Fibromyalgia and its Siblings: Symptoms, Symptoms, Symptoms!

” Trying to eradicate symptoms on the physical level can be extremely important, but there’s more to healing than that; dealing with psychological, emotional and spiritual issues involved in treating sickness is equally important”, Marianne Williamson

I have become discouraged of late with a fibromyalgia group on Face Book. One person asks about a particular symptom and others write in that they too have the symptom. While it helps to know that others are suffering to the same extent, it leaves the person feeling helpless and a victim to the dis-ease.  This is especially so when we become focused on symptoms. To be fair, sometimes there are often good suggestions as to how to deal with a particular issue, and for the most part it is a forum for support, that can be comforting. But fibromyalgia is more than just a list of symptoms. Not only do we have many of the same challenges among ourselves, but there are other conditions that are alike and can define us as well. We do not have a disease, but a dis-ease and fibromyalgia is one part of a family of  triplets and one other sibling.

Fibromyalgia syndrome (FMS) does not stand alone and it is important first off to discuss how these symptoms are shared with others that are labelled differently, but are the same syndrome. These are the  triplets:

1) Chronic Fatigue Sydrome (CFS- sometimes known as Myalgic Encephalomyelitis, or ME), 2) Post Traumatic Stress Disorder (PTSD) and 3) Fibromyalgia Syndrome (FMS). Yet, there are those who try to separate these three. Furthermore, we have another sibling (which may or not be part of a quadruple, rather than ‘just’ a sibling to the other three) called 4) Multiple Chemical Sensitivities (MCS). Many SYMPTOMS of the four are the same. The personalities of them all are : highly sensitive,  natural empaths,  and a heightened ability to sense emotions and feelings of other people, that is overly emphatic. Most importantly, it is deep seated anxiety that defines those of us with these syndromes. While those who have MCS have a history of asthma, rashes, dry or sore eyes, rhinitis, and blocked nose sometimes more so than the triplets, sleep disturbances , joint and muscle pain, bloating and severe itching  link MCS sufferers to the triad. I wish there was but one word to call these four syndromes.

SYMPTOMS:

The symptoms which preoccupy people with these (this) condition might vary from one person to another but eventually we usually experience them all to some degree.

Last week I read a blog on the FB page about the symptom of difficulty in swallowing.  It certainly can be caused by an inflammation of the throat, it could irritated by gastroesophageal reflex (GERD), for example. But it appears to me that when there is no known cause it is more commonly brought on by extreme anxiety; it was formerly known as “Globus Hystericus”, that it is psychogenic. Fibromyalgia, is, after all, extreme anxiety in highly sensitive persons. Difficulty in swallowing is known to be common among those who are in the midst of great stress and panic. The many symptoms of FMS/CFS/PTSD/MCS often include shortness of breath, and the sensation of a lump in the throat. The common usage of the term ‘lump in the throat’ is one that brings forth an image of someone who feels extreme sadness/ depression/ anxiety for oneself and others.

Another recent symptom posted on the FB page is related to “insurmountable fatigue”, in other words, CFS.  I have seen the film UNREST, which is about chronic fatigue, (otherwise known to the filmmaker as ME) “characterized by post-exertional malaise”. UNREST is available on Netflix. The symptoms  of CFS include physical and mental fatigue, debilitating pain, sleep dysfunction, cognitive dysfunction, sensory sensitivity, and worsening of these symptoms after even minimal exercise, along with a host of other physical challenges (sound familiar those of you diagnosed as someone with fibromyalgia?). I found the film to be very upsetting as it appeared to be focused on having a physiological cause for that which I consider to be psychogenic. The woman portrayed in the film tried one alternative/complementary approach after another and it seemed as though when one new one helped as a placebo effect she would consider herself better . Then after being bedridden for a long period of time  she would get up, walk and hike rather vigorously, finally collapsing. It was in fact, a film intended to politicize CFS, rather than one which points out that for all these conditions a focus on symptoms is counterproductive and reinforces the idea that if one can manage this particular one, life would resume as normal.

WHAT IS TO BE DONE?

These four conditions require certain steps which the individual is responsible for, as there isn’t a magical elixir that can be taken to cure. These are the suggestions for how to improve your quality of life:

  1. Talk therapy and reflection about childhood and the ways in which a person was set up as a child to become vulnerable to generalized anxiety is crucial initially. This anxiety is manifested in many ways- fears, addictions- to alcohol, food, drugs, compulsive shopping/buying and so on- one size does not fit all. When this kind of reflection is in place then the person can readily understand triggers that bring on flare-ups. It is unhealthy to be constantly looking back, but in order to move forward into the moment it is necessary to uncover how it all began.
  2. Light exercise, even a 5 minute walk several times a day.
  3. Practice Mindfulness throughout the day, while eating, drinking, shopping or buying to extreme, not planning for the future, or looking back at the past and instead live in the moment. This is perhaps the most challenging and difficult practice to undertake consistently.
  4.  Laugh often even if you have to force it.
  5. Movement is imperative. Taking to the sofa or bed is not a healthy habit. Light yoga, Chi-Gong, Tai Chi or another form of movement is a way to change that plastic brain to go down another pathway other than one focused on symptoms.
  6. Avoid stimulants such as alcohol, caffeine and sugar.  Maintain a healthy diet.
  7. Undertake a new-to-you hobby that is creative, repetitive and will challenge your brain in new directions. Try to avoid repeating the same hobby year after year but challenge yourself to new ones.
  8. Avoid stressful situations with people who trigger your reactions of itching, pain, fatigue and other unpleasant reactions. If it is a family member reduce your time spent to a minimum. If you are in an abusive situation, end it.
  9. Try to lead a more quiet life style away from large crowds which overstimulate your already over-stimulated central nervous system.
  10. Meditation practice is paramount even if it only for a few minutes each day and increased slowly to at least 20 minutes. BREATHE!
  11.  Avoid over medicating. These conditions are not diseases, they are syndromes that require discipline on your part and taking too many mood altering drugs can cause more brain fog, less desire for exercise and dependencies.
  12. Remember: We are highly sensitive persons, with generalized anxiety and a hyper-aroused central nervous system. No one else can help us as we are the master/mistresses of our own fate. Focusing too much on symptoms is counter productive and never ending!
  13. Find a loving friend/ spouse/ therapist who will give you a massageMost of all stop the intense focus on symptoms but rather practice the numerous ways in which to achieve a better quality of life. For now I must sign off and enjoy this beautiful, sunny day in cold Nova Scotia. Stay warm, be cool!

About Barbara Keddy

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology. I am married, a mother and grandmother living on the east coast of Canada. I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
This entry was posted in chronic fatigue and fibromyalgia, Fibromyalgia, multiple chemical sensitivities, PTSD and fibromyalgia, stress and family members, yoga and fibromyalgia. Bookmark the permalink.

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