Friday, 3 August 2012

I'm not sick but I'm not well


This phrase got me thinking: what happens to people who do not have an identifiable disease, but still feel unwell; when the tests do not reveal any pathology, but they still have symptoms? They get a label, that’s what, because doctors cannot say: “Your tests are normal and you do not have any evidence of an underlying disease process. Further opinions and investigations are unlikely to help, and may lead to unnecessary and potentially harmful treatments”.

I don’t have time for a discourse on medicalisation, but I wanted to ask: What label do these people get? It turns out that it depends on the specialty training of the doctor that sees them.

Most specialties have a diagnosis that can be used to label people with vague, non-specific symptoms without clear underlying pathology. If patients complain of bloating, muscle pains, weakness, fatigue, headaches, dizziness, sore spots, chest tightness, shortness of breath etc., the diagnosis that they get depends on who they see. The following are the diagnoses you get from various specialists:

Gastroenterologist:                Irritable bowel syndrome or dyspepsia
Gynaecologist:                      Chronic pelvic pain or premenstrual syndrome
Cardiologist:                         Atypical chest pain
Rheumatologist:                    Fibromyalgia
Respiratory physician:           Hyperventilation syndrome
Infectious diseases:               Chronic (post-viral) fatigue syndrome
Neurologist:                         Tension headache, migraine, restless leg syndrome
Dentist:                                Temporo-mandibular joint dysfunction
Ear, nose and throat:             Globus syndrome
Allergist:                              Multiple chemical sensitivity
Urologist:                             Interstitial cystitis, painful bladder syndrome
Psychiatrist, GP:                   Depression, anxiety disorder, somatoform disorder

The names for these conditions change over time, and new ones get thrown in to the mix. This list is not exhaustive: the psychiatrists have a lot more diagnoses at their disposal that can easily be retro-fitted to any vague set of symptoms (many more diagnoses than they had during the Rosenhan Experiment). And now sports medicine physicians are diagnosing all sorts of things, often labelled “[INSERT BODY PART HERE] dysfunction” (I love the term “dysfunction”, which basically means “something is wrong” – that’s what makes it a label, not a diagnosis).

So do these ‘diagnoses’ overlap?
Yes, yes they do. This study from the Lancet in 1999 reviewed the subject and found considerable overlap in the diagnostic criteria for these conditions. This is because the diagnostic criteria rely so much on subjective complaints from the patient, rather than the findings from blood tests or X-rays. Not only was there significant overlap between the diagnostic criteria, but the same kinds of patients got these conditions (here), and they were often treated the same way (antidepressant medication and psychological therapies). There is a more accurate label, but it is rarely used (for obvious reasons): Medically Unexplained Symptoms (click here for an overview). More evidence on the overlap of diagnoses between specialties can be found here, here and here.

These conditions used to be called Functional Somatic Syndromes, but the group label changes. Central Sensitivity Syndromes is a recent label used to explain (and group) the syndromes listed above (see here and here). Basically the theory is that these people have nervous systems that are more “sensitive”, so that patients are more likely to complain of pain. I think that this label is at best, poorly supported, and at worst, simplistic, unproven and a backward step in understanding the real reasons for the existence of these syndromes (as psychological and social constructions, or the somatic manifestations of psychosocial influences).

I shouldn’t worry, it looks like that label will soon be replaced by Bodily Distress Syndrome (I am not kidding, here is the link). Nortin Hadler tries not to medicalise this by calling it the Syndrome of “out of sorts”, but this sounds dismissive to the patients, so it will never be accepted.

How do these patients end up with such (apparently) different labels?
Here is how it works. The patient complains of generalised symptoms, and the doctor fits those symptoms into a recognisable syndrome (patterns of symptoms) that fits his area of knowledge and expertise. For example, the rheumatologist will look for tender points: “Does it hurt if I press here? And here?” “Yes!” says the patient who is subconsciously striving for a label to validate and legitimise their symptoms. Once you get 11 tender points you have satisfied the criteria for fibromyalgia.

For gastroenterologists, they will ask questions about changing bowel habits, the patient will answer in the positive, and then the diagnosis is established. All the other symptoms are relegated to peripheral manifestations of the label; in this case, Irritable Bowel Syndrome.

Doctors tends to see what they want to see or what they know, and they guide the patient into known categories of symptoms that fit the syndrome they are expecting, or the only suitable one they know.

Doctors haven’t cornered the market.
I am waiting to meet a patient who came out of a visit to a chiropractor without a diagnosis of spinal malalignment/subluxations that required correction, regardless of what they went in for. As you can see, when we label, we reach for the closest, most familiar labels: the ones we were taught, and the ones for which we provide the treatment. Same goes for every other alternative medicine provider.

Why do patients seek a diagnosis?
(I don’t consider these labels as valid diagnoses in the traditional sense of the word, in that they align with a specific pathological process that can be reliably identified). Firstly, it must be understood that many patients have unexplained pain for reasons other than physical pathology. There are myriad social and psychological reasons for patients to complain of pain and other symptoms (such as job dissatisfaction and unpleasantness at home), and the expression of the symptoms often reflects what is expected, what has been seen or heard before, and what is considered socially acceptable. Seeking medical advice is the social norm for anyone with symptoms, and having a diagnosis established has many implications for the patients, apart from validation of their suffering. But giving them a label may not be the answer to their underlying (psychosocial) problem.

Why do doctors give out these labels?
It is virtually inconceivable for doctors to say to a patient “I cannot find an underlying physical cause for your pain. There may be other psychological and social reasons for your symptoms, and I would be happy to explore that with you, but I do not feel that it would be in your best interests to continue to investigate your symptoms, or refer you for any more opinions or treatments”. Instead they get more tests and, worst of all, they get treatments. Injections, TENS machines, physiotherapy, hydrotherapy, opioid analgesics, and the biggest treatment of them all, surgery. I wish it was acceptable for us to say to a patient complaining of back pain that they have a diagnosis of “unexplained back pain that they cannot currently cope with”, rather than a “ruptured disc” or whatever other finding we lift from the MRI report (there is always something on the MRI scan). The former diagnosis would be more accurate, and less harmful than the latter.

The age-old disease-illness paradigm is alive and well.
We should be treating patients with clear, correctible pathology – those that are sick. However, those that are not sick (no disease) but are not well (have symptoms) may be made sick by medical intervention, and they should not be forced into the disease-illness paradigm. Alternative management strategies should be employed for such patients. Often, talking to the patient and reassuring them that they do not have a serious disease and are unlikely to get worse can be enough. More often it is much harder to undo the long process of conditioning that has led to the current complaints.

As the good doctor Knock said: “Well people are sick people who simply don’t know it—yet.” (link)

For a link to an article describing the extent of the problem, click here.

18 comments:

  1. Fascinating overview here. Thanks for this.

    But as a heart attack survivor, I have mixed feelings about this topic.

    I was sent home from the E.R. with a GERD misdiagnosis - despite presenting with textbook symptoms of crushing chest pain, nausea, sweating and pain radiating down my left arm. Why? Because EKG, troponins, treadmill stress test results were "normal".

    I left the hospital that morning feeling supremely embarrassed for having made a fuss over nothing. Then I proceeded to suffer increasingly debilitating symptoms - but hey! at least I knew it wasn't my heart! A man with the letters M.D. after his name had told me quite clearly after reviewing my "normal" diagnostic test results: "It is NOT your heart!"

    I finally dragged myself back to the E.R. when the symptoms became truly unbearable - this time to a revised diagnosis of "significant heart disease" and emergency treatment for MI.

    So this first E.R. doc's dismissal fits with your description of the ideal: reliance on actual concrete NUMBERS on a test rather than simply hearing the patient's story. Had this E.R. doc Googled my symptoms, he and Dr. Google would have almost immediately come up with the correct diagnosis: MI - not GERD.

    Yet I have personally met other patients since then who are unrealistically convinced that they are indeed having a serious heart attack despite NOT having one - the so-called "cardiophobes" of the world.

    These folks (with symptoms but "normal" cardiac test results) are clogging up E.Rs and making it that much harder for those of us (with symptoms and "normal" cardiac test results) to be taken seriously - until it is too late.

    More on this at: "Are You a Health Seeker or a Disease Seeker?"
    http://myheartsisters.org/2011/06/06/health-seeking-disease-seeking/

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    1. Thanks for the comments CT, and thanks for the link. Your mention of Jan Henderson's Health Culture blog is also appreciated - highly recommended for my readers:
      http://www.thehealthculture.com/2011/04/there%E2%80%99s-more-to-life-than-the-pursuit-of-health/

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    2. Thank you so much for the recommendation, Dr. S. I suspect our interests overlap considerably. Reading your post, I was reminded of an article by Arthur J. Barsky back in the 1980s called ‘The Paradox of Health.’ Part of his argument was that, due to greater preoccupation with health (what I’ve been calling, following Robert Crawford, ‘healthism’), patients tend to scrutinize themselves more closely for symptoms and – reasonably enough -- tend to find what they’re looking for. And that this accounts for an increase in the “worried well” (does the medical profession still talk about the “worried well” or has that terminology disappeared?). Barsky made a few other good points too, ahead of his time: the increased emphasis on health (as in media coverage) creates apprehension and alarm about disease. And patients have unrealistic expectations of medicine, assuming every symptom can be diagnosed and “cured.”

      I enjoyed this post very much. Excellent observation about how each specialty has its default diagnosis. And I appreciate your identification of the social and psychological origins of unexplained symptoms. Fifty to sixty years ago, when the doctor-patient relationship looked more like the Dr. Marcus Welby ideal, psychosomatic symptoms could be alleviated by a doctor who had the time and patience to listen to, understand, and reassure a patient. (Edward Shorter writes about this in ‘Bedside Manners’). Those days are gone. We live in a time when economic constraints require a different set of behaviors. Fortunately, there are still doctors, even young ones, who resist this change. I would recommend the blog of Dr. Jonathan Tomlinson, if you’re not already familiar with it. For example the post ‘What’s in a name? Patients, clients and consumers’ (http://bit.ly/Htukrr).

      I like your identification of how medicine is driven by “our keenness to see it work.” That’s exactly the type of thing that needs to be pointed out and raised to a level of awareness so that we see it in operation. I look forward to reading your others posts here.

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    3. Thanks for your support, and for the references. Yes, I agree with your comments, but as for the Marcus Welby-type of doctor that you mention, I think they still exist but these days they are not taken seriously by patients who are primed to expect high-cost, high-tech, intervention-based solutions and are not even remotely aware of the possibility that psychosocial issues may have a role in their complaints. To explain this concept to patients takes a long time, after which they look at me with a perplexed expression that makes me think: I should have just booked them in for surgery - it would have been easier. This is partly because I get paid to operate, not to talk - a perverse incentive. More on that point in the next post ...

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  2. So true. In 1996, my wife was transported to the ER with severe chest pain. She has Marfan Syndrome, which carries the risk of a dissecting aortic aneurysm. Explaining her condition to the ER doc, she asked how he was going to rule out a dissection. The doc said that he was going to run cardiac enzymes. My wife pushed harder for a CT scan and he agreed. Sure enough, the CT scan revealed a dissection and she was sent in for emergency surgery. The ER doctor couldn't see the other possibilities because her symptoms met his normal paradigm.

    More recently, she dealt with SIX YEARS of headaches. She has dural ectasia associated with Marfan Syndrome and headaches that were severe when upright, went away when lying down, and relieved by caffeine dosing. She also had a pleural effusion of unknown origin. Neurology went down the road of migraines, not even entertaining the idea of a spontaneous CSF leak, despite my wife's suggestion. Neurosurgery blamed a Chiari I malformation. A chance cardiology MRI was read by a radiologist, who suggested that there was a potential hole between the dura and the pleural space. A thoracentesis revealed the presence of CSF. Neurosurgery applied a blood patch, resolving the leak and the headaches. Again, both neurology and neurosurgery were stuck in their paradigms of what they commonly see.

    All specialties are susceptible to the tunnel vision of what is common. Our best doctor experiences have involved doctors that are intellectually curious enough to consider the entire complexity of my wife versus trying to treat a symptom that appears common enough in most circumstances.

    In a similar way, I've been successful at addressing some of my own health concerns through nutrition. Gout is traditionally viewed through a lens of high-purine foods as a causative factor. I had no success with that approach and continued to take a daily medication to limit uric acid production, still suffering from occasional gout attacks. I learned that fructose has a byproduct of uric acid when metabolized by the liver, so I decided to try an experiment: instead of taking a medication to limit uric acid production, I eliminated sugar from my diet, changing nothing else. I got off of medication, and I haven't had a gout attack for over a year. I've even reintroduced limited alcohol, a previous severe trigger, with no problems. My doctor was stunned - it didn't fit his paradigm for gout treatment.

    Patients must act as a partner in the healthcare process: researching, suggesting, questioning. And, in many cases, patients must be willing to make significant lifestyle choices/changes (like I did eliminating sugar) in order to help figure things out. Too many patients want the doctor to fix them by passively prescribing medication or performing a potentially unnecessary surgery without changing a thing about how they live.

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    1. Thanks Rick,
      I particularly agree with your opinion that patients need to take more control of their own health. Sure, take advice from a doctor; hell, take advice from a few doctors because opinions vary. But you have to put the effort in, weigh up that advice, and then make the decision yourself, and you should be comfortable with that decision.

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  3. thanks for sharing.

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  4. I think that there could be some undue faith in medical practice here. While it may be right that patients with these wide range of different symptoms are often treated with anti-depressants and psychotherapy, there is not much evidence that these treatment are more effective than placebo, particularly if the trial has been blinded, or more objective measures of outcome are being used.

    Also, reassuring patients that they do not have a serious disease and are unlikely to get worse, when one does not know what is causing their symptoms, seems rather more like faith based quackery than skeptical medicine.

    This post illustrates how misleading claims and false reassurance seems to trouble patients, particularly given the lack of interest in informed consent in this area of medicine: http://forums.phoenixrising.me/index.php?threads/2003-a-randomised-controlled-trial-of-a-psycho-educational-intervention-to-aid-reco.13326/

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    1. Thanks. Yes you are right about the anti-depressants. The aim of this post was not to say that the treatments were effective, only that they depended on the doctor's world-view.
      I disagree about the faith based quackery and false reassurances. Explaining the absence of abnormalities in someone's scan (say) is just as important as showing them the 'abnormalities'. This 'reassurance' is delivering factual information that they have the right to know, and is often what they are seeking.

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    2. That is a very pandering way to handle a patient who may be suffering from real symptoms. MANAGEMENT of symptoms is what is needed. Not just having them "talk it out" (that is one valid part of management of symptoms, however) but also developing a strategic plan for sleep, eating, the relationship between thoughts/beliefs, emotions, and behaviours, and identifying triggers.

      You claim that the patient is ultimately looking for some sort of data that proves that they are not ill and that their test results are normal-- but that in fact rarely IS enough for someone who is facing chronic fatigue/ fibromyalgia / IBS / "idiopathic"/ unidentified symptoms/ disorders. To simply demonstrate to them that their test results are within normal ranges and do not show issues is only one part of the necessary response; otherwise, they will continue seeking the management of symptoms they need from somewhere else.

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    3. Thanks. I agree that a full explanation of their results / prognosis and reassurance is only one part of the response and often is not enough. However, the "strategic plan" to which you refer needs to be effective. Most strategic plans are providing treatment for treatment's sake, and rely on non-specific therapeutic effects. The cases I am referring to do not have markers of serious underlying disease that are treatable - that is a different story.

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  5. re the prescription of ineffective anti-depressants to patients with unexplained symptoms because of doctor's world-view: that is a pretty terrible thing, and illustrates the danger of routinely medicalising the psychosocial aspects of patient's lives simply because the cause of their symptoms has not been found. Those who promoted this intervention have served patients poorly.

    These sorts of problems also relate to broader concerns from disabled people about the political implications of the adoption of a biopsychosocial model of disability: http://dpac.uk.net/2012/04/a-tale-of-two-models-disabled-people-vs-unum-atos-government-and-disability-charities-debbie-jolly/

    re Reassurance: Certainly, patients would need to be provided with accurate information about any negative testing, but that is quite different from "reassuring them that they do not have a serious disease and are unlikely to get worse". For those suffering from chronic symptoms of an unknown cause, one is unlikely to be able to give such an assurance.

    This recent paper is being used to argue for the rolling out of the intervention tested for psychogenic symptoms, despite the fact that it led to no significant improvement in their primary outcome measure at 6 months, and the control group simply involved usual care and being given psychiatric diagnoses.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149156/

    These are less impressive results than homeopathy gets when up against only UC.

    The first author of the above study, along with those involved with the spinning of results mentioned in the post linked to above were also the three PIs of the largest RCT for psychosocial intervention for CFS, and are currently refusing to release data in the manner laid out in their protocol: https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

    When that trial's sister trial did release data in the manner laid out in it's protocol, it found no significant difference between intervention and control group at their primary end-point: http://www.bmj.com/content/340/bmj.c1777

    One of the troubles with these symptom-based conditions is that people often get caught up in discussions about Cartesian dualism, the stigma of mental health problems, and the importance of psychosocial factors in all human experience. This sort of thing is certainly terribly exciting, but can distract from a more sceptical examination of the raw data, which sadly shows that those adopting a sophisticated biopsychosocial approach to the management of these patients are unable to gain more positive results than one would expect from a homeopath.

    With this area of research it is important to focus on the data, and not get caught up in the discussions, or the opinions of researchers. For example, an analysis of data from actometers used to assess activity levels in 3 RCTs assessing CBT for CFS showed that those who received treatment were no more able to increase their activity levels than the control group. These results were not released until nearly a decade after the publication of the first RCT the data was taken from, which failed to mention the use of actometers. The paper was written in a way which would seem to indicate that CBT was so effective that it was able to work without even needing patients to do more! http://www.ncbi.nlm.nih.gov/pubmed/20047707 Someone looking only at the data would be likely to come away with quite different views than someone who read and trusted the claims being made by those who had developed this treatment.

    Encouraging people to think positively in RCTs will tend to lead to them filling in questionnaires in a marginally more positive manner. That does not mean that promoting positive thinking should be seen as a legitimate medical intervention.

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  6. As a thyroidless patient wrongly diagnosed with fibromyalgia and non specific pain syndrome, I'd like to point out that until doctors stop over reliance on TSH testing, millions of people will languish on anti depressants and opiods, getting sicker and sicker. T3 is the active thyroid hormone that works on almost every cell in the body yet is not routinely tested. Thyroid patients are frequently at the doctor complaining of unexplained fatigue, pain and weight gain yet brushed off with 'your bloods are normal'.

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    1. Thanks, but I don't understand. If you have an underactive thyroid (low T3 and T4 levels) your TSH levels should be abnormally high - that is how thyroid disease is detected. I guess there are always exceptions to the rule, and yes, thyroid disease can cause generalised symptoms and can often be overlooked (not even tested for in the first place).

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  7. Should be, but are not always. There can be Zebras whenever hoofbeats are heard whether it be a thyroid, heart, or nerurohormone. Physicians are no longer taught to look for the Zebras, and patient suffer with innacurate default and meaningless to health diagnoses because of it.

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  8. My doctor never had a clue what was going on with me. They stuck me on different medications guessing that it would help me but they never did a THING!

    A friend recommended Dr. Ben Gonzalez in silver spring, MD and he found out that I had a fibroid the size of a grapefruit! No other doctor even got close!

    He wrote an article about what happens when doctors don’t know whats wrong.

    http://www.atlantismedcenter.com/blog/everything-is-normal/

    Might help you a little:o)

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  9. Maybe the paradigm is changing. I concluded the pain I was suffering was do to a "bad back", according to Dr. Google. I then went to a neurologist who performed a "jump" test with a safety pin across a dermatone and announced that I had a herniated disc. I pondered this for a couple of weeks then went and had an MRI. Sure enough, I had a herniated disc. I was finally satisfied with my dx, though I had an inclining, based on my past health history, that this was psychological in origin and duration. I then began to read the horror stories about thoracic disc herniation, though at the time I didn't know that fully about 40% of the population showed asymptomatic disc herniations in the thoracic region. This set me down a path of panic and frustration worse than the stiff shoulder I woke with one day that sent me down this path. I was told by various doctors of all types that my "injury" was "terrible" and that I had to learn to live with the pain, as surgery in this area was very dangerous. I wondered what "injury". I was not in any accidents and had not suffered any trauma to my back. I was just living a normal life. I did go and talk to the head of neurosurgery at a teaching hospital, and he was at least honest in saying that surgery would not necessarily guarantee that I would have my pain relieved. I was in such a panic by that time I forgot to ask him why, and he never said. I slipped further into a depression, and my anxiety increased ten fold. I avoided painful movement, and gradually withdrew from society. I still had to work, though, and the pain involved with daily movement made me spiral further down the dark path of depression and anxiety. Finally I realized that with my "bad back" I could still bend over and was more flexible than those with a "bad back". Huh? Well, it has been a long struggle back. My muscles eventually loosened and the memory of the various pain positions gradually faded, but only after having to work ten times as hard to overcome the damage done by improper diagnosis.

    My point is, your blog here is spot on.

    If you never get the right diagnosis you will never get the right "cure".

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    1. ... and sometimes we don't know the diagnosis (and never will), which is why we jump to the nearest (most familiar) one. Thanks.

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