Fibromyalgia 101

By now a lot of people I know know I have “Fibro-something” but they don’t understand what it really is. Would you believe me if I said not just the regular folks in our lives, but everyone including our caregivers, therapists, doctors, and us (the very people who suffer from the illness) do not know enough about Fibromyalgia (FMS). We have vague notions, some broad outlines, few crooked definitions but not a clear, concrete understanding of the condition.

I was the same till I started looking up and reading everything I could get my hands on about FMS. I dived deep into our neurobiology, endocrine and hormonal system, the role of the nervous system, what stress really is, the function of sleep, our energy systems, recovery patterns and the part nutrition and diet play in creating our quality of life (QoL). This over the last couple of years as I continued to experiment and try different protocols that helped me feel better, or in some cases worse, seeing the correlation between the triggers and the body’s response to be in a place where my life is significantly better than what it was 9 years ago, at the time of my diagnosis.

Today I lead a life more or less symptom free, where my rare flares have become slight inconveniences versus the impediments to a good life they initially were. Today I lead a life that I choose. It might have a hiccup or two, with few challenging phases but nothing that I do not know how to handle. The reason I am putting this out here is because I want all those who are dealing with this chronic illness to know there is hope and there are ways to feel better.

Having said that, I am aware there is much more that can be done and my journey continues. I am also aware that there are so many out there that could benefit from this knowledge. I will be doing a series of long read articles packed with information, protocols and some tried tested tips that go beyond the scope and space of social media.

To New Beginnings

What is Fibromyalgia: Short answer, a condition that causes widespread pain, fatigue, tender points, morning stiffness, brain fog and much more. Sometimes it even translates into mental health issues such as anxiety and depression, as well as digestion problems like irritable bowel syndrome (IBS), acid reflux etc. This is the information that you will get through multiple websites while on a google search.

Fibromyalgia is a sort of system malfunction of the body

Now for the long answer. Fibromyalgia is a sort of system malfunction of the body. It includes misbehaving nervous system, immune system, endocrine system and enteric system. In scientific terms it is described as a systematic dysfunction of the biochemical, neuro-endocrine and physiological systems that become the underlying cause of the widespread symptoms (some of which are listed above). What causes this systematic dysfunction is still being debated.

To understand the nature of the dysfunction we first need to understand the way our body is built and what it takes to keep it functioning in sync. The human body is mainly built of bones, muscles, ligaments, tissues and organs. What connects these and keeps everything running is the nervous system. The nervous system communicates through neurotransmitters and hormones which form our endocrine and biochemical system. The fuel to keep the systems going comes from what we consume, our enteric organs (gut, stomach intestines, liver etc) as well as the oxygen from our respiratory systems (lungs and diaphragm).

The nervous system comprises of two parts – Central Nervous System (CNS), which includes our brain and spinal cord, and Peripheral Nervous System (PNS) which refers to all the nerve branches that extend into our body from the spine and do the job of carrying messages to and fro between our brain and body. Both CNS and PNS function constantly and simultaneously.

The PNS is further divided into two parts – Somatic Nervous System and Autonomic Nervous System. The Somatic Nervous System deals with sensory inputs and motor requirements of the body. It relays information from our external environment and our senses to our CNS and carries back instruction from CNS. The instructions could involve reflex movements, as well as voluntary actions.

Our Autonomous Nervous System does the job of keeping the house in order. It functions behind the scenes to run the operations of the body. It keeps our organs going and is responsible for 3 key systems in our body – Parasympathetic Nervous System (Rest & Digest), Sympathetic Nervous System (Fight or Flight) & Enteric Nervous System (connecting the whole digestive group of organs, and its delicate balance). These in turn transmit to our CNS essential information about our overall well being.

Summing up the Nervous System

Central Nervous System – Brain & Spinal Cord – High command of sorts
Peripheral Nervous System – All the other nerves extending in the body, doing the job of gathering information to share with the CNS carry back its instructions
1. Somatic Nervous System – Mobility function, both reflex and voluntary
2. Autonomous Nervous System – Backend and all the main circuitry
  1. Parasympathetic Nervous System – Rest & Digest – related to growth & healing
  2. Sympathetic Nervous System – Fight or Flight – Survival mode, stress response
  3. Enteric Nervous System – Gastrointestinal processing that sometimes functions independent of CNS

Sympathetic Nervous System also known as our “Fight or Flight reaction” controls and fires our ability to react in tight situations by diverting our body resources to more action and movement oriented patterns. Parasympathetic Nervous System sometimes referred to as “Rest and Digest state” helps us fully utilise our energy resources in the well being of our body and systems. This is a state of rest and repair, healing and growth. Unlike the CNS and PNS, the Sympathetic and Parasympathetic nervous systems do not function simultaneously. They are designed to fire individually – so when our body needs fight or flight, it does not have the ability to rest and digest and vice versa. Needless to say they are both crucial and important for our survival. Without Sympathetic (fight or flight) we would not be able to deal with stressful situations, think on our feet, protect ourselves in danger or fight off predators of early human evolution and without Parasympathetic (rest and digest) we would not be healthy, growing, healing or recovering individuals.

Our Autonomous Nervous System does the job of keeping the house in order. A good balance between the Sympathetic and Parasympathetic nervous systems is essential and desirable for good health

For any reason when our Sympathetic Nervous System becomes dominant, our brain activates more power to the limbs, heightens the state of stress (through various hormone and neurotransmitter) which then translates into increased heart rate, quicker breath rates, focused tunnel vision, mental perceptivity and a state of heightened alertness. At the same time the brain de-prioritises the functions of digestive systems, production of growth hormones, bladder or bowel control as well as our sleep cycle. In the short term, the human body is equipped to recover from this state as soon as the perceived danger has passed and activate the Parasympathetic Nervous System. When this happens the priorities are again reversed in favour of digestion, growth, rest, recovery, reproduction etc. A good balance between the two is desirable and healthy.

However, when this Sympathetic dominance becomes a chronic long term phenomenon, various functions of the body start to get messed up. Constant heightened alertness leads to sensory overload. Constant bodily perception of stress begins to trigger digestive problems. Anxiety becomes a chronic state and the body’s biochemical profile is altered. This altered biochemical profile leads to further complication with the system such that it now becomes a ‘chicken or egg’ situation. This state of dysfunction continues to feed itself into a loop till the immune system cracks, and now you have more complicated problems to deal with.

When Sympathetic Nervous System dominance becomes a chronic long term phenomenon, it begins to break down and alter other systems in the human body eventually leading to high pain sensitisation of Fibromyalgia

If this was not enough, the long term activation of the Sympathetic Nervous System begins to affect the relationship between CNS & PNS such that the CNS (or more specifically the Dorsal Root Ganglia – cluster of neurons in the root of the spinal nerves connecting the PNS system to the spinal cord) becomes over sensitised to even the regular information being transmitted by the PNS. It begins to trigger cytokines in an attempt to fight the perceived danger (cytokines are bodies reaction to injury, they rush to the site of perceived harm, causing inflammation to resist movement / activate response for rest / promote recovery) which then cause release of Glial cells (membrane cells responsible for protecting neurons, maintaining stability, provide oxygen and nutrients and attack harmful elements in our CNS & PNS). As the Glia builds up in excess it further heightens the sensitivity of the CNS creating prolonged and exaggerated pain processing – and hence the constant, non specific, travelling pain of Fibromyalgia. The hypersensitive CNS begins to read touch and pressure as pain, it begins to read warmth or cold as conditions to pain, it begins to process pretty much anything and everything as pain and discomfort.

While this is a lot of science, a recent addition to this is the discovery of specific antibodies in those suffering from Fibromyalgia. The presence of antibodies released by the body to fight what it perceives as dangerous intruders could help classify Fibromyalgia Syndrome as an autoimmune disorder, but the bottom line remains the same – a systems dysfunction that begins to fight itself. However the finding could, with lots more research, simplify the diagnosis and life of ‘Fibrowarriors’ by identifying markers that become diagnosable through a blood test. In the current scenario of long drawn, non conclusive diagnosis through the method of elimination that sometimes takes years, it certainly brings hope to those suffering.

The mental toll of a lifelong ‘Invisible Condition’ is perhaps the biggest blow for those suffering from Fibromyalgia

Besides the physical challenges of living a life with Fibromyalgia, the mental toll this condition takes is perhaps the biggest blow for those suffering from it. Termed a life long condition, Fibromyalgia is an invisible illness that can potentially change one’s life. The pain has a debilitating effect and can sometimes be the cause of loss of livelihood, forcing those suffering to abandon their dreams, ambitions, careers and putting heavy stress on all their relationships. This in turn causes immense grief, trauma and anxiety akin to losing someone much loved.

There are, so far, no biological markers, no tests, nothing tangible like in the case of other chronic illnesses to plead the case of this genuine condition, except for the ghost pain and excruciating discomfort. This invisible aspect along with the very low awareness of the condition becomes the reason for the low acceptance of Fibromyalgia as a bona fide illness. Patients themselves find it hard to accept and process. The medical community barely understands it, and with no external visible manifestations, or ways to explain it comes the additional trauma of having little understanding or support from those around. Employers, friends, family, spouses, colleagues and children a lot of times doubt the pain, discomfort and challenges faced by those suffering. Imagine having to convince someone that you really do have a migraine – they can’t see it, they don’t know why it happens, however they have heard of it and are aware that it is an extremely painful headache that lasts long. This last bit of awareness and vocabulary is hereto missing for Fibromyalgia.

The medical community by and large, barely understands it. The awareness, understanding and a standard vocabulary is hereto missing for Fibromyalgia

For most people diagnosed, Fibromyalgia sneaks in slowly as a nagging pain, fatigue, discomfort or inconvenience, which refuses to go away in spite of the rest. As it starts to build, one tends to rely on OTC medication and perhaps even visits a doctor. In this early stage, more often than not, the doctor cannot find anything wrong and prescribes some general supplementation and SOS medication. It is after repeated complaints, multiple tests, consultations with various specialists (a very expensive journey all together) the doctor, having considered the complete history and the number of required pain points (minimum 19), hands out the diagnosis – Fibromyalgia. The feeling ‘if it is nothing else, it might be Fibromyalgia’ leaves one feeling more than a little helpless, frustrated and hopeless. However, in the recent times a more appropriate protocol has been suggested by the European League Against Rheumatism (EULAR) which considers either of the two following approaches for Fibromyalgia diagnosis

19 point consistent pain in all four quadrants of the body for over 3 months
A more updated
1. Widespread pain (rated = or > then 7) along with other symptoms (rated = or > 5 on discomfort rating) for 3 months.
2. Widespread pain (rated = or > then 4-6) along with other symptoms (rated = or > 9 on discomfort rating) for 3 months.
3. Generalised pain in 4-5 region of the body for 3 months

Besides the wide array of symptoms driven by the nervous system, there are a number of external factors that can be responsible for triggering these symptoms. They act as a stimulus for the nervous system to react, and sometimes can be things we aren’t really aware of. To name a few triggers (and this is not an exhaustive list)

Damp and chilly weather conditions
Hot and humid weather conditions
Sudden barometric pressure changes (rain forecast)
Extreme weather (high heat or cold exposure)
Stress
Trauma
Overdoing physical activity
No activity / long period of inactivity (travel / hours of desk job etc.)
Over stretching
Physical pressure (in excess of level of tolerance)
Psychological stress
Sensory overload (being in loud environments, certain fragrances, foods etc.)
Other illnesses and co-morbidities (Seasonal ones such as flus as well as Depression, Ankylosis Spondylitis, Rheumatoid Arthritis, Clinical Anxiety, PTSD, Sleep Apnea, Lupus etc.)

The EULAR further recommends that on diagnosis of Fibromyalgia, the patients be given material and counselling to understand the illness and be guided through the best customised approach of symptom management and relief.

The Management Protocol could include

Prescription medication
Physiotherapy
Aerobic and Resistance exercises
Aquatic Therapy
Occupational Therapy / work management
Cognitive Behavioural Therapy

Prescription drugs are largely chemicals that alter the body’s Serotonin & Norepinephrine levels to help control pain levels. Duloxetine (Cymbalta), Pregablin (Lyrica), Gabapentin (Neurontin), Milnacipran (Savella), Amitriptyline (Elavil), and Cyclobenzaprine (Flexeril) are some of the preferred prescription drugs. Serotonin is our feel good hormone that helps with digestion, sleep, cell communication and by and large responsible for our mood, feeling of well being and sense of happiness. Norepinephrine is a neurotransmitter associated with alertness, action, energy. The body fires norepinephrine in response to stressful situations to aid the body’s response and required action. Balance becomes the critical word for both these brain chemicals, too much could lead to anxiety, panic, depression, high blood pressure etc, while too little can cause lethargy, hopelessness, listlessness, anxiety, low blood pressure etc. However the side effects such as dizziness, sleepiness, weight gain, swelling, nausea etc, might make the patients feel worse before helping them feel better. Most of these medications are habit forming creating a dependency in the body that over time requires increasing the dosage. Many studies have even reported that pharmacological approach in some patients had no effect in pain or discomfort ratings and in others only a placebo effect and therefore advise it only in case of acute pain or severe disability.

Pharmacological approach and intervention is recommended in case of acute pain and discomfort even though some studies have reported either no change or placebo effect in addressing Fibromyalgia pain

But, but here is the thing this whole long background (Science, Diagnosis, Symptoms and Triggers) is building up to – There are things that you can do to feel better. Though there is little conclusive research around Fibromyalgia, the recent studies highlight the role of many management modalities listed above. While science is yet to find the cause and cure, pharmacological treatment predominantly works by suppressing or dulling the symptoms which can only work as a short-term approach. Any improvement in quality of life, pain and other symptoms comes largely through long-term commitment and devising a management practice tailored to individual requirements and capacities. There are no quick fixes, but it is possible to do healing work to restore balance and equilibrium in the body and to greatly minimise the level and instances of flare-ups. In addition to the 6 listed modalities for symptom management and minimising, mindful practices like Yoga, Ti Chi, Qigong have in many instances helped those suffering from Fibromyalgia feel better.

There are no quick fixes but it is possible to heal and restore balance, it is possible to feel better and it is possible to get a semblance of normalcy

Having done the work for myself over the last many years, I however find a 4 pronged approach most beneficial (coming soon, detailed in the next article). It focuses on working and improving imbalances in the 4 aspects that have the most impact as opposed to picking and trying a single management tool / modality at a time. Collectively these 4 buckets deliver lasting, holistic and trackable improvements. Having said that, it is crucial to make small incremental changes instead of large sweeping ones to ensure we don’t stress out an already stressed system further. Before I get into describing and detailing the 4 areas, the first step and one that I cannot stress enough on is documentation.

Documentation of our days becomes the biggest tool of reference when starting our healing journey. Without objective, thorough, detailed documentation it becomes difficult to establish the base line from where we begin work as well as track the progress we’ve made. So on the outset, even if it seems a little tedious I suggest getting in the habit of putting down the details. With smart phones and the various applications they offer, it has become increasingly easy to enter this information and share it with coaches and other healthcare providers. I personally use the Numbers app on my iPhone, and can go back to almost four years and pull out any information including pain levels on a specific day, what I ate, how I slept, how well I hydrated or how much I exercised. Not only is this information a marker of how far I’ve come on my healing journey, but looking at this information threw up specific patterns such as – what kind of weather didn’t work for me or the foods that caused me more pain or even the changes in my sleep quality over the years.

Coming up in the next article – my recommendation on details to track, and the 4 aspects, namely

Movement – Physical rehabilitation of our bodies
Nutrition – How we fuel our bodies for recovery
Sleep – Improving the quality of the time that the body does internal repair work
Mental Health – Equipping ourselves with the most resilient support through this rough patch.

In the meanwhile, take your time to process this information and shoot me any question you have around Fibromyalgia. I will try to revert to the best of my ability.

Disclaimer: I am not a healthcare practitioner, my writing is from the researches and studies I could access digitally and through some of the books referenced below. The article doesn’t give any medical advise. For medical advise please contact you healthcare provider.

Resources: The resources for this article include, but are not limited to the below.

https://www.physio-pedia.com/Fibromyalgia?utm_source=physiopedia&utm_medium=related_articles&utm_campaign=ongoing_internal

https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia

https://ard.bmj.com/content/76/2/318

https://www.scielo.br/j/ramb/a/79qbfpMkYv5m3JGjWd385tt/?lang=en

https://www.researchgate.net/publication/312232818_Management_of_fibromyalgia_practical_guides_from_recent_evidence-based_guidelines

https://www.hindawi.com/journals/prm/2020/6541798/

https://www.sciencedaily.com/releases/2021/07/210701120703.htm

https://www.theguardian.com/society/2021/jul/01/fibromyalgia-may-be-a-condition-of-the-immune-system-not-the-brain-study

https://www.jci.org/articles/view/144201?key=51bf6d85e305f6b62f87#SEC4

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7787228/

Books: