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
- 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