“Just because you can’t measure it, doesn’t mean it doesn’t exist.” This was a tweet by the husband of a someone with fibromyalgia (FM). This tweet lit a fire under me. Fibromyalgia is a condition that many physicians believe is psychosomatic, in other words physical symptoms originating from mental or emotional causes. This widespread belief is also true of chronic fatigue syndrome (CFS). Why do we believe that these conditions are psychosomatic? Simply because there is no objective test that proves it exists? How narrow-minded are we? There was a time when we thought the world was flat, because we couldn’t prove otherwise.
Don’t get me wrong. I used to roll my eyes when a patient told me they had CFS or FM. I told my patients that there was nothing wrong with them when the limited panel of “knee-jerk” labs for work-up of fatigue and muscle pain were normal. Then I put them on an anti-depressant and gave them a referral to a therapist. What changed my mind? Two things: 1) seeing patients over and over who had a similar pattern of unexplained, devastating symptoms without any mental or emotional problems and 2) reading the book Osler’s Web, an 800+ page fascinating report about CFS and the doctors who were swallowed up into the labyrinth of searching for a cause. This book was recommended by a patient and forever changed my view of CFS, FM, and Multiple Sclerosis.
Do I know what causes CFS or FM? No, I don’t know the cause but I do know that it is real. I know that it is a dysfunction at a cellular level that affects every system of the body. I do know there are objective findings that have been ignored for decades by mainstream medicine. I do know that patients are devastatingly disabled and unable to work or participate in the lives of their friends and families. Being involved in these patient’s lives has given me a new appreciation for my health that I so often take for granted. And it has inspired me to look outside my scope of knowledge to find a way to help them, rather than turf them to the psychologist or specialist like I used to do. I now look for those objective findings and show them that they are not crazy. I experiment with different strategies to optimize their sleep, nutrition, hypothalamic-pituitary function, and energy levels. Are they cured? No, but if they improve, it is a win.
I believe that someday we will know the cause of CFS and FM, whether it is the XMRV retrovirus, mitochondrial dysfunction, a primary hypothalamic pituitary or some other cause. I believe that CFS, FM, and Multiple Sclerosis (MS) are all spectrums of the same disease process. MS is believable because there are objective findings. CFS and FM are not believable because there is not one specific, objective finding to explain the symptoms. They are invisible diseases. They are not believable because the symptoms are widespread and nonspecific. They are not believable because we don’t look beyond the scope of what we know to be true. And that is the error in our thinking.
After teaching for 22 years, I had to take a total disability with fibromyalgia. I have been well and off medications for over 11 years.
What I did to stop the symptoms so I could go back to work was
1. Balance my hormones
2. Initially balanced brain chemistry
3. Eat a fairly healthy diet
4. Cleared out some toxins
Against all odds, my body got well. I have a passion to help others recover. Best to each of you.
Patricia Stephens
http://www.reversingchronicdisease.com
So glad you are better and able to help others. Thank you for the comments and link.
There is no question that some physicians are the worst enemies of our Canadian healthcare system.
It is good to see a post like this. You are describing situations of real phenomena that we are not yet smart enough to fully understand. Yet many of our colleagues in medicine are too quick to judge patients who have problems like this as “crazy”, “faking it”, or “psychosomatic”. We see it all the time in gastroenterology, with irritable bowel syndrome and other disorders that (for lack of a better term) are called functional bowel disorders. The “search” for “real pathology” astounds me.
Taking the approach that it is not a real condition just because we can’t see it, measure it, or cure it, is absurd. Would you ever tell a patient with a headache that they don’t have anything wrong with them? No, because nearly everyone has had them from time to time, some worse than others.
We simply do not yet have the knowledge to understand all of the underpinnings of these complex symptomatic conditions just yet.
Thank you for your comments. The attitude that these conditions are not “real” and/or psychosomatic is pervasive throughout the medical community. It is good to hear another physician agree that there are complex diseases that are beyond are current understanding.
From my own experience as a recovered CFS patient and from talking to other recovered patients, the illness does indeed appear to be psychosomatic. However that does not mean ‘there is nothing wrong’ or it’s ‘all in your head’. I had very debilitating physical and mental symptoms from this illness that were worse than any other (organic) illness that I have ever had.
If you take an unbiased look at the research into CFS and fibromyalgia, it appears to be triggered by stress which then results in a dysregulation of the stress system that seems to be difficult to recover from.
Ostler’s web isn’t exactly an unbiased source. I would urge Dr Robinson to do more research into CFS and fibromyalgia using pubmed and google scholar. The wikipedia pages on the illnesses are good starting points.
I think the main problem is that society has a bias against psychiatric illness (and psychosomatic illness in particular), so many patients don’t even want to consider that their illness might be caused by stress. Doctors don’t help the situation by saying ‘there is nothing wrong with you’ when there clearly is something wrong.
What I think is needed is a better understanding by doctors of the interactions between mind and body, and spending more time with patients explaining what is happening to them.
I was diagnosed with FM and Myoadenylate Deaminease Deficiency in 1988, after two forearm escemia blood test showed positive with lactate levels off-scale high and amonia levels not detectable… and two deep muscle biopsies that showed muscle enzymes had mutated… the pain and depression are ultra extreme… anyone that does not think this is a real medical problem, please take my pain as your own for a week, and I know you will change your mind…
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