Demystifying Fibromyalgia: Learning the Truth About CSS

What is fibromyalgia and is this diagnosis still relevant or should it be grouped under the broad umbrella of Central Sensitivity Syndrome (CSS) along with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome?  Let’s demystify Fibromyalgia and learn the truth about CSS since it really has become a confusing alphabet soup.  

What is Central Sensitivity Syndrome or CSS?

Central Sensitivity Syndrome or CSS can be defined as a disorder of chronic generalized pain, stiffness, fatigue, sleep abnormalities, and cognitive problems such as brain fog, along with mood issues. Further defined as a reduced tolerance to pain and extremes of hot and cold that arise in the central nervous system. 

The neurons in the central nervous system, compromised of the brain and spinal cord cells are “hyper-excitable” or sensitized due to changes in the way cells communicate chemically. The sensitized cells amplify the messages from other senses. For example, touch can feel like pain, normal lighting or sound can be experienced as uncomfortable, and otherwise innocuous smells become intolerable.  

Many people with CSS experience overlapping symptoms as depicted in the diagram below:

Central Sensitivity Syndrome diagram

How Does Central Sensitivity Syndrome Develop?

There can be many factors that contribute to the development of CSS.  There does seem to be a genetic component in that CSS can be found in multiple generations of families. However, the argument could be made that while there may be genetic predispositions, there could also be traumas that carry throughout the generations, as history has a way of repeating itself, particularly in situations of abuse. 

CSS Has Been Tied To Trauma

In many cases, those with CSS can pinpoint a stressful physical or emotional event, such as a car accident, divorce, death in the family, a surgery or infection that they never seemed to fully recover from or brought on unresolvable symptoms. In other cases, there is no clear defining moment but instead may be the result of an accumulation of stressful events over time. 

In addition, researchers have found that a flare in symptoms is often brought on by stressful events, with an increase in cortisol (the stress hormone) in the evening. 

Cortisol levels are normally the highest first thing in the morning and progressively decrease as the day goes on, being the lowest in the evening, allowing restful sleep to ensue.  This phenomenon explains insomnia experienced by those with CSS, as their cortisol levels rise in the evening. 

CSS and Gender

Another contributing factor is gender, in that more women are affected by CSS than men. It is believed that here in the United States, 5% of the population, between the ages of 20-60, will experience some form of CSS. As well, histamine may play a role, as excess histamine can cause joint pain, musculoskeletal or connective tissue pain, chronic fatigue, bloating, constipation or diarrhea, estrogen dominance with painful menstruation, hypotension, rapid heart rate, dizziness, trouble regulating body temperature and insomnia.

CSS and Histamine Intolerance

There is considerable symptom overlap found in those with histamine excess and in those with CSS. In addition, those with histamine excess often suffer from ADHD in childhood and then brain fog, or multitasking problems later in life. For anyone suffering from CSS, it may be worthwhile to explore histamine intolerance as one contributing factor, if not the contributing factor.

The first study suggesting overactive mast cells were pumping high levels of histamine into the body in those with CSS dates to 1990. In 2010, a Spanish study found increased levels of mast cells in the skin of those with CSS. One explanation for the pain common to all that suffer from CSS may be due to the dilation of blood vessels and the deposit of histamine in muscle tissue. 

Histamine is a mediator in many biological processes, including the regulation of the immune system, secretion of gastric acid, inflammation, and neuromodulation. 

The body produces histamine and stores it in mast cells and other biological agents, where it can be available for immediate release after an assault- think bee sting or mosquito bite. Histamine is also generated by microbial activity during food processing, and therefore is present in substantial amounts in food and beverages; particularly leftover food.

For anyone suffering from CSS, it may be worthwhile to explore histamine intolerance as one contributing factor, if not the contributing factor. 

CSS and Excess Glutamate

Another excitatory neurotransmitter (brain chemical) is glutamate, which is also found to be elevated in the CSS population. Thereby, sensory input may be heightened, leading to anxiety. Too, eating disorders can be related to glutamate and are common in CSS. Glutamate is found in monosodium glutamate (MSG), which is a common additive in processed foods and used by many restaurants, not just Chinese restaurants. Anyone with CSS should avoid MSG. Be aware of sneaky sources of MSG such as hydrolyzed protein, yeast extract, monopotassium glutamate, textured protein, soy protein and whey.

Supplements That Can Help Reduce Glutamate:

Balancing glutamate should be the goal. One way to achieve this is by increasing Gamma-amino-n-butyric acid (GABA). GABA calms the brain and is involved with sleep, relaxation, anxiety regulation and muscle function.  To support GABA levels, engage in any exercise, particularly yoga, tai chi and Pilates.  Eating GABA rich foods, practicing mindfulness and meditation, along with eliminating junk food and alcohol can all increase GABA levels. 

Central Sensitivity Syndrome

How is Central Sensitivity Syndrome Diagnosed?

Historically there has been a lack of laboratory or imaging studies available to diagnose CSS. Therefore, practitioners relied on a thorough history of symptoms lasting for at least three months. A physical exam would be conducted to test for pain in tender points. 

A diagnosis would be given only if there was pain in 11 out of 18 known allogenic points. In addition, tests would be done to rule out other conditions such as hypothyroidism, lupus, rheumatoid arthritis, and polymyalgia rheumatic. Essentially, the diagnosis of CSS was given as a label in exclusion of other known diseases or disorders. 

More recently, there have been some promising studies with a diagnostic blood test called the FM/a test. The test collects plasma and peripheral blood mononuclear cells in a blood sample. The test measures the concentration of cytokines with significantly lower cytokines indicating CSS.  

Cytokines are small proteins that control the growth and activity of immune and blood cells and can either be pro-inflammatory or anti-inflammatory. There is evidence showing that certain cytokines are involved in the initiation and persistence of pathologic pain and “hyper-excitability”. 

Also, recent evidence shows that compared to healthy people, those with CSS present with differences on functional MRI whole brain scans. Researchers at the University of Colorado, Boulder conducted a study with 37 subjects diagnosed with fibromyalgia (FM) and 35 subjects without fibromyalgia. They found those with FM had increased pain responses when exposed to a variety of non-painful visual, auditory, and tactile cues, as well as painful pressure.

However, the reality is, other than for research purposes, functional MRI will likely not be ordered by most practitioners who will continue to use symptoms and touchpoints to aid in diagnosis.

What Treatments are Available for CSS?

Not surprisingly, given the root cause of CSS has not been identified, few effective treatments are offered. According to the Mayo Clinic, treatment includes pain relievers, anti-depressants and anti-seizure medications such as gabapentin, as well as physical therapy, occupational therapy and counseling. Given this limited list of pharmaceutical heavy recommendations, nearly 90% of CSS sufferers have turned to alternative medicine. 

This blog has already mentioned several things that may help in the natural spectrum, including avoiding a high histamine diet, a high glutamate diet and raising levels of Gaba with diet and supplements. Too, many people with CSS find that they need to be gluten-free, which is overlap with low glutamate and low histamine diets. 

Additional things to avoid include caffeine, sugar, artificial sweeteners, and dairy. While it may seem as though there is nothing left, there is plenty of food that is low in both histamine and glutamate. Too, those with CSS should make sure that nutrients are optimized, especially Vits A, C, E and D, as well as the B vitamins.

As well, it has been found that eating large meals stresses the gut and can lead to CSS flares. Consider altering your mealtimes and sizes to see if your symptoms improve. One approach is to consume six smaller meals spread throughout the day.

Additional natural treatments include massage therapy, acupuncture, flotation therapy, biofeedback and more. Herbal remedies have shown to be helpful include lemon balm and eucalyptus (used in bath water).  Newer treatments for CSS include ketamine infusions, shockwave and BallancerPro treatments (a device that delivers a precise lymphatic drainage massage). 

Ketamine is an anesthetic that has been in use since the 1950s. Ketamine stops pain while creating a euphoric effect. Unlike many other anesthetics, ketamine does not suppress the heart or lungs, thus it is relatively safe. Another therapy to consider is Shockwave therapy. Shockwave can help break up and heal trigger points, while the BallancerPro can help flush out all toxins and improve the immune system.

Learning the Truth About CSS Should Help Demystify Fibromyalgia

Since fibromyalgia can be defined as a disorder of chronic generalized pain, learning everything that we can about Central Sensitivity Syndrome or CSS can help us understand and demystify fibromyalgia.  Many factors contribute to the development of CSS, and many supplements can help, although it may be best to ensure a proper diagnosis which may include tests to rule other things out.  There are many treatments available, although the comprehensive list included in this blog only offers an overview.  None of the information in this blog should be construed as medical advice, instead, make sure that you always consult with your medical doctor. 



About the Author

Alisa La Liberte, MSN, RN began her career in 1992 in Los Angeles and has served in various roles in hospitals, schools, & clinics throughout the country. She earned her Master of Science in Nursing at UCSF, as a Cardiovascular Clinical Nurse Specialist. Alisa’s strong background in clinical research pushed her to launch Body R-N-R, a wellness practice in Scottsdale, AZ, with technology backed by clinical studies. Read more about Alisa here.

Alisa La Liberte, MSN, RN, Founder of Body R-N-R

Alisa La Liberte MSN, RN

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