Fibromyalgia – Chronic Fatigue Syndrome: Siblings-Twins?

“Everybody gets so much information all day long that they lose their common sense”, Gertrude Stein

To write that I am frustrated, angry, and discouraged over the recent hoopla this week in the news from the U.S. Institute of Medicine (IOM) report on Chronic Fatigue Syndrome is to be putting it mildly. As is usual with someone who has CFS and fibromyalgia (FM) I awoke several times last night. During those wakeful periods I wanted to write this blog with great haste in protest for whomever would read this rant from me. I have to admonish my readers that the report is not to be viewed with great enthusiasm. The IOM state that CFS should now to be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such and for which a medication can be taken and our conditions would be cured. But as I have repeatedly written over many years, this cluster of symptoms which make up a syndrome cannot be ‘cured’ with the usual allopathic or alternative medicines. It is far more complex than that. Hunts for viral, bacterial and hormonal causes have been on-going for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?

The first indication of this awakening of the American health experts to the reality of CFS and FMS came to my attention from an article of André Picard, whose articles I respect and admire tremendously. It is from the newspaper The Globe and Mail, Tuesday, February 17, 2015 A11 and is in regard to Chronic Fatigue. While the f word (fibromyalgia) is only mentioned once it is nonetheless aligned with chronic fatigue and I have conjoined the two for many years. In fact there may be quadruplets  involved here if we combine multiple chemical sensitivities  (mentioned by Picard) and PTSD. Happily, Picard calls CFS and FMS a ‘disorder’ in spite of the fact that the U.S. Institute of Medicine has reported CFS as a disease. I continue to call it a ‘dis-ease’  or a syndrome and will not give in to the claim or possibility of a microbe causing disease, in spite of the fact that it does indeed cause secondary illnesses.

The second sighting of this American report was noted February 21, 2015 on the CBC news. So now, after decades of the sufferings of millions of people world-wide, the voices of those of us with several of these invisible, but alike, dis-eases will be legitimated. Furthermore, the ways in which it is to be a bona fide condition worthy of being taken seriously is to call it an actual disease.

So, how closely are CFS and FMS related? I have debated this for many years. I have searched, researched and contemplated about the relationships between the two as well as what I once called Gulf War Syndrome, shell shock, battle fatigue (now called Post Traumatic Stress Disorder) and the elusive Multiple Chemical Sensitivities- all of which are invisible, said to affect women more commonly than men (with the notable exception of PTSD) and cannot be diagnosed with standard medical tests. My conclusion for all of these disorders is the same as it has been since my book and all the blogs I have since written. THESE ARE CONDITIONS THAT ARE CAUSED BY A HYPER-AROUSED CENTRAL NERVOUS SYSTEM IN HIGHLY SENSITIVE PERSONS. These disorders are not exclusive to highly sensitive women but men and children as well.

It is important to discuss the commonalities among the four dis-eases of CFS, FMS, MCC and PTSD. I will do so using the four main ‘symptoms’ discussed in the Picard article:

1) An inability to engage in pre-illness levels of activity that persists for at least six months, accompanied by fatigue. While generally this ‘pre-illness‘ is predominantly applied to CFS,  the other conditions can be not only related to illness but are often attributed to traumatic events such as  car accidents, violence and situations that cause the nervous system to go into hyper-arousal.

2) The worsening of symptoms after any type of exertion (physical, mental or emotional). This symptom, post exercise malaise, is seen as key. This symptom is highly evident in both CFS and FMS but can also be seen with MCC and PTSD.

3) Un-refreshing sleep. Therein lies a commonality among all the disorders.

4) Cognitive impairment. Once again the four dis-eases experience this to a greater or lesser extent. Also known as “brain fog”.

5) The inability to stand upright for other than short periods of time, a symptom known as “orthostatic intolerance” which is extremely common in CFS and FMS and may or may not affect the other two disorders.

While it might seem as though there is a great difference between MCC and FMS to CFS and PTSD, in fact the following is a list of the many symptoms of MCC and PTSD: muscle and joint aches and pains, fatigue, rashes, itching, memory loss and confusion, all of which are common with the other three mentioned syndromes. As with the other disorders, anxiety,  panic, inability to tolerate loud noises, bright lights, excitement, highly reactive to smells, frequent digestive disorders and so on are the exact reported symptoms of all four. In short, all the mentioned dis-eases are similar to such an extent that it is difficult to differentiate among them. They remain controversial, lack any kinds of standard tests to help with treatment and have a gender bias (with the notable exception of PTSD, because of the nature of the higher number of men in the military who have faced combat). One important distinction however, is that people with CFS have been known to recover, unlike FMS sufferers.

These are all Medically Unexplained Illnesses  ( my italics; also see other blogs where I have discussed this issue)with symptoms that are common to all and cannot be separated from one another. As I have discussed repeatedly, the realm of study and research for these conditions should be with the neuroscientists who have made tremendous strides with brain studies regarding pain and the brain, and various strategies for changing the brain. Among them which I seem to be presenting over and over again are: mindfulness meditation, light exercise, talk therapy, deep breathing, avoiding caffeine,  and especially helpful is taking on activities that are new to you, creative, repetitive, innovative and enjoyable which will stimulate new neural pathways in the brain,  and finally paying attention to situations which bring on added stress and living in as calm an environment as possible.

I liken the nervous system of those of us with all these invisible syndromes to an elastic band which has been stretched to its limit. We are never cured of this highly sensitive nervous system. Whether or not it is nature or nurture cannot be proven. We can only work with the hand we have been dealt. Almost, if not all of the hundreds of people, mostly women, whom I have heard from and made comments on this web site, or interviewed personally have been overly empathetic, intuitive, and care givers in one form or another. I have not been surprised at the number of nurses who have FMS and CFS, and gay men, as well as other marginalized people whose lives have been filled with trauma. Some say that after a period of time CFS can be cured without lasting effects. I cannot attest to that, but I can say that those of us with FMS have life long challenges. I confess to not hearing from men in the military. I can only speculate that these are highly sensitive men whose nervous systems have been stretched beyond endurance.

So it seems that the IOM has been tasked by the U.S.  Department of Health and Human Services, the National Institute of Health , the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention , the Food and Drug Administration, the Social Security Administration- all to examine evidence base for CFS. What on earth are they to do? Is CFS and FMS just now being discovered? Have they ever read any of the comments on this and many other websites exploring the commonalities among all of us  world wide, suffering from these conditions which are so closely related? What do they hope to find that wasn’t explored decades ago? It is not a disease! There isn’t a cure for a permanently  hyper-aroused nervous system, always on alert and hyper-vigilant.  We are highly sensitive people who, like Elaine Aron discusses  in her many books, are like canaries in a coal mine. ( Please note: Aron does not equate the conditions  I have just discussed with the highly sensitive person; her extensive work is about the type of people we are and she does not discuss specific disorders associated with this type of person, instead she believes it is a ‘gift’ to be a HSP; the theoretical relationship is mine and I do not want to misrepresent her). We have rich and complex inner lives. We startle easily; we process sensory data differently than other people; our nervous systems differ from the general population. We are highly empathetic  and often intuitive beyond what is usual. This entire trend to label us as a disease entity boggles my mind- when I am not in a state of anger. I have to remind myself to breathe…

 

11 comments

  1. Jacquie Raffile says:

    That’s really hitting the nail on the head. I’ve always been hypersensitive and have suffered far more from the trauma in my life than others would have suffered. FMS is a central nervous system disease and should be considered so by the entire medical professionals.

  2. Barbara Keddy
    Barbara Keddy says:

    Dear Jacquie:
    Thank you for your comments. Oops…did you really mean it is a disease or a dis-ease?
    I have yet to hear from anyone that FMS people are not highly sensitive, and generally that there is or has been trauma in their lives.
    You certainly fit the profile.
    Best wishes,
    Barbara

  3. Imelda says:

    Barbara:

    I wonder if anyone has equated a mother’s post-partum depression with the child’s subsequent reporting of CFS/FMS. Could data be assembled to evaluate? I know that I am sensitive and hyper-aroused to the feelings/intentions of those around me. Specifically when those around me appear to be ready to retaliate or if they are having trouble taking care of themselves.

    It does not seem to be a winning survival strategy. I presume I learned it. It feels to me like the physical suffering is the manifestation of trauma I experienced before I could speak/run/fight to defend myself.

    I wonder the data set that could be put together which may examine parent mental health with offspring’s hyper-vigilance and ensuing CFS/FMS? Would be hard to do because both are self-reporting.

    Keep breathing! The pranayama is my graceful remedy to the pain. So is laughter. So is the resolve to educate the people who are down on me. we’re sensitive and great communicators, right? We’ve got skills….

  4. Jacquie Raffile says:

    I believe it is both learned and genetically related. My mother’s mother often said she felt like she had been beaten up. Emotional hypersensitivity is prevalent in my mother’s family. I had an alcoholic father who was very insensitive to our family. I was full of hatred towards my parents at the age of 5. I was abused in all kinds of ways by my family members, and my first attempt at suicide was age 10. I thought everything was my fault. My mom died of breast cancer/lymphoma as well as two of her sisters. I have cousins on my mother’s side who also have had breast cancer. However, I was the youngest of all to have my first breast cancer at age 40 then again at age 49. I write this to show that all conditions as well as personalities are inherited. There have been studies shown where children who’ve never met their grandparents until later in life realize they have the same likes/dislikes and personality traits.

  5. Barbara Keddy
    Barbara Keddy says:

    Hi Jacquie: I tend to agree…which comes first? The chicken or the egg? The old nature or nurture debate. Difficult to sort through. I tend more toward the ways in which we are socialized as women and how we are brought up, but it isn’t quite as simple as that is it? Thanks for your comments.
    Barbara

  6. Barbara Keddy
    Barbara Keddy says:

    Always good to hear from you Imelda: I was not surprised to hear you are hyper-aroused easily and very sensitive. This seems to be a common denominator among us all! Your point about post partum depression is an interesting one. I had not contemplated that before. Must do some research to see if anything has been written about this issue.
    Best wishes,
    Barbara

  7. Julie says:

    Brilliant post as usual and I would like to mention the elation I felt when I realised that you hold the opinion that these conditions are basically different presentations of the same problem! I have always believed this to be so even though many so called experts have been happy to give me incorrect information which led to much distress and confusion on my part.Thank you again and what a joy it is to feel validated and recognised by people that really know how it feels to try to meet these challenges.God bless.

  8. Barbara Keddy
    Barbara Keddy says:

    Thank you Julie:
    Your comments are appreciated more than you can know. The idea that chronic fatigue is and of itself is an actual disease is not something I am comfortable with. I think it is a dis-ease like fibromyalgia is; not a disease. But then, the researchers are stymied and going round and round trying to find links which don’t exist (n my view). It is so interesting that we are a group of people, primarily women, who are hyper sensitive and care giving, yet the experts want to find something that is missing or diseased within our bodies. Very discouraging! But letters like yours give me hope.
    Best wishes,
    Barbara

  9. Jacquie Raffile says:

    You hit the nail on the head when you said we are hypersentive, both emotionally and physically. I just pray my daughter doesn’t contract this disease. Two nights ago I had an awful time. I mean, the pain was horrific. My husband had to walk away because he is so sensitive that he can’t stand seeing me crying and moaning. I always feel that I must be dying having that much pain. Two oncologists last month told me that I’m on more pain meds than people dying of cancer (maybe because I’m in more pain than people dying of cancer, duh!). I wish I was less sensitive to others pain sometimes, maybe I wouldn’t be in this predicament.

  10. Barbara Keddy
    Barbara Keddy says:

    Ah, Jacquie, you are a most loyal fan! I know exactly what you are experiencing. Given the horrific winter both weather wise and pain wise I can relate to your pain. Night after night I would cry with pain, becoming sleep deprived. In spite of the fact that I know strategies for helping me I was too overwhelmed to do much. I am slowly coming out of it with sun and small signs of spring. But the feelings of hopelessness can wear you down.
    Take care, friend!
    Barbara

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