First my apologies for not being more active in the Life with Lupus community. I signed up with all good intentions... and then got swamped with supporting the needs of (now) 3500 people in the Living with TN community, also among Ben's Friends.
That said, I invite the membership here to read a featured thread in your neighbor community that pertains to a problem I believe we all share: many patients with Lupus have an awful time getting an initial diagnosis and appropriate treatment. The American Psychological Association may be about to make your situation vastly worse with respect to standards of practice for medical doctors and supporting counselors and therapists in the healing arts.
The APA is now revising their Diagnostic and Statistical Manual (5th Edition), to be released in May of this year. Among many other changes, a working group of the DSM-5 Task Force has come up with a totally new "disorder" called "Somatic Symptom Disorder," or SSD. Under the diagnostic criteria of this "disorder", anyone who has presented for six months with what the doctor considers "disproportionate" concern for their medical diagnosis and treatment, which disorganizes and threatens daily life, would be a candidate for being assigned a psychiatric diagnosis -- and written off from further medical examination or care as a head case.
Two articles have appeared in Psychology Today, relating efforts to challenge the working group to modify their over-broad criteria, on multiple grounds. Primary among those grounds is that there is no body of validated observational data to demonstrate that such a "disorder" even exists; and if the over-broad diagnostic criteria are applied, potentially hundreds of thousands of patients will have their health care compromised and be personally harmed.
Hundreds of patients with chronic and complex disorders have commented online to the magazine, to advocate for the rejection of this psychosomatic delusional fantasy by the leadership of the APA. Your voices are welcome among that group. You may start with reading a very active thread at Living With TN -- and through that thread, the articles on Psychology Today.
Thank you for the post. My first and maybe only visit to a Rheumatologist was a disaster. I did test positive on ANA, but according to him, not positive enough. I have other symptoms as well. He said, "I don't know what is wrong with you. Maybe it is the early stages of lupus. Tell you what, I will re-test in about FIVE years." Then he says I look tired and depressed and offers anti-depressants. So, in short, I am already labeled as mentally ill. Meanwhile, I live with the fear of kidney failure, etc as the Rheum doc just dismissed me. I have never tested ANA positive until now. Again, I deeply appreciate your post. I am going to share it!
Wish i understood any of this… hard to agree or dis agree with anything that is only understandable for educated people. if someone could wrap all that up and say it in a short simple post that your average Joe with out a PHD could understand i would greatly appreciate it. Ty
I got diagnosed with this back in 1981, but it was by a psychiatriist who didn't know much about lupus. My regular Dr. knew it was lupus. I am hoping they will have to use a psychiatrist to get a psychiatric diagnosis (however cruel this one is), rather than letting rheumies diagnose psychological issues. This would make the "psych" diagnosis less prevalent. I am surprised to see you here, Red. I didn't know you knew anything about lupus. Good article though.
Thanks for adding the discussion to LWL and i've just been checking this "Somatic out" in the UK...as i started out in psychiatric 26yrs ago and never heard of it before...just been reading this and the symptoms they talk about is down to manic depression what i have....so why all the extra CRAP....Just another means of labelling a patient again instead of taking interest in the proper diagnosis.
Many readers of my previous blog listing the ten worst suggestions in DSM 5 were shocked that I failed to mention an eleventh dangerous mistake- that DSM 5 will harm people who are medically ill by mislabeling their medical problems as mental disorder. They are absolutely right. I apologize for my previous failure to attend to this danger and hope it is not now too late to influence the process.
Adding to the woes of the medically ill could be one of the biggest problems caused by DSM 5. It will do this in two ways:
by encouraging a quick jump to the erroneous conclusion that someone's physical symptoms are 'all in the head'; and
by mislabeling as mental disorders what are really just the normal emotional reactions that people understandably have in response to a medical illness. UK health advocate, Suzy Chapman, has closely monitored every step in the development of DSM 5. Her website is the best available resource for finding just about everything you need to know about DSM 5 and ICD-11. Ms Chapman sent me a troubling email that summarizes where DSM 5 has gone wrong and the many harmful consequences that will follow.
I’ll just add a comment or two in support. These are the shoals of clinical medicine – a place where errors are born, rather than exceptions. In his narrative, Dr. Frances gives an example of his missing a brain tumor. It’s the rare physician who can’t tell that kind of story, sometimes with fatal outcomes. I certainly can. Those cases haunt us forever and teach us to be wary of making a pronouncement like the one suggested. Of course there a number of patients who seem preoccupied with symptoms, but they are hardly a uniform group, and they’re a dangerous group because patients in this category get real illnesses too. So besides the dangers of discounting the patients up-front, there’s the ever present danger of insuring they’ll be discounted later when they really need attention. I can’t figure out a reason for including this category. First, as I said, it’s not a uniform group. It contains people who are genuinely physically ill but undiagnosed, people seeking some kind of secondary gain, people whose somatic symptoms mask other more dire mental illnesses, prodromal symptoms of psychosis, etc. But further, why lump them together? The only thing I can think of is to label them so as to limit their drain on medical services, a cost-cutting HMO kind of maneuver. It’s certainly hard to imagine that such a diagnosis has an advantage for patients, and diagnosis is, after all, something one does for patients, not to them. Finally, these patients don’t report being mentally ill and rarely seek psychiatric care. I just don’t see the why of it, only the why not. With criteria as loose as those listed, I wouldn’t doubt that this might have a respectable kappa – be reliable. I would rather question it’s validity [or its wisdom]. And as for "First, do no harm." How can such a made-up diagnosis be ever justified? This is one of those places where our diagnosis by symptom list really falls apart. It elevates the old termhypochondria to the level of a Disorder, implying it is a Disease. Danger! Danger!
To date, it appears that "patients, caregivers and patient advocacy organizations" have spoken up to the APA, but
Psychiatric and non psychiatric clinicians, primary care practitioners and specialists, allied health professionals, psychologists, counselors, social workers, lawyers, patient advocacy organizations
Chris, I'm sorry if my posting seemed a bit too complex. But I don't know how to make a medical issue like this one simpler. A group of specialists in psycho-somatic medicine are proposing a change in standards for their field that is almost certain to get a lot more patients labeled as head cases whose physical problems are somehow "all in their minds". I'm trying to encourage people to stand up to the medical authorities who are letting this happen, and say "Enough already! What you are doing is morally and ethically wrong!"
Sheila, I'd be the first to admit that I don't know a great deal about Lupus. I originally joined here because I've heard from facial pain patients who also have Lupus, and I wanted to learn more. My good intentions got swamped by too much to do in my primary work as a moderator on Living With TN. I Just haven't had the time to study another complex disorder and participate.
You may be swamped with TN but if LWL can help you anytime with problems your having out the blue...just come on your welcome by us all anytime.
It's nice to see you taking the concern of this problem because all it is in the psychiatric field is another mental act which they've brought out to add to the list...christ if they have'nt got enough now already.
This lot drives me mad giving them the rights to treat patients how they want and on labelling them when there may be a proper underlining issue going on (They must have got fedup with the words paranoid to their patients)
Somatization disorder means a person's body takes every stress it has and turns it into a symptom, and according to the info, they are saying doctors will be giving people this label more and more rather than seeking out the real physical cause of an illness. Getting this label just says "There, you're diagnosed, Now go home. I've done my job, I diagnosed you."
Chris said:
Wish i understood any of this.. hard to agree or dis agree with anything that is only understandable for educated people. if someone could wrap all that up and say it in a short simple post that your average Joe with out a PHD could understand i would greatly appreciate it. Ty
I went to see my rheumatolgoist today. I updated her on my condtions of late and reminded her that I seizured on Tramadol and spent five days in ICU(she didn't even have it in her notes) and she was informed by me months ago. She said "you've failed all the drugs and if you can't take anything, then there is no reason for you to come in to see me anymore because I can't do anything for you." She would not test me again even though I had a positive ss-a for sjogrens a few years ago, she said there's nothing you can do for it anyway, and your ANA is negative.
She told me that fibromyalgia causes dry eyes too. They love to lump everything onto the fibromyalgia diagnosis. This is why my opinion of rheumy's are that they are mostly useless, most of the time. At least the four that I've tried have been. I'm glad she didn't say that it was all in my head. That would have been worse. Just venting, thanks.
I totally understand both sides of this argument. As a patient who has been diagnosed with UCDT, lupus, neuropathy and my favorite “you are totally fine” and somatiform disorder over the last ten years I get all of our anger and frustration. As a Licenced Clinical Social worker I am actually a bit offended that we are still using terms such as head case. Their are people that have true somatoform disorder. That being said perhaps if the primary care doctors and rhemotologists, neurologists etc took our complaints and history more seriously we wouldn’t be diagnosed as a “head case”. All illnesses and duffering should be takien seriously no matter how it presents.
I really don't think that some doctors want to be bothered, since it would take too much time and effort for them to research your presentation. They just want that quick and dirty diagnosis, even if they resort to the "head case." No matter how many time I read postings like this, I am shocked and disgusted by it all.
Murky waters everywhere Unfortunately there is a bona fide somatic disorder - and not that uncommon either that has a tremendous impact on a person'd life without having a basis in a medical illness. We with the AI diseases are cursed with an illness that has a vague and prolonged presentation so I can see where we will erroneously get this label.
With respect for you as an individual, Poobie, I think you are seriously mistaken on facts. I've spent years of reading the psychological literature and finding nothing of substance on this issue beyond the unsupported and financially self-interested opinions of practitioners of psychosomatic medicine. I challenge anyone who believes in the mythology of so-called "psychogenic" disease or somatic disorder, to produce even a single set of validated observational data which validates its reality and establishes a mechanism by which emotional distress is somehow "converted" into physical pain. It's not out there, folks. It's just not.
I think a very credible case can be made for the proposition that so-called somatic disorder is a holdover from Freud's long discredited theory of "female hysteria", transformed by Pavlov and others into wild speculations that sounded plausible to them and to their generation, but which do not hold up under any rigorous standard of evidence-based medicine. And I have talked about this case with practicing and published psychiatrists who share my concerns.
I got diagnosed with this back in 1981, but it was by a psychiatriist who didn't know much about lupus. My regular Dr. knew it was lupus. I am hoping they will have to use a psychiatrist to get a psychiatric diagnosis (however cruel this one is), rather than letting rheumies diagnose psychological issues. This would make the "psych" diagnosis less prevalent. I am surprised to see you here, Red. I didn't know you knew anything about lupus. Good article though.
The doctor labels you crazy according to some new criteria from a book (DSM) published by the American Psychiatric Association (APA). People with diseases that are not easily diagnosed can "fall" into this category. This is being questioned whether this diagnosis is valid and should be included in the DSM, because it's too broad and can ruin some peoples lives and access to insurance.
An then, heck! When I first had fibromyalgia and autoimmune symptoms, the doctor gave me prozac. Duh! Didn't even refer me to a shrink. Little did I know?! Who needs the DSM for doctors to have backup when they are dumbfounded and stymied.They do it anyway. But if it's included it can damage many peoples lives.
MY HMO was finally ordered by the state to have a psychiatrist do an evaluation and diagnosis and write the first psych perscription before the patient is put on a psych med.
I get furious when this comes up. Grrrrr. It took two years for my diagnoses. I've read for other folks it has taken years and years.
I quite agree, Ann. And this is one reason why I am active in seeking common cause with others who seek to convince the Board of the APA to withdraw this dangerous and imprecise "disorder" before publication of the DSM-5. I will post additional notes to this thread as the issue develops over the next three months. The DSM-5 is set to be published at the May 2013 national conference of the APA.