Fibromyalgia: The stigma and the truth

NIH, Wikimedia

WASHINGTON- January 24, 2013—Those suffering from fibromyalgia syndrome (FMS) now have undeniable proof that their illness is not psychogenic or psychosomatic (in the mind), thanks to a plethora of new and current findings from the most respected medical research facilities in the U.S.A.

After years of being ignored and told that it was all in their minds, like individuals suffering from obesity before them, FMS sufferers are finally getting the acknowledgment they deserve.

Denied the recognition, compassion and disability benefits they so desperately needed, until recent research emerged, FMS sufferers were subjected to skepticism by family members, employers, friends and the legal profession. Even many primary care physicians turned a deaf ear to FMS sufferers.

Isolated and trapped into forced silence by negative reactions to their ailment, FMS victims were often overcome by fear of asking medical practitioners to address their symptoms and fear of asking family members for help in their day-to-day lives.

The disdain suffered by many with FMS exacerbated the depression they were already experiencing as a result of the condition.

The general confusion surrounding FMS among the medical and other professions may lie in the syndrome’s etiology, the cause or set of causes that gives rise to a disease or condition. Currently, research has been unable to identify a single, specific cause that leads to FMS; instead, FMS appears to have multiple sources of causation.

FMS and obesity: a comparison

The attitudes toward FMS are analogous to traditional attitudes toward obesity.

Historically, it was believed that those who were overweight were lazy overeaters with poor self-control. Friends, family and healthcare professionals advised more exercise and less food.

While poor diet and inadequate exercise are the predominant reasons for body weight issues, hundreds of thousands of overweight people are as active as their slimmer counterparts, and in many cases eat less.

Fortunately for some with ‘metabolic syndrome’ (MS)—the medical term used to describe patients with weight problems—medical research has finally produced answers.

The good news is that in many cases weight problems and obesity arise form a genetic disorder that makes the condition difficult if not impossible to overcome. Dr. Jeremy Cooke maintains there are individuals so genetically predisposed to obesity that they may never lose or keep weight off.

The bad news is that obesity may not be closely linked to individual lifestyle and dietary choices, which can make many individuals’ life-long battle with weight issues a war without victory.

Even for those who do not have a genetic predisposition to having weight problems, being overweight may be attributed to factors other than laziness and overeating. Prolonged increased levels of stress, which cause the release of certain hormones from the hypothalamic-pituitary-adrenal axis, for example, can cause MS.

Aging, genetics, accumulation of stress hormones, sleep issues and several other factors not related to activity or diet can also cause MS. These in turn may lead to diabetes, coronary issues, high blood pressure, chronic pain, depression, stress and a host of other related health problems.

Thanks to the identification of MS as a disease, however, sufferers are no longer called lazy, inactive or just plain “fat” by friends, family, and the medical profession.

Before obesity was identified as a legitimate disease, the emotionally pervasive level of frustration felt by those suffering from it was similar to what victims of FMS are currently experiencing.

There are a number of other similarities between FMS and MS. A single cause has not been identified for either FMS or MS, and it is believed that there are several if not many causes that lead to both syndromes. The resulting symptoms of both are extensive and varied, and the effect of both on health is severe, undeniable and not psychogenic.

FMS as a syndrome

”Syndrome” is defined as a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms that cause an abnormal physiological condition. This definition is the hallmark of FMS.

The causes of FMS range from sleep issues, to central nervous system damage, peripheral nervous system problems, hormonal imbalances and serotonin concerns, all of which may have serious implications.

For example, central nervous system damage may arise from injury, causing disrupted pain processing. Peripheral nervous system problems such as blocked AV shunts can cause an array of pain and body temperature problems. Hormonal imbalances involve hypothalamus-pituitary and thyroid gland functions, and serotonin problems include poor production and inhibited serotonin reuptake.

A variety of treatments are available for FMS, yet each treatment must be individualized to address its particular causes. For example, serotonin may be a primary factor for some patients’ FMS, while endocrine system imbalance or injury may the primary cause for others. For this reason, one single specific treatment is not appropriate to treat all forms of FMS.

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  • Debbie Geo

    The article and research mentioned in Fibromyalgia: The Stigma and the Truth is PURE NONSENSE. They are using FMS as a general label for pain caused by various conditions. That is not real FMS. Real FMS is one single condition. It is not a neuro condition OR an endocrine condition OR injury etc. Those are all different conditions…..they are not all FMS.

    • Ariana

      What is your problem? You say you have extensive experience through research, but I don’t know what kind of research you’ve been reading, but all you’re saying is vague generalizations. I DO have nerve pain – nerve pain that was so severe I hurt literally every single minute and it was unbearable. UNTIL they put me on NERVE PAIN medicine, and although I still have pain, it’s not near as often, and it’s much more bearable. And who are you talking about “They” who are using fibro as a general label? Some docs have been accused of that, but do you really believe there’s some kind of conspiracy so doctors can excuse themselves from seeking a cause so they can produce meds that will help people? They call fibro a syndrome with specific symptoms, because it’s not like us who suffer from fibro get together from all across the country and say, “Hey, let’s all say we can’t sleep, don’t feel rested when we do sleep, have unexplained pain all over, and brain fog so the medical community can be totally perplexed”. NO, that did not happen. Awareness was eventually being raised by doctors themselves that they had these patients with basically the same symptoms, and they could not figure out the cause. I don’t think you know one bit what you’re talking about, cause you believe fibro is not a neuro condition? But you didn’t say what you thought it was either. It sounds like to me you just think it doesn’t actually exist, and so why do you even care to be on here commenting? Do you have any idea how insulting that is to people who suffer from this, and the doctors who are desperately trying to discover a cure? I don’t think you do, and I don’t think you care either. If you’re going to come somewhere like this, don’t post a bunch of hateful, unhelpful stuff, unless you have something encouraging and helpful to post. You think every single one of us have not heard the same ignorance that you have posted? And do you think it matters to those of us who suffer? I couldn’t care less, except to let you know, maybe you ought to work on your articulateness, cause there’s no way you can be doing good research and write the way you do. Leave that for the real professionals. Honestly, people like you disgust me.

  • Debbie Geo

    In my extensive research and experience FMS is HIGHLY OVERDIAGNOSED. Most people actually have something else..and only that condition. I personally know of people falsely diagnosed with it (confirmed) and have been in contact with countless others online who were clearly improperly diagnosed with FMS. NOONE can be sure they really have it until the ONE common cause is found and there is an objective test for it….This article proves that FMS is not properly diagnoses…sure the people studied had pain…BUT FROM DIFFERENT CAUSES…THEY DID NOT ALL HAVE FMS.

    • Ariana

      I don’t think that matters much until the root of the problem is discovered. In the meantime, as far as it presents itself, and as far as a doctor and patient may be able to determine, it may be the best they can do until we DO know the cause or causes. In the meantime, so what if all of them so not have FMS? They are sick, and that’s the closest they know to what is wrong with them. I have also read stories from people who thought they had FMS 20+ yrs, only to discover they had something else the entire time. If it is indeed something else, then it should show up eventually on some kind of test. Why are you so bitter? We still need research and awareness to help those that do have FMS, and to further research so diagnosis of this and other conditions are more accurate in the future. Why do you seem bitter about this? That’s a little ridiculous. You said yourself no one can be sure they have it until a common cause is found, so I believe we all agree on this. It’s actually the subject of this article. And as for me, yes I’ve been diagnosed with it. Who knows, it may turn out to be something else down the road, or I may find out I have something in addition to FMS, but I can tell you that the nerve pain medicine I take has helped tremendously with almost every single symptom I have that is a hallmark of fibro. So, they may still have lots to learn, but they know enough to minimize the suffering of many people.

  • tony

    I believe this is an important Article for people with Fibromyalgia. We
    need to be enabling sufferers, informing them, encouraging them to seek
    help. It’s not by any means an “exact Science” as far as diagnosis,
    treatment, and general understanding, but research is to be encouraged.
    As a sufferer I feel it important to encourage other patients to discuss
    Fibromyalgia with their Dr.’s, and go forward with up and coming
    findings about the “Syndrome”.

  • Kimberly Reese

    This is proof of What Fibromyalgia is. For People have kindness toward us , especially when We take Public Transportation. When someone say something smart I try not to get in a fight . I refused to not being disrespect .