Thursday, 20 August 2015

Why do so many people have ME or Fibromyalgia?



Before diagnosis, I knew of maybe five people with Fibromyalgia and or Myalgic Encephalopathy (ME)/Chronic Fatigue syndrome (CFS). As a therapist, I had clients who came for single session massage or reflexology who had Fibromyalgia. It was a medical illness I was aware of, I read a medical book about it, knew the anatomy and physiology behind the basics so I was an expert as a professional, right?

Wrong, you don't "get" Fibromyalgia or M.E/CFS until you get it. This is fact and I would challenge any multidisciplinary team professional who claims to understand and empathise, you have no idea how this takes over your life, your ability to perform activities of daily living, the emotional roller coaster it has the person on.

Fibromyalgia and M.E/CFS is such an integral part of my life now I am not shocked in any way that there are so many people with Fibromyalgia. I seem to hunt them out. They are my people, the folks I don't need to explain things to, we just understand each other.

They are my Fibromyalgia Tribe.

I remember back to when I was in my early twenties, I had a miscarriage. When you have been pregnant and felt the joy of a pregnancy then to lose it, the pain is carried around with you. Everywhere I looked women were pregnant, it was almost like there was an influx in my area of pregnant woman and newborns. Obviously, logic prevailed and I realised it was simply my heightened sense of awareness to all things pregnancy. It was forefront in my mind and my mind controlled my line of vision and awareness of society around me.

Within my family no one had heard of Fibromyalgia or M.E/CFS prior to me, now they know all about it, this word is part of our daily vocabulary. When reading newspapers, watching television, browsing facebook if the magic "F" word is mentioned they are aware. Before me, this would go unnoticed within the media, social networking, and society.

Many times people have been asked my why I feel so many people currently have the same illness as I do?

As explained above I created my own heightened awareness so for me I welcome more and more people coming out of the Fibro/ME/CFS closet and joining me.

Many explanations such as diet, lifestyle, chemicals, water pollution, undiagnosed thyroid illness have been put forward as to why the rise in people suffering from Fibromyalgia or M.E/CFS, this "new trendy" illness. Regularly I chat to people who have lived with this debilitating diagnosis for many years some decades, nothing new or trendy about their chronic illness.

Fibromyalgia is not a new illness it has been around for a long time. It was first mentioned back in the early 1800's. It completely baffles me when people say it is a "new trendy illness" like it is something fake and made up. Facts and medical data prove it is a "Real" medical illness {read more here}

What is new is how we share openly our illnesses. This is a new concept within society as people are now encouraged to talk openly and freely, we embrace things rather than hiding them behind closed doors. We write about our medical problems on social media, blogs,  we live our lives in a glass fishbowl for all to see. Prior to social media you never shared things in such a way, we lived insular lives.




There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia or M.E/CFS. Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder. Why do people question this illness so much?


"In the past, FMS patients have been diagnosed as hysterical. It is not hard to understand why: FMS sufferers look well and have normal laboratory test results. Their chief symptom, pain, is quite subjective and is difficult to document. In addition, many FMS symptoms also occur in depression and other psychiatric problems. Chronic pain, for example, can accompany anxiety and depression; clinical depression can cause fatigue, sleep disturbance and pain. Some researchers go so far as to question whether FMS even exists as a physical illness. In one study of childhood experiences, FMS patients were found to be much more likely than others to have experienced maltreatment or victimization."  Source

Maybe the answer is more to do with its acceptance within the medical profession now. They understand the illness so much more, referrals to the Rheumatologists and Neurologists could act as proof of this. There is now a clear diagnosis route in situ rather than wrongly turning people away when the tests return as negative.


There is a greater scope now to accept pain and suffering thanks to Margo McCaffery. Her definition, "Pain is what the person says it is and exists whenever he or she says it does" (McCaffery, 1968) was evolutionary within chronic pain conditions. She lay down the foundations of acceptance for people with pain.

Diet, nutrition, chemicals and additives in food must surely be the reason for this illness? Depending on who you approach you will always find someone who has "cured" themselves via diet alone, interestingly I find they always want to then sell me something. Call me a cynic but I am not swayed by the people claiming to be cured via diet. As a complementary therapist, I am very open to the healing properties of food, superfoods, nutritional values of a balanced diet. Reducing refined sugar does have improvements on symptoms, some claim a gluten free diet helps greatly, low GI foods and their slow release of energy is essential. I do not feel that diet caused my illness so I do not feel that diet alone is the answer, it is very helpful in management, though.

I follow a sugar-free diet and eat healthily, yet I suffer daily and can not get through a full day without sleeping during the waking hours. Some days are harder than others, today has been a bed to couch day, energy levels prohibited anything more than this. Diet alone is not "curing" me or even managing my flares.

"I read on facebook about some woman, (a friend of a friend) she just told the doctor she had Fibro, acted tired and now gets loads of benefits. Maybe that is why so many have that illness you have as it is so easy to fake so you can just be lazy and sit on your arse all day claiming benefits"  

There will always be the negative stories surrounding an illness. Not surprising really as it is an invisible illness, we look healthy so we all must be fakers?

Being a realist, I am sure some have slipped through the net. I have been on social network forums and doubted some people's integrity myself, only to feel awful for judging. I have to trust the medical profession that over time the people wrongly using this horrible condition for their own manipulation will be found out. It would be naive to say it does not happen as it does within any illness.

When I became ill I withdrew into myself. I hid my illness. I hated my illness. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. I did not welcome the diagnosis as working within the medical profession I knew the fingers that would be pointed at me. I pretended my illness was not there, but at the same time, because I was internalizing everything, my symptoms became so much worse. Your mind plays more games. And the cycle continued until I accepted it and came out of the chronic illness closet.



I am viewing it as positive that there are so many people openly outing themselves as being like me, it makes my journey more comforting. It may add to the hater's cynicism but haters always going to hate so I leave them to it. I share my story and hope it encourages more and more to say "Me too" as only we know the degree of our disability. If you feel that all you hear, read about is Fibromyalgia/ME/CFS then super we (people like me spreading awareness) are doing a super job. Pat on the back fellow awareness people.



Here is some food for thought about my nonexistent illness. Source 


"A new study, conducted by the Danish, was just released that measured the degree of disability in MECFS patients (ie: how severe is the illness and where do we fall on the scale compared to other conditions).  The results will probably be shocking to everyone except ME patients…


In a list of 21 medical conditions, including breast cancer, colon cancer, heart disease, renal failure, stroke brain, lung cancer, rheumatoid arthritis, sclerosis, depression, angina, among 10 others…

ME/CFS is listed first in the severity of the disability.   FIRST.


We have the lowest quality of life.  This comes as no surprise to me or probably any of us battling this illness.  I have friends & the family that has battled many of the conditions compared to ME in this report and none of them were as debilitated as my case of ME/CFS.  Not even close.

A quote previously released by the Canadian ME/CFS Consensus reads:


“ME/CFS is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death).”   Canadian ME/CFS Consensus"



Being a socialist girl, I always believe in the power of unity and people supporting each other. I don't see the show of hands for fibro and/or M.E/CFS as a negative. If we all speak out about our battle and how debilitating it is, then more people will understand and greater awareness is good. By saying "me too" it may prevent another person from feeling alone and isolated.



 Love and gentle hugs to you all

Find me also on

Also as admin for the group  WOMEN WITH FIBROMYALGIA

1 comment:

  1. Hear, hear! An eloquent and comprehensive discourse. The stigma attached to CFS / FM must be addressed. No easy feat. I assume that most of us were skeptics ourselves before being stricken - I was. And I still question myself and my condition as a result. We are the pariahs nowadays.
    I only wish I knew but one other sufferer in person to commiserate with. Online support is helpful, but still detached. It's a lonely place.
    But, again, very well stated case of our sorry plight. Well done.

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