Fibromyalgia: The Stigma and the Truth

Printed from Washington Post Communities Digital News
Written by Paul Mountjoy

WASHINGTON- January 24, 2014—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’ —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 metabolic syndrome.

Aging, genetics, accumulation of stress hormones, sleep issues and several other factors not related to activity or diet can also cause metabolic syndrome. 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 metabolic syndrome 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 metabolic syndrome. A single cause has not been identified for either FMS or metabolic syndrome, 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.

Int Fibro

Fibromyalgia Fertile Flora

Having suffered more than usual with tummy issues for the past 8 weeks, I thought I would share this blog post from Ken Lassesen, writing for Health Rising:

(Ken Lassesen has recovered three times from chronic fatigue syndrome (ME/CFS).  In his gut series on ME/CFS/FM he provides his personal prescription for better health through gut flora manipulation. Please note that Ken is a patient, not a doctor; these blogs are for informational purposes only. Please consult with your physician before making changes to your treatment regimen. )

Fertile Flora: The Gut Microbiome and the Infection Connection in Chronic Fatigue Syndrome and Fibromyalgia

Before we look at correcting the microbiome, we should understand better what we are striving to do and why.

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Our fertile (or not so fertile) flora may have impacts far beyond the gut itself

Microbiome is the fancy new name for the gut and other bacterial systems that keeps us alive.  All microbiomes are not the same — in fact, the microbiome you have is connected strongly with your DNA and is actually more unique than your DNA. A recent study of identical twins found that they can be told apart by their microbiome and not by their DNA.

You have around 100 trillion bacteria according to a recent New York Times article which states:

Our resident microbes also appear to play a critical role in training and modulating our immune system, helping it to accurately distinguish between friend and foe and not go nuts on, well, nuts and all sorts of other potential allergens. Some researchers believe that the alarming increase in autoimmune diseases in the West may owe to a disruption in the ancient relationship between our bodies and their “old friends” — the microbial symbionts with whom we co-evolved.

Microbiome Under Attack?

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times with our poor diets, low use of fermented foods and high antibiotic use have not been good for our gut flora

Modern times have not been good for our gut flora. Our modern high carbohydrate and fat diets have been shown to negatively affect the gut microbiome but for increasing numbers of us the negative impact to our gut flora began long before junior had his first french fries.  Research indicates mothers actually pass important parts of their microbiome to their children as they move through the birth canal. Some researchers believe the higher rates of C-sections in the modern era maybe inadvertently contributing to the higher rates of allergy, asthma and autoimmune problems present.

Frequent antibiotic use may have snuffed out some good gut flora in many of us. Nor do we eat the array of probiotic saturated fermented foods our ancestors did.  Given all that it’s no surprise that the diversity of our gut flora compares poorly with those living in more traditional societies with their healthier, more varied diets and reduced C-section and  antibiotic use rates.

Micro in Name Only: Little Bugs With Big Impact

There is already abundant evidence that microflora can have system-wide effects and influence immune responses, brain development and behaviour (Williams, Hornig and Lipkin et. al).

Researchers are still figuring out how important gut flora is to our health but studies suggest the state of our gut can impact many areas, some of which are listed below:

  • inflammatory gastrointestinal disease – reduced levels of a helpful bacteria appear to set the stage for Crohn’s disease
  • cognition – specific bacterial families are associated with poor cognition and inflammation
  • obesity – certain bacteria that metabolize food more completely may increase the risk of obesity/weight) B12 levels (Lactobacillus Reuteri produces most of it)
  • autism – people with autism appear to have a unique gastrointestinal flora that has less variety than healthy individuals.

Autism provides an intriguing example of a dysfunctional gut (increased intestinal permeability, aberrant immune profiles, etc.)  possibly contributing to severe cognitive and emotional dysfunction. Hornig and Lipkin’s Center for Infection and Immunity recently published a study suggesting reduced levels of carbohydrate digesting enzymes may lead to high carbohydrate levels that foster the growth of unhealthy bacteria.  Indeed, RNA sequencing indicated an abnormal gut flora was present (decreased levels of Bacteroidetes, increased Firmicute/Bacteroidete ratio,  Firmicutes and Proteobacteria, and increased Betaproteobacteria.)

A CFIDS Association of America pilot study recently found greatly increased ratios of Firmicute/Bacteriodetes bacteria before and after exercise in ME/CFS. People with ME/CFS also may have deficits in the bacteria that produce B-vitamins in our guts.) These researchers believe changes like these could affect immune functioning, brain development and behaviour.

The Infection Connection

Could an infection have altered the gut flora permanently for some people with ME/CFS?

Could an infection have altered the gut flora permanently for some people with ME/CFS?

It turns out that most infections do temporarily change the microbiome which usually reverts to normal after the infection has passed. In approximately 4-8% of cases, though, this fails to happen and the microbiome remains in a new stable state.

That percentage is pretty close to the percentage of people who come down with a CFS-like state after flu-like infections. Researchers have examined immune, autonomic, endocrine functioning in people with ME:/CFS at the start of infection and afterwards with marginal success. Thus far, immune upregulation and increased symptoms during the early course of an infection and autonomic variables later on are the only unique factors found in people with infections who come down with ME/CFS.

No one yet, however, has examined the most immune-rich substrate of all – the gut. I propose that an infection induced change of gut microflora – which do not revert to normal – plays a key role in chronic fatigue syndrome.

Your Microbiome is Unique to you — and So May Be Your ME/CFS/FM

If my hypothesis on the cause of ME/CFS/FM is correct (a stable dysfunction of your microbiome) then every patient will have a different variation of their unique microbiome! This means that your symptoms will be slightly different because your dysfunctional bacteria are slightly different. This actually goes one step further, the signalling chemicals from these bacteria interact uniquely with your DNA.

Getting a good idea of your gut composition, however, is difficult. Unfortunately currently available medical tests only characterize a small percentage of the species in our gut. Tests done at academic centres (not available at commercial labs) using PCR and DNA fragments are more accurate. Furthermore, many species (~ 80%) cannot be kept alive outside of the body which makes study very difficult.

A good review is at Aging of the Human Metaorganism: the Microbial Counterpart from which the diagram below comes from.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Commercial labs test for less than 2% of the bacterial strains present in our gut.

Altering Gut Flora: More Art Than Science

That means there’s more art to changing the gut flora than science.

On the plus side, it appears very possible – by effectively declaring war against the offending bacteria – and then aggressively repopulating it with good ones, to alter the gut flora. The disruption is not easy — before the arrival of antibiotics- a reset of the gut flora often began by inducing a gut infection (often cholera) to clear the slate, so to speak. Asking a MD to infect you  with cholera to treat CFS today , of course, would be met with complete disbelief ; at one time, it was conventional medical practice and was reportedly successful. (Then again who would have thought we’d be talking about faecal transplants or using worms to alter gut flora….)

To me, any change is better than resignation to the current state of health in CFS. The key items are:

  • Killing off bad species (may have collateral damage on the good species) – antibiotics, herbs, spices
  • Feeding the good species (so they start to dominate) – prebiotics, often FOS, but there are other things
  • Disruption of the new stability (so the old ones have a fighting chance)
  • Importing good species (a.k.a. probiotics of the appropriate type, fermented foods, raw milk and faecal transplants)
  • Starving the bad species (so there are less of them) – no gluten and no sugar diets are likely doing this

I believe the following approaches have the right general approach but may lack the fine-tuning needed for ME/CFS and other disorders. Early reports suggest that ME/CFS patients, for instance, may have a major drop in all E.Coli species but in Crohn’s Disease over 95% of the invasive species are E.Coli. With one, you want to encourage (healthy) E.Coli; with the other, you want to kill off (unhealthy) E.Coli — one treatment plan does not suit all conditions.

These approaches below are correct, I believe, that we should attempt to enhance our gut flora — but they have not evolved enough to address specific gut dysfunctions:

If you are doing any of the above,  I suggest that you keep doing them but consider adding a few modifications which I will be suggesting in my following posts that are specific to the microbiome shift that may be occurring in CFS (which is likely similar to that seen with IBS).

I have yet to see any reports of the above consistently resulting in remission of CFS  but I have seen reports of symptoms reduction. I believe they are likely part of the solution but are insufficient in themselves.

Ken Lassesen has a plan…

Ken Lassesen has a plan…

In his future posts, Ken will share his current understanding and experience in being an anarchist against this dysfunctional microbiome.

Where, oh Where…?

So, I’ve spent most of the day looking at current research and trying to find something to write about; BUT it’s all so BLAH!

203. acupunctureYes, acupuncture has been found to help those suffering from FM – where’s the new information in that?

Yes, marijuana has been shown to help those suffering from FM – where’s the new information in that?

Yes, dysmenorrhea is especially common in FM – where’s the new information in that?

Obesity, tai-chi, hydrotherapy,  shiatsu, reflexology, yoga – it’s all the same…there is nothing new!

I’ve kept reading, checking Facebook, watching tweets and I can’t find anything! And, obviously, I have done nothing else to tell you about. So, I’m setting you a mission: can you find (somewhere, anywhere) something new about FM?

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Bigger is NOT Better

There is a current ad in Australia about the 10,000 tonne woman. This woman has got a bit of weight to lose this year – she is asking for our help. She has been a weight loss consultant for years, so she has seen a lot of people try to lose weight, and the difference support makes. Why are we trying to do it by ourselves? She decided to lose weight with a friend, as a team. Then other people got on board, and then she noticed that the more people shared the weight, the easier it got for everyone.

That’s why she is asking the whole country to join in. Pledge some weight, support someone on their mission, and we’re going to lose 10,000 tonnes together.

biggerI have pledged 30kgs (about 66 pounds) – yes, it’s a lot but it is the amount of weight I have gained since being on antidepressants and FM medication. It is ironic that, although many of these medications cause us to gain weight, excess weight is known to aggravate FM symptoms – such as pain sensitivity and sleep disturbances – and reduce quality of life among patients.

New research now shows, the more severe the obesity, the more severe the FM symptoms, and those who have a body mass index, or BMI, of 35 or higher experience the worst symptoms.

“I’m not surprised,” says study co-author Terry H. Oh, MD, assistant professor of physical medicine and rehabilitation at the Mayo Clinic, in Rochester, Minn. She says that earlier studies have shown that obesity increases symptoms, but there hadn’t been concrete information before this study about whether different levels of obesity affected FM symptoms differently.

In other words, is all obesity the same when it comes to FM?

Help-with-ObesityThe answer is no: Bigger definitely is worse, leading to significantly more severe symptoms. “The severely obese seemed to have the most problems,” says Dr Oh.

The study, published online in the journal Arthritis Care & Research, divided 888 adults with FM into four groups: non-obese (BMI less than 25), overweight (BMI of 25 to 29.9), moderately obese (BMI of 30 to 34.9) and severely obese (BMI equal to or greater than 35). Patients were tracked for three years, underwent a physical evaluation and were asked to fill out health surveys and the Fibromyalgia Impact Questionnaire.

The researchers found – for most symptoms, but not all – that as the BMI category increased, so did the severity of the symptoms. But trends showed most symptoms worsened with higher BMI, but for the most part, the difference in the severity of symptoms was statistically significant for the highest BMI group compared with the other groups. Patients in the highest BMI group, for example, missed work more often because of symptoms and reported more pain, stiffness and fatigue compared with those who were not obese or less obese. Also, the study found that the severely obese patients had more tender points on their bodies and worse physical functioning than the non-obese and less obese.

Why is there a relationship between BMI and the severity of symptoms? Dr Oh and her team write that multiple factors may be at work, including a higher level of pain receptors in fat tissue, elevated levels of pro-inflammatory cytokines, loss of physical fitness and an increase in mechanical loads on the body. And the higher rate of obesity in FM patients “may be caused by a vicious circle of pain and physical inactivity.”

It is important that people with fibromyalgia find a way to stay active despite the chronic pain and fatigue that come with it.

obesity“Those who are severely obese may need more help for weight-loss management,” Dr Oh says. “The basic message is that they have to stay active and exercise by starting slowly and gradually in terms of duration, intensity and frequency. It’s more than saying ‘lose weight.’ They need specific recommendations or to see a dietitian or endocrinologist or get other treatment options.”

Akiko Okifuji, PhD, a psychologist at the Pain Research and Management Center and professor at the University of Utah, in Salt Lake City, conducted earlier research on FM and obesity, which found that obese patients had more pain, less physical strength and more sleep problems.

“Both obesity and fibromyalgia are very different persistent conditions that impact overall health, physical well-being as well as quality of life,” Okifuji says.

She believes people intuitively know what Dr Oh’s study showed – that severe obesity is bad for FM patients. “But it’s good to show it scientifically,” Okifuji says. “Patients need proper nutritional education. It is difficult when you don’t move much. Sometimes food becomes a comfort. They need education on how to deal with that and how to maximize calorie burning while minimizing intake. When dealing with chronic fatigue and chronic pain, it is very difficult to do weight management. The key issue for the scientific and clinical community is to come up with an effective [weight management plan] for people who can’t move that much. It’s a tricky thing.”

Want to check your BMI?

Mine is 39 and I have decided it is time to get myself together! Anyone else with me?