Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

This morning I got a note from our member "Trach" that may be of concern to many members.  He pointed out an article in Psychology Today which indicates the American Psychiatric Association is well on its way to committing malpractice against each and every one of us.  The APA will publish a new version of its Diagnostic and Statistical Manual in March of this year.  The DSM working group which deals with psychosomatic medicine has proposed to combine and broaden definitions of so-called "Somatic Symptom Disorder" to such a degree that anyone with an unexplained pain disorder and depression could be written off as a head case and refused effective medical therapy. 

The magazine "Psychology Today" published an article in December by the MD who heads up this DSM working group -- and who clearly disagrees with its conclusions.  The article is MIND BLOWING for revealing the arrogance and misinformation which prevails within the APA.  In response to that article and a related BLOG on health which is maintained by Psychology Today, I have posted the following public comment in your behalf.


I write as an 18-year patient advocate and online researcher who has corresponded with over 4,000 chronic facial pain patients, family members and physicians. I was webmaster and a member of the Board for the US Trigeminal Neuralgia Association in the late 1990s. I now moderate and write content for "Living With TN", a peer-to-peer social networking website affiliated with the Ben's Friends community for rare disorders, serving 3500 members world wide.

Mine was one of many inputs offered to the APA last year through their public commentary gateway on the DSM-V. I was among those urging outright abolishing of the category of the DSM pertaining to so-called "conversion disorder", and other theorized somatic mental disorders. My grounds for this position were that (as far as I know from years of searching) there is no body of validated observational data which confirms the existence or character of any such category of mental disease. NONE!

While pain and depression are often co-morbid in chronic pain patients, I have seen no body of evidence that supports the existence of any such medical entity as so-called "psychogenic pain". I speculate that depression is very often a natural side effect of the fatigue generated by agony -- and of being dismissed and marginalized both by medical doctors and by the people in one's life upon whom we most often rely for emotional support.

With these concerns in mind, I have circulated the following note to a wide circle of professional friends and colleagues"

Dear friends,

The American Psychiatric Association seems to be on the brink of making a disastrous ethical and medical error. It is about to validate a psychiatric mythology as real, enabling the dismissal or mistreatment of potentially hundreds of thousands of medical patients who have complex or ill-understood pain disorders. I urge any of you who are affiliated with professional communities, to please read and pass on the following article, as well as the blog link at its end. And I urge those of you who are licensed practitioners, to advocate for immediate action by your own professional associations, to stop this atrocity in its tracks.


Richard A. Lawhern, Ph.D.
Moderator, "Living With TN"

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Thank you so much for advocating for us Red!  You are our rock and I don't know what we would do without you!

They don't need to revise the DSM to write off chronic pain patients as "psych cases," they often do it now anyway and many medical doctors are complicit in the madness. BTW, they are getting more sophisticated with this. One psychiatrist told me that Freud is out and Pavlov is in when it comes to "somatoform disorder." Its not so much that the patient is converting psycho-social stress to physical symptoms through some mysterious process nobody can define, its that the pain centers of your brain become activated due to emotional stress and get "stuck in the on position." If that is where it ended, they may not be doing badly. But old habits die hard, and this is usually followed by talk of "sickness behaviours," "sickness roles," and "enabling family members" as the reason why people with chronic pain can't recover.

Is there anything we, as patients, an do? This is a disgrace to all of us who suffer.

Kismet, you ask the perfect question.  My suggestion is that as many of us as possible read the article and leave comments in the public BLOG of Psychology Today, reporting our own experiences of having been "somaticized", marginalized, and dismissed.  Their ability to influence others in profession is supported by the numbers of people who register their own mistreatment by medical professionals who have labeled them head cases. 

Regards and best,


Check out the Mayo Clinic's approach to chronic pain patients. Their approach: go to a three week long "rehabilitation program," involving cognitive behavioral therapy, graded exercise therapy, stress management and bio-feedback. Its basically the approach to "chronic fatigue syndrome" and fibromyalgia championed by the British psychiatrist Simon Wesley, for whom these syndromes are mostly about poor coping skills.


Although Mayo Clinic may have it's collective head up its collective behind concerning issues of somatization, I think we need to maintain some moral balance concerning the tools it applies.  Cognitive Behavioral Therapy has a record of positive results in helping patients to manage and overcome post-traumatic stress disorder.  Many TN patients report feeling like they've been traumatized by the medical community as well as by the disorder.  We also know that stress and emotional trauma interact with and facilitate breakthrough pain. 

So I would caution all of us not to throw out the baby with the bath water, despite the stink of hypocrisy that we detect in the bath.  When psychological therapy or awareness training gives patients better self-empowerment, lower stress and greater calm, I believe such supports can be constructive and useful. 

Go in Peace and Poiwer


my neurologist told me this has happened to me because of my anxiety disorder I WOULD NEVER DO THIS TO MYSELF!!  i knew right then i was in the wrong place and if i hadn't already known that because of this website i would have blamed it on myself..  Thanku so much for sticking up for us!! 

Big sigh. Thanks so much for this info. I hate saying this but I'm tired of this type of thought process from parts of the medical community. Not only is it a struggle to be in pain every day, and question your self at times on everything about your self; no matter what it seems we are having to fight to be treated as patients and not a "head case". I'm sorry but this news just has me at a loss of words. Wow! Depending on that I would be a total nut job because doctors can not put a finger on why I have what I have, or even prove that I have this craptastic disease because you can't see it. Really? Not only is this a horrible thought process but for some this may be damaging to the doctor patient relationship. I'm sorry but what this is cruelty to a large chuck of intractable pain patients every where. It's sad that any health care provider would even think to label any patient basically a head case because you can not actually see something.

Ill stop on this now before I say something horribly mean (such as any doctor who believes in any religion should then be labeled a head case because religions are based on faith. I know i could say so much worse. My apologizes to anyone I might of offended with that, that is not may intention or do I think that way, but sheese).

Kari, you analogy is spot on. What a shame we don't have a reply platform. As you know many members here DO think some Dr's are nutjobs! By the criteria set out above we All qualify as somatic  very worrying. Surely it is obvious to almost anyone that extreme pain will induce extreme behavior in some of us, and yet we are still sane and genuinely do have TN!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks. Ugh! I really find this up setting because I've had doctors think I'm just another head case before and have had nut job wacko doctors who would use this against me. Really, instead of labeling patients as a head case who are in pain why not try to find them help on getting out of pain, believe what they say is true, and not just think oh well this one got it all in their heads? This seriously just is bitter in my mouth.
I have much to say about this on a variety of levels. For one thing, I have a MS Degree in Mental Health Counseling.
On a personal note, I remember well my young mother in her 40s in screaming pain, being treated poorly by doctors in the hospital. She said she had severe pain. I believed her. They did not. She had lung and bone cancer and died a few months later. Idiots.
the memory of those doctors treating her poorly haunts me. I thought that was an anomaly. Recently, my father, age 79, had stomach pain and told the doctor it was severe. The doctor said he had "stress," did not examine him and gave him meds for GERD. What he REALLY had was a giant cancerous tumor in his stomach and pancreatic cancer. He died a few months later.
So, according to both doctors, my parents had stress and were exaggerating their pain, yet they had very serious health problems and DIED!
Yes, often stress makes pain worse. And there is some thought that certain illnesses like backache, headache and IBS are largely influenced by stress.
But the last thing we needed is to give already jaded, prejudiced, biased doctors an excuse to ignore real pain and not treat patients properly.

Nomad, I am sorry to read about your sad losses. And Dr abuse. Let's not forget, we cannot treat ourselves and we rely on these people to HELP us. Our rare illness causes a lot of stress, yet we may be labelled as Somatic! Really, where do these idiots get off????????????????

What about Dr's with severe pain etc. are they to be labelled somatic?????????????? No, they will be treated well and helped immensely ! I am very cross now Grrrrrrrrrrrrrrrrrrrrr!

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