This thread needed to be moved up for obvious reasons. Have at it. --PalMD
I've been writing quite a bit about "questionable" illnesses, shameless quacks and the like, but there are reasons that people seek out odd diagnoses and cult doctors. They feel crappy, and they haven't yet found someone who can make them feel less crappy.
Of course, some people will never feel OK. That's just human nature. But almost everyone can be helped to feel better in one way or another. What are some of the ways physicians approach difficult-to-treat patients?
First of all, there are many syndromes that involve unexplainable pain. These include fibromyalgia, irritable bowel syndrome, interstitial cystitis, and others. These diseases are painful, but have no clear pathologic correlate, meaning all the tests in the world don't clearly explain why the person is in pain. This doesn't mean the patient is "faking it"---they really do feel miserable. We just don't understand the cause. The other thing about these syndromes is that they are not life or limb threatening. Unlike, say, heart disease, they can hurt without causing physical damage to the body.
Some patients have clear "somatization" or "psychosomatic" disorders...
This label is usually saved for a particular subgroup of patients whose symptoms do not fall into any neat categories, and are fairly clearly not physically based (although they are sensed as physical problems). These disorders are a bit different, in that the patient is completely preoccupied with their symptoms, and often go from doctor to doctor seeking answers that don't exist.
Both of these sets of patients are at risk for some very serious problems. First of all, since they report feeling lousy all the time, but tests are always fine, they are at risk of "cry wolf" syndrome. Plenty of patients have chronic, benign abdominal pain, but one of these days, they may actually have a perforated ulcer, an appendicitis, or some other abdominal catastrophe. It becomes very difficult to decide when to pursue further diagnostic testing in these folks.
Second, they are at risk of being treated as kooks. Doctors like feeling helpful, and since the pain is unlikely to go away completely, and the cause is unlikely to be found, the doctor feels as helpless as the patient, and may become dismissive. This is not the norm. Most primary care doctors deal with these problems every day, and have a great deal of compassion for their patients.
Third, they may undergo many unnecessary tests and procedures, or be sucked in to cult medicine.
So what can be done for these folks? Let's remember, these are often reasonably normal people, who suffer from discomfort, but not from any life-threatening illnesses.
There is some literature out there, but since this is a very diverse group of people, no one rule applies. OK, one rule does apply---they really hurt, and that must be acknowledged (malingerers are usually fairly easy to spot, as they don't have the same chronicity of symptoms). The pain is real, and must be treated as such.
Feeling constant pain can lead to depression (and depression can lead to physical pain), so it should come as no surprise that these patients often respond to psychotherapy and to anti-depressant medications.
Opiate medications should be avoided.
Regular, frequent appointments with a primary care doctor can do a lot of things. It can serve to reassure the patient. It can help the doctor know the patient well, so that "cry wolfism" is less likely. And it can prevent frequent ER visits, specialist visits, and unnecessary tests.
Morgellons patients probably come from many different categories. Some have psychosomatic problems, some somatization, some actual physical pathology, and some have more severe psychopathology. Sorting it out is the job of the primary care physician, and anyone with chronic pain needs to find a compassionate doctor who is willing to build a trusting relationship and take them seriously. This does not mean the doctor should pursue every idea the patient has, but that they should maintain a level of trust that will allow them to help the patient make good decisions, and help reduce anxiety and discomfort. And before the negative comments start rolling in, most internists and family physicians are good at this. Making people feel better is why the chose their profession.
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I've had some very serious problems with somatization where I was interpreting my anxiety symptoms as neurological disorder symptoms and it took away a big part of my life for a while. It's a very scary thing to go through.
I was very sure I had a very serious disease and I would spend a lot of time looking up my symptoms on the internet. I wasn't able to work or function in anything. I couldn't even drive. I did not want to be like that but I couldn't stop thinking about diseases I might have.
I had some doctors that were very good and two that were so bad it was scary. What really helped me was going to a psychiatrist who had a lot of other patients who had similar problems. It really helps to know that you aren't alone.
Sleep apnoea and other sleep disorders are often overlooked, though they are more frequently in the news now and awareness of them is increasing. OSA (obstructive sleep apnoea) is far more common than was previously thought, and is not restricted to fat guys in their later years.
It can take years before a diagnosis of SDB (sleep disordered breathing) is considered as the cause of a patient's series of complaints such as fatigue, depression, hypertension, night sweats, aches and pains, cramps, etc etc.
http://www.cpaptalk.com/ carries a message board and also several articles and links about SDB. The best source of info on this subject on the web imo. Worth perusing if you're interested, and hopefully more and more medics are becoming aware of the human cost of this common and treatable disorder.
regards
Di (Australia)
Very interesting post, Pal.
Hmmm, I was accused of somatization, fired from a doctor's practice because they couldn't figure out what was wrong...biopsy misread as benign (I insisted on the biopsy and was told I was crazy, nothing was wrong--I'd lost 35 pounds, looked like a concentration camp victim and I have a very healthy appetite normally)....
Whooops. two years later, a really big node popped, oh gee, it was lymphoma.... Dr was, uh, kind enough to acknowledge that she took her anger out on me because she could not find a diagnosis....before these symptoms started I rarely went to the doctor except for periodic checkups....
You broke the temporal causality continuum!
Doctors like feeling helpful
Some do. Others are just in it for the money and want to get the patient in and out as quickly as possible. Quite a few have massive egos and will be angry at the patient for not being an easily solvable problem that demonstrates the doctor's wisdom and skill.
There are those patients which for whatever reason a diagnosis can't be pinned down. I just lost my uncle and we still don't know what caused his death. I have to give a lot of credit to his doctors for trying as hard as they could to figure out what was wrong but they just didn't have enough time. Hopefully when the autopsy results come back we'll know, and give us and the doctors who were treating him some answers.
Obviously that's a very extreme case in that my uncle died but imagine a patient who isn't as sick as my uncle was but still has an illness which doctors can't pin down. I can see why someone like that could be desperate for any diagnosis even from a quack. That's why I think people need to be educated more about medicine and science so they hopefully won't pursue useless or even harmful treatments.
My chronic muscle pain began 20 years ago after several bouts of kidney stones and three surgeries. Doctors threw everything at it from antidepressants to vicoden, which just made me feel 'off'. One prescribed antibiotics (what?).
A physical therapist helped me learn to manage the pain more effectively through exercise and a Buddhist friend gave me some very useful perspective. But I don't even bother discussing it with the doctor anymore. Unless they've learned some new tricks it's like talking to a wall. I work, have hobbies, enjoy life, though no air travel. It just is what it is.
Not knocking doctors - they did a fine job after an accident four years ago and another #%$! kidney stone earlier this year. But not everything fits their process, I guess.
Seeing a lot of patients like this these days on my primary care rotation. They are frustrated and frustrating to treat. We even had one who went to the ER and since they were such a frequent flier the ER docs dismissed their complaint without even doing a basic physical exam - and missed the crummy exudate in the back of the throat actually causing major discomfort.
Dammit.
So, what do you do? You take them seriously every time. Look for something that can be treated, if it's there treat it, if not reassure. It's the best we can do.
Many times what is wrong with a portion of this group is that their life is hard and it is making them miserable. This manifests as physical symptoms but the doctor has no capacity to detect physical causes or treat the underlying problem - that the patient needs a new job, needs a new husband/wife, needs relief from economic stress, needs better children that don't steal their social security checks, needs to lose 200 pounds, needs a dog for companionship...something in their life desperately needs to change and a physician doesn't have the tools to fix these kinds of problems (at least not easily). And because their life is going crummy they feel crummy, so they go to the doctor feeling crummy and we can't correct what is making them feel crummy. Those are the toughest patients because you feel compassion for them but you can't run people's lives. You give the best advice you can, offer counseling, offer antidepressants, recommend diet and exercise, recommend quitting smoking (amazing what that can do), offer what you can to address the underlying issues but it's hard to make people change in 15 minutes.
Or you get people like me with chronic, but not serious, issues. My eczema is pretty terrible, and every six months or so I have to bother a doctor because it gets infected and I need antibiotics. Pain in the butt, particularly when you're a student and you end up at a drop-in clinic where the poor doc doesn't know that my eczema just generally looks like that.
My nurse practitioner is really good at listening and reaserching and checking things out. When I was dismissed rudely and told to "stop eating" and "get some exercise" by a doctor who refused my request for a thyroid test, she listened to me and got me treatement.
When I was coming in every year for pneumonia and sinus infections, she noticed a pattern I even hadn't (that I always got sick at the same time of year, and it always progressed the same way, from sniffles to sinus infection to pneumonia), and got me to go to an allergist/asthema doctor to get proper allergy treatment.
While my previous doctor minimized my complaints and assumed I was exaggerating, she realized that I actually don't complain or come in until things get really bad. (she took good notes)
Health care professionals who spend the time to get to know their patients and end up leaving them feeling respected and empowered.
A good doctor has to first be a good listener. He/she should then try to make sense of the complaints to direct an investigation into the real culprit of the symptoms. It is easy to dismiss someones complaints of being tired or having "drainage" with a cough, especially after hearing pretty much the same complaints from most of the patients. After All, who doesn't feel like this, at least some of the time.
If your doctor isn't listening to you, asking pertinent questions and trying to help you at least make sense out of your symptoms (and ultimately resolving them), then it is time to find a new doctor.
It is after doing the due diligence, that sometimes the doctor must start to suspect other, perhaps non-medical causes. Sometimes, when the symptoms do not make physiologic sense, and the patient seems upset out of proportion to the nonspecific symptoms, all it takes is a few simple sympathetic questions. "Is everything ok at home?", or "Is anything else going on that is really bothering you?". In these situations, these simple questions often bring out lots of information that sheds light on the situation. People feel better after talking and having their feelings validated.
If it seems that there still may be underlying organic pathology (such as sleep apnea), I usually will say that we still need to investigate further, but that their stress surely is not helping the situation. This leads to not only finding organic pathology that needs treatment, but also it leads to appropriate psychological counselling/treatment that can definitely be of service.
This post and comments provide a compassionate example of the doctor's perspective on "questionable illnesses." Let me try to give a compassionate response from the perspective of a patient with several questionable illnesses. I have mercury poisoning, low thyroid, wheat senstivity, chemical sensitivity and morgellons.
I was well educated, and in my family, it was well understood that allergies, back pain, skin problems, and aches and pains were probably psychosomatic. For twenty years, I assumed my low grade aches and pains and depresssion were psychosomatic.
But when I suddenly became allergic to chemicals in the 1980's, this psychosomatic theory hit the dust. I learned rapidly that I could feel good avoiding chemicals and bad when exposed to them. I learned that when I cut wheat out of my diet, a twenty year depresssion lifted, along with constipation. So, I was not only able to clear the new chemically caused symptoms, but the old food symptoms also.
Wben I had the mercury fillings taken out of my teeth, I felt a joie do vivre I had not known since early childhood. I stopped being a lazy underachiever and antisocial stay at home and got a good job and started volunteering in the community.
When my chiropractor treated my low thyroid I got more energetic.
When I treated my "morgellons" (black splinters coming from skin, itching and tickling and sores) with vinegar, a candida diet, and mercury removal, the symptoms went from crazy making to a nuisance.
Now I feel that I probably have fewer health problems than most people my age (60). I recovered, not by ignoring my symptoms or psychosomaticizing them, but by taking them seriously, and trial and error treatment. Oh, and I take vitamins and use muscle testing. This is true patient empowerment. If I smashed my body up, I would go to a doctor. But for chronic illness, give me a book, the internet and a chiropractor, naturopath or osteopath.
Conventional doctors like to think they are scientific, but actually, they have become ritualistically, formalistically scientific. They ONLY respect the so called gold standard of medical study. In the real scientific world, there are a range of scientific methods adapted to studying each object of study. Can you imagine making a gold standard study of the cores drilled in antarctica? Or a gold standard study of the furthest galaxies?
The psychosomatic paradigm is the most cruel and useless of theories. It has been around for over 100 years, and has a very poor record of helping patients. First, they don't accept it, and second, even when they do, the psychological help they get doesn't do much to help their symptoms.
If you look to the environment as the cause of their symptoms, rather than the psyche, you can do a lot to help people.
I can only assume that this is one of the more amusing parodies we've seen around here.
What can you say to that? That is a level of ignorance that is nearly impossible to dent.
You ... recommend diet and exercise...
Yeah, Mark, because we fatties don't know we're fat. It's not like society, or doctors, never stop shoving it in our faces.
Interesting post. But I think your use of terminology is a bit odd. Somatization and psychosomatic disorders are not the same thing ("this label"): if it's psychosomatic it is partly somatic. At least to a psychologist there is an important difference between "emotion expressed or interpreted as physical symptom" and "physical symptom caused by emotional problem".
In reply to the person who thought my claims about a better, more outgoing and productive life after getting rid of mercury was a parody, I will say that mercury poisoning is hard to diagnose because of its many different manifestations in different people. However, two relatively common symptoms of mercury poisoning are shyness and "impaired ambition."
In reply to the person who thinks it ignorant to think that a chiropractor can help low thyroid, I don't see the problem. My chiropractor uses chiropractic, kineisiology (a form of acupressure), vitamins, minerals, medicines with bovine organs such as adrenals, liver, thymus, classical and non classical homeopathy, herbal formulas. For the poster to believe that none of these can help low thyroid seems like ignorance to me: ignoring methods of healing outside his comfort zone.
As to my failure to distinguish between psychosomatic and somatization, I plead guilty. I and others with chemical, food and mold sensitivities, along with environmental doctors, have had such good results using environmental manipulation to improve both mental and physical symptoms that the distinctions among the different terms of somatization, somatization disorder, psychosomatic, functional, and so on, seem like splitting hairs to me.
The parody gets even better!
"First of all, there are many syndromes that involve unexplainable pain. These include fibromyalgia, irritable bowel syndrome, interstitial cystitis, and others. These diseases are painful, but have no clear pathologic correlate, meaning all the tests in the world don't clearly explain why the person is in pain. This doesn't mean the patient is "faking it"---they really do feel miserable. We just don't understand the cause. The other thing about these syndromes is that they are not life or limb threatening. Unlike, say, heart disease, they can hurt without causing physical damage to the body."
I suffer from irritable bowel syndrome, and after going to several doctors and taking every anti-spasmatic under the sun, I was referred to another gastroenterologist who pegged my IBS for what I always thought it was... completely stress-related. Stress would trigger my stomach/intestine to freak out, this I always knew, but I was always told that stress doesn't cause IBS. My new doc started me on Effexor and it was amazing!!!! I can eat whatever I want, whenever I want, and I have my life back thanks to this doctor. Yay for being able to eat breakfast and then leave the house 10 minutes later! My bosses want me to have lunch with a collaborator? No problem now!
I know this post is a bit off-topic, but I just wanted to share my success story of "beating" IBS, since for so many years I was told it was impossible. Yes, IBS isn't life-threatening, but I was on the verge of having to quit my job because I couldn't function anymore. I couldn't eat without being in terrible pain, not to mention all the hours lost in the bathroom (how embarrassing) and the weight-loss I started to suffer from because I would fast all day while at work.