosis (which raises and doesn't answer the question: are there cases in which it is the right diagnosis?) and in those cases should be called atypical trigeminal neuralgia, as if this were a way to save the stigma attaching to ATP. i.e, that it is an affliction of the mentally or emotionally disturbed. The thinking is, we really don't know the cause, so let's call it something nonprejudicial -- EVEN IF THE MOST EFFECTIVE MODES OF TREATMENT ARE ESSENTIAL THE SAME; in my case, amitriptyline +.
I feel that these efforts to destigmatize facial pain may fall short of convincing and actually do harm to some sufferers. We don't make something so because we want it to be so. In fact, the flight to ATN can be seen as further stigmatizing mental or emotional injury and so work to put those accurately diagnosed as having AFP, if they exist, into even deeper into isolation. I will now publish a message I sent to Stef, who wrote the original piece on this site touting the new lingo some years ago. I have not gotten a reply (maybe Stef gets to the site rarely these days), so, after 2 attempts, I will publish it all and hope for a substantive dialogue. Look for the title "A Philosophy of Atypical Pain." My focus is on clarifying meanings and implications as opposed to giving advice or asking for help. A little wonky, but, i think, answering these question has important practical implications.
I have suffered from facial pain for decades, but found this group relatively recently. After hearing that some facial pain specialists were recommending a new way to talk about what doctors (including my own and the one he sent me to for a second opinion) have been calling Atypical Facial Pain, I was intrigued. Maybe I wasn’t perpetrating a cruel hoax on my doctors and myself after all.
I was first diagnosed with fibromyalgia by a neurologist, and later with AFP a rheumatologist. On my own, I took to calling the facial pain “fibromyalgia of the face.” I found that I could make my new pain easier to understand for those who knew me by casting it as an extension of an already existing complaint. So, to them it’s all soft tissue pain, not joint pain. I’m not entirely sure that’s wrong (it is all soft tissue pain). The fact that so many members of this group are also fibromyalgia sufferers is certainly cause for thought.
After reading your piece on this site, I became convinced, or wanted to be convinced, that my facial pain was misdiagnosed as AFP and that it more readily fit under the banner of ATN. This meant I wasn’t just a hypochondriac -- which I am, because fearing the worst is just something I do. Of course, I had “emotional problems” and still do, but my hypochondria takes another form entirely: that of unreasonable worrying about real things happening to my body. I would see a “growth” of some kind and fear it was cancer. The growth was there, sure enough, but it wasn’t what I feared it was. It was something innocuous.
The problem, of course, is that my pain can’t be seen by a doctor the way he sees a growth. Although my doctor can infer pain from my behavior (which include my words, “I’m in pain”), he can also deny it from my behavior (my fingers range up to massage my head, as if that did any good,or I tell him “I am sad”). This pain sure seems every bit as real as a visible physical symptom, only it private to me. Although the “etiology” may be “unknown,” I was thrilled to find out, from you, what I always believed or at least wanted to believe: that it couldn't be all in my head and so a matter for a shrink to deal with. I had felt minimized by my AFP diagnosis, and then you and others gave me back my reality, a physically painful place to be, but a better place to be psychologically. I didn't have a mind disease. I had a brain disease. (Let's drop for the moment the question of body-mind relationship.)
I’m a very careful observer of my own symptoms and repeatedly told my doctors that I couldn’t for the life of me correlate my level of stress or depression (I have seen a therapist on and off in my life) with more pain. Indeed, barometric pressure seems more closely tied to my pain than state of mind or anything else. Nor could I identify particularly high levels stress or depression with the onset of, first, bodily pain and, after that, facial pain. Quite the contrary: I specifically recall that both were preceded by a mono-like illness that persisted for months, the symptoms of which would revisit me several times a year for days or weeks at a time over many years – ending fairly recently, without warning or explanation.
My rheumatologist said I had “active Epstein-Barr,” but never specifically tied the virus to any of the pain. He did venture a number of theories about the mechanism of my pain, a notable one being that my blood vessels were getting false signals to constrict, which might also explain my pale complexion. Personally, I remain hooked on the virus-did-it explanation. Perhaps my Epstein-Barr did a number on my nervous system as a whole, which would eventually translate into overactive facial nerves. So, for someone diagnosed with AFP, it would then be reasonable to expect a more global influence than just the pain triggered by malfunction in the trigeminal nerve. And I had it: fibromyalgia.
In any case, after a time, he appeared to give up on etiology and started referring to my pain as the "flip side of my depression." I never accepted that model. But why, I now wonder, should I reject it out of hand? After all, I found I could manage my facial pain to a certain degree using the same meds that have, much more successfully, managed my bodily pain: Xanax and Elavil. That is to say, by an anti-anxiety drug and an anti-depressant. This made it difficult for me to claim confidently to others and myself that it was not “all in my mind.” I would explain, for instance, that I was not taking Elavil in doses large enough to lift one from depression. I could also point out that, when prescribed antidepressants in large enough doses to be effective on my mood, there was no effect on my pain. The same is true of various other modalities I’ve tried, like biofeedback, guided mediation, acupuncture, and therapeutic massage. But, secretly, I harbored the fear that maybe stress and depression lay at the root of my symptoms.
So here are my questions: despite the fact that ATN is a less ego-bruising diagnosis than AFP, how is ATN any less a “wastebasket term” than AFP? That “A” in AFP and ATN raises more questions than it answers. In Striking Back, Dr. Casey and co-author, present, without criticism, another doctor’s model for facial pain in which AFP is just one of seven types and is marked by the presence of pain outside the radius of the trigeminal nerve’s influence (like the pain of fibromyalgia). This type is characterized as psychogenic.
Casey’s recently released video talk would seem to reject this notion. But apart from the virtue of preserving my ego, what reason is there for rejecting the psychogenic hypothesis? What exactly is the difference between the two diagnoses? Do MRIs of ATN sufferers look like MRIs of TN1 sufferers or do they look like MRIs of those who are pain-free.
And even if the former show pain in the brain, why couldn’t it be psychogenic? Maybe the “unknown etiology” of some cases called AFP is indeed psychogenic. Maybe some people in this group now diagnosed as having ATN, by a doctor or by the Internet (by themselves or by others who believe they have ATN), really do have AFP: a physical disease caused by emotion, and amenable to treatment by an emotion doctor, only they’d rather not think so for reasons of ego alone. In my own case, maybe my responsiveness to Xanax reflects this fact. On the other hand, maybe Xanax works for me because my out-of-whack nervous system, whatever the cause (a virus, a phobia, or bad dentistry), needs continual quieting.
I now have a neurologist who seems to have little experience with TN. He accepts my diagnosis because his drug of choice for AFP and ATN is the same: Elavil. There is almost no point in going to him if I’m interested in new meds or treatment modalities. And, to be honest, I don’t know how interested I am, since I fear the possibility of the pain getting worse, not better, with no getting back to where I am now. Also, I’m now facing other medical problems, problems not conjured up by my life-long hypochondria. I now know what it is like for a blood test to come back positive –- and to experience potentially life-threatening, not just chronic, illness.
But whatever I choose to do now about the pain, I would still like to find out WHAT THE HECK IS GOING ON HERE. This pain has marred my life. Even if no one else quite sees it, I believe I’ve carried on almost heroically, looking normal while feeling like hell. The seeker in me just wants to know what caused this hell.