Dr. Ric Arseneau (biography and disclosures)
Disclosure: Dr. Arseneau is the Director of Program Planning and a clinician at the Complex Chronic Diseases Program (CCDP). Mitigating Potential Bias: Recommendations are consistent with current practice patterns.
What I did before
Fatigue, pain, and unexplained symptoms are commonly seen in physician offices, however they are often experienced as “unsatisfying” for doctors. Many of these patients have multiple physical complaints including cognitive manifestation (“brain fog”), and dizziness or lightheadedness. Sleep disturbance is also common. Their symptoms usually get worse if they exert or push themselves. History, physical examination, routine lab investigation, age-appropriate malignancy screen, and screening for obstructive sleep apnea usually fail to identify an underlying cause. Patients continue to feel unwell and are not reassured by the negative work-up. Many see one or more specialists who “can’t find anything wrong,” leading to further patient and physician frustration. Many patients face significant disability and resulting problems with insurance and disability claims. Often, their symptoms are blamed on psychological factors or even misdiagnosed as somatiform disorders. The result can lead to “doctor shopping,” and high health care costs.
Some patients eventually get a correct diagnosis of chronic fatigue syndrome (CFS) or fibromyalgia (FM) – often both. The average patient takes five years to get diagnosed. And, despite arriving at the correct diagnosis, patients are often left hopeless, as many are told, “There is nothing we can do for you.” Many, unsatisfied, will continue on their diagnostic and therapeutic quest.
What changed my practice
Human beings have been described as “meaning-making machines.” The need for understanding and explanation is universal. Our patients need an explanatory model to help them understand their illness. If we don’t provide one, patients will create their own or seek one elsewhere. With the help of the internet, a self-diagnosis of adrenal fatigue, systemic candidiasis, or other chronic infection is not uncommon. This can make future interactions with physicians unproductive.
I have found the concept of Central Sensitivity Syndromes (CSS) helpful in explaining CFS and FM to patients, many of whom worry that these terms imply a psychological cause or are simply used as a catch-all for unexplained symptoms. CSS “comprise an overlapping and similar group of syndromes without structural pathology and are bound by the common mechanism of central sensitization (CS) that involves hyperexcitement of the central neurons through various synaptic and neurotransmitter/neurochemical activities.” (1) For patients, the main idea is that their brain is perceiving amplified or incorrectly interpreted information. Many identify with the commonly associated light, noise, and food or chemical sensitivity.
In addition to FM and CFS – also known as myalgic encephalomyelitis (ME), and systemic exertional intolerance disease (SEID) – other common CCS include:
- Headaches (tension type)
- IBS (irritable bowel syndrome)
- Interstitial cystitis
- Irritable larynx syndrome
- Migraines
- Multiple chemical sensitivities
- Myofascial pain syndrome
- Non-cardiac chest pain
- Pelvic pain syndrome & related disorders
- POTS (postural orthostatic tachycardia syndrome)
- PTSD (post-traumatic stress disorder)
- Restless leg syndrome
- Temporomandibular disorders
I explain that CSS is a family of disorders, an umbrella term to capture the overlapping relationship between these syndromes and the pathophysiological mechanism (e.g., CS) that is common to them.
Genetics and abuse in childhood are predisposing factors. Certain triggers initiate or sustain CS in susceptible individuals. Infections (viral or other), and trauma are known triggers for many CSS conditions probably through the action of inflammatory mediators that activate nociceptive fibers with resultant CS. Autonomic nervous system dysfunction (sympathetic overactivity or parasympathetic underactivity), neuroendocrine dysfunction, immune dysfunction, and non-restorative sleep play key pathophysiological roles. Stress, anxiety, and depression are common in CSS conditions. The relationship is bidirectional resulting in amplification of symptoms if these issues are not addressed.
The recognition of the mutual association among the CS conditions is helpful in their diagnosis and in avoiding costly and unnecessary investigations. Also, these conditions usually respond to the same treatments. Drugs that are known to attenuate CS are the NMDA receptor antagonists including amitriptyline and gabapentin, among others. It is important to note that CSS can coexist with diseases with structural pathology (e.g., rheumatoid arthritis, osteoarthritis, and systemic lupus erythematosus (SLE)).
As a group, CSS, are among the most common reasons patient consult a physician. Doctors can improve patients’ experiences and their own satisfaction by familiarizing themselves and developing some expertise with these conditions. The Mayo Clinic also uses these concepts in helping patients understand their symptoms. A recent paper (3) by this group gives practical tip on when to consider these conditions and how to proceed with the initial evaluation.
What I do now
After an appropriate but limited workup, I make a diagnosis of CFS or FM (often both). I reassure patients that their condition is “real” and not psychological. I explain the concept of CS and demonstrate how it applies to their situation. I give them a one-page handout describing CSS. I also provide them with a copy of a journal article. (1) Although few will read or understand the technically detailed paper, it provides legitimacy to their condition and situation.
My treatment plan includes further education with a focus on self-management (http://www.cfidsselfhelp.org). I also address sleep issues and pain through non-pharmacologic and pharmacologic modalities. Of note, I avoid opioids in this patient population, as they are known to worsen CS in the long-term, not to mention all the other complications. I also listen to and support patients as they struggle with the impact of these conditions on their lives.
I also request that patients’ family physicians refer them to the Complex Chronic Diseases Program (CCDP) at BC Women’s Hospital (referrals need to come from a primary care physician). Here they receive patient- and symptom-centered care with the support of a multidisciplinary team of health care providers. http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-program/default.htm
The CCDP is based on a consultative model and provides clinical and educational services to patients while involving the Primary Care Provider. Most patients spend about a year in the program.
Participation in the program includes an interdisciplinary assessment to make a diagnosis and rule out other causes and co-existing conditions. Each patient receives a detailed and individualized plan. Further workup is carried out when necessary. In addition to medication management, patients can participate in groups including the core group, “Living with Complex Chronic Diseases,” comprising 10 weekly sessions on self-management with a focus on pacing and the energy envelope, mindfulness, and cognitive behaviour therapy. Other program components can include one-on-one or group visits with members of the interdisciplinary team: occupational therapist, physiotherapist, dietitian, social worker, counselor, naturopath, nurses, nurse practioner, family physicians, and specialists. Patients also have access to interventions offered by the program as indicated: acupuncture and trigger point injection. The CCDP is also developing self-management tools and other resources to be accessed on their web site.
References and additional reading
- Yunus, M. B. Fibromyalgia and Overlapping Disorders: The Unifying Concept of Central Sensitivity Syndromes. Semin Arthritis Rheum. 2007; 36:339-356. (View article with CPSBC or UBC)
- Central Sensitvity Syndromes (CSS) handout
- CFIDS and Fibromyalgia Self-Help http://www.cfidsselfhelp.org
- Central Sensitization Syndrome and the Initial Evaluation of a Patient with Fibromyalgia: A Review http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4422459/pdf/rmmj-6-2-e0020.pdf
- Complex Chronic Diseases Program at BC Women’s http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-program/default.htm
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I wonder how likely my male patients are to attend BC Women’s hospital for this? I am sure my male patients have more than their fair share of these symptoms, but due to the unfortunately, still present, gender bias in diagnosis, some conditions are still seen as “women’s issues”.
My hesitation is that this may be used to stratify the “neurotic woman” into sub-categories, rather than addressing this as a human issue. We should have a program run independent to BC Women’s for this to be seen to be true.
Is the self-management program open to anyone with chronic complex disease? I have several patients with chronic non-cancer pain who do not want to attend another ‘pain clinic’. Is the program open to caregivers?
I find it extremely reassuring that specialists in internal medicine are providing such compassionate care to such a disenfranchised and difficult to treat population.
I respect the patient-centred approach which encourages self-management and a careful explanation to patients that they are not at fault for their symptoms. These interventions by themselves are probably therapeutic.
However, I shuddered when I read the phrase “I reassure patients that their conditions are real and not psychological….” After what psychological inventory and thorough assessment of their habits, coping mechanisms, psychiatric symptoms, and relationship functioning are you comfortable providing this “reassurance?”
Your comment also implies a duality that mental and physical symptoms are dissociable and suggests that psychological difficulties are not real and incapable of having physical manifestations. Any of us who know physiology know this is not true (fright inducing tachycardia).
As many of us who have followed these patients in the long-term discover, their physical symptoms and their psychological patterns are often intertwined.
I hope you have specialists in mental health at the Chronic Complex Disease Program so that patients who are struggling emotionally and psychologically and interpersonally (or who will once they are less convinced that they are ill or diseased) or whose central nervous system is hyperexcitable for reasons other than “pure physiology” get appropriate care. Otherwise you are colluding with the false belief many of these patients have that they are ill and this will impede their recovery.
I agree they need a model or explanation and central sensitization is in fact what many of the functional somatic syndromes (somatic symptom disorders/somatoform disorders) have in common. But we needn’t shun the overlap between emotional/psychological patterns and central sensitization. Fear can cause it. We know this because exposure therapies (cognitive-behavioural therapy) improves patients with these conditions (references if you need).
A colleague in C-L psychiatry in McMaster Jon Davine who provides shared care for family physicians in the Hamilton area has a beautiful approach in my opinion. He encourages family physicians to introduce the possibility of a functional or psychogenic aetiology to physical problems to their patients very early on in the diagnostic process (as part of the differential diagnosis) so that these aetiologies are stigmatized less, met with less resistance, communicated about earlier, and not a surprise to the patients when careful clinical examination and diagnostics point to a functional not disease-related cause.
I cringe when you say these patients are mistaken for patients with somatoform disorders? You mean somatization is not even in the differential with these patients?
You must come address our group of a dozen clinicians at UBC in the Neuropsychiatry Program which has combined over a hundred and fifty patient years of experience with somatization because you must be treating a different population.
It’s interesting to me that you would suggest great lengths to avoid associations of “psychological” elements in helping people ‘understand’ their difficulties as “real”. You otherwise point to the implication of psychological factors with a history of child abuse as a predisposing factor, recognize the psychological importance of attaching meaning and explanation in helping people approach the problem, note the psychological elements of anxiety and depression as common emotional reactions to the experience of chronic conditions and health problems which can also have exacerbating effects on symptom severity, and point to the utility of psychological interventions in managing stress and pain and moderating the impact and experience of chronic conditions. Do you not think the impact of psychological elements “real”? You also seem to avoid reference to psychologists as members of a multidisciplinary team. Is there an issue here?
Would be interested to know what your “appropriated but limited work up”is.
Good synopsis of this phenomenon (pain syndromes without physiological findings) and validation of trend toward non-pharmacological interventions and warning away from long term opioid use due to inefficacy, potential for exacerbation of symptoms. Not stated but partly inferred was the warning also of potential adverse effects of long term opioids (addiction, overuse, overdose, decrease in function, etc) that has been endemic in this population.
I would be interested in seeing some numbers about outcomes. Improved? unchanged?
Thank you Ric
Keep up the great work. I have struggled for years trying to help these women in my practice (gynecologist) and then one of your patients several years ago told me about CSS (always listen to the patients!) and the work you and your team have been doing. It was as if the light went on and finally all these women that i knew had a common issue finally had a diagnoses and a way forward. Not an easy way mind you, but much better then multiple surgeries, medications and endless visits to endless doctors most of these patients endure before a correct diagnoses is made.
Sincerely
Liz Joa
I thank the readers for their interest and comments on my TCMP; I appreciate the opportunity to elaborate on these ideas.
The Complex Chronic Diseases Program (CCDP) accepts both men and women into the program. So far, we have not encountered a reluctance by men to coming to BC Women’s Hospital. We do, however, get the occasional question by clinicians about whether our program accepts men.
Our program accepts patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Chronic Lyme Disease, and Multiple Chemical Sensitivities. We deal with pain within the context of these conditions and the related Central Sensitivity Syndromes that are common among these patients. Given our mandate and limited resources, we cannot accept other patients with chronic non-cancer pain into the program. We try to incorporate help for caregivers in some parts of the program (e.g., couples counselling, and Family and Friends Night), but our program is primarily designed for patients.
The avoidance of a psychological emphasis and my use of the term “real” (please note that I put it in quotations), is in large part a reflection of the patient journey. When I explain the diagnosis to patients, they often respond tearily and with relief, “You mean this is real? I’m not crazy.” The Institute of Medicine (IOM), in their recent report on ME/CFS (1), notes that it takes on average five years for patients to receive a correct diagnosis. “Seeking and receiving a diagnosis can be a frustrating process for several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient’s imagination.” (page 1-2) Physician bias towards these conditions is further highlighted by a recent editorial in the Annals of Internal Medicine (2) entitled, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness (note that they did not use quotes around the word real). The fact that a major journal needs to use the word “real” is telling. Some patients are so averse to idea that there is any psychologic component to the conditions, that they criticize our program for using cognitive behaviour therapy (CBT) as a treatment modality despite strong evidence for its use. All illness, and especially chronic illness, has important psychological elements. Many of our patients have depression and anxiety. From a patient perspective it is important for clinicians to understand that the depression and anxiety result from their illness. Too often, symptoms are not taken seriously, and patients have their symptoms attributed to mental illness. The issue is in fact more complex: anxiety, depression, and mental health issues contribute to, and interact with, the experience of illness and symptoms – often leading to a vicious cycle. This is likely even more relevant to patients with Central Sensitivity Syndromes (CSS) given the dysregulated autonomic nervous system and the association of Post-Traumatic Stress Disorder (PTSD). The importance of psychologic and psychiatric approaches in the treatment of medical conditions is under-appreciated. For instance, in patients with cardiovascular disease (CVD), CBT reduced the rate of fatal and non-fatal cardiovascular events by 41% (3) – as big an effect as seen with some medications. Yet, no one would describe CVD as primarily psychological. Like CVS, ME/CFS, FM, and most CSS have a clear biologic basis (e.g., (1)). As a trained and certified group psychotherapist, I appreciate the usefulness of these approaches. CBT and other forms of counselling are an important part of our program. We have a counsellor and social workers. In addition, we work closely with patients’ psychiatrists and community mental health programs to coordinate patient care. We refer to psychiatry as needed.
The diagnosis of ME/CFS, FM, and CSS does not require an exhaustive work-up. For instance, with ME/CFS,the IOM “committee’s most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis of ME/CFS.” The CCDP screening investigations include: CBC/differential, extended electrolytes, renal function, fasting blood sugar, CRP, liver tests, CK, TSH, urinalysis, HIV, HBV, HCV, and FIT (stool for occult blood). We also check that patients are up to date with age-appropriate malignancy screening, and screen for obstructive sleep apnea. Further testing, if needed, is guided by the history, physical examination, or initial lab work.
Long-term opioid use is ineffective and potentially harmful in this patient population (e.g., (4)), yet opioids are commonly used. The CCDP has an “opioid avoidance” policy. We also help many of our patients get off opioids. Our opioid taper protocol and patient handout will soon be available at our new Web site (along with other physician and patient resources):
http://www.bcwomens.ca/our-services/specialized-services/complex-chronic-disease-program
The separation of mind and body is the unfortunate heritage of Cartesian dualistic thinking. The concept of CSS is equally important for clinicians working with functional somatic syndromes. The concepts of “pure physiology” and “pure psychology” are outdated, yet medicine and psychiatry are mired by this dualistic legacy. The term Somatic Symptom Disorder (SDD) itself is a moving target: The DSM V concedes that a “SSD diagnosis does not require that the somatic symptoms are medically unexplained.” (5) Above I account how medicine needs to catch up and acknowledge that psychologic issues are in fact just as “real.” The important work of neurobiologists and neuropsychiatrist has yet to be fully appreciated by health-care workers and patients. Like physics, we need a “Theory of Everything.” My experience has been, that once the biologic underpinning of the illness are validated, patients are more willing to acknowledge and work with the psychologic aspects of their illness; I incorporate a broad approach in my practice. I am encouraged by initiatives like a new combined medicine-psychiatry program at the University of Toronto.
Ric Arseneau, MD FRCPC MA(Ed) MBA FACP CGP
Clinical Associate Professor
Division of General Internal Medicine
Director of Program Planning, CCDP
St. Paul’s Hospital
Women’s Hospital
University of British Columbia
1. IOM
2. Ann Intern Med. 2015;162:871-872. doi:10.7326/M15-0647
3. Arch Intern Med. 2011;171(2):134-140
4. JAMA. 2014;311(15):1547-1555. doi:10.1001/jama.2014.3266
5. http://www.dsm5.org