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Fibromyalgia expert says misdiagnosis is rampant - Part 2

  [ 5 votes ]   [ 1 Comment ]
By Donna Gregory Burch • www.ProHealth.com • February 23, 2017


Fibromyalgia expert says misdiagnosis is rampant - Part 2
This article was originally published on NationalPainReport.com. It is being republished here with permission from the editor and the author.

Donna Gregory Burch continues her interview with Dr. David Brady.
 
How do you define classic fibromyalgia?
 
Classic fibromyalgia is …a central pain processing disorder. What that means is the problem is in how you process pain [and other sensory information coming into the body]. In fibromyalgia, it’s not processed correctly. It’s sort of amplified, if you will, and over interpreted. Things that would not normally be interpreted as painful are painful, and things that would be mildly painful would be interpreted as significantly painful.
 
In classic fibromyalgia, the way this information is processed is fundamentally flawed deep in the brain and the central nervous system. There are many hypotheses on why that can happen over time, but the classic fibromyalgia patient also has these other elements that are a signature of a central sensitivity disorder. A lot of times we use the word hypervigilance, meaning their nervous system is hypervigilant to impending threat or harm. Their nervous system is always in a sort of fight or flight emergency panic mode, and over time everything amplifies and becomes catastrophic.
 
You see not only upregulation in pain perception, but you see things like anxiety, panic attacks, inability for the nervous system to rest during sleep, to go through all the normal sleep cycles, including restorative stage 3 and 4 delta-wave sleep. People with fibromyalgia may sleep for 14 hours, but they wake up feeling like they’ve never slept because they never go into the deep, restorative stages of sleep because their nervous system won’t rest enough and be secure enough to go into those restorative stages of sleep.
 
[In classic fibromyalgia, it’s also common to have] an upregulated motility or down regulated motility of the bowel, so you get irritable bowel syndrome. You get gassiness, bloatiness, constipation, diarrhea, or an alternation of constipation/diarrhea is very common.
 
You generally are profoundly fatigued, mainly because of the sleep dysfunction, and you have a hard time thinking straight.
 
We look for all of those things in classic fibromyalgia, and generally there’s also a significant stress history. It’s not uncommon that these [patients] with classic fibromyalgia have had significant stress, trauma or difficulties in their early life when their nervous system was learning to deal with their environment. They often had difficult childhoods. They’re children of acrimonious divorces or [had] substance-abusing parents. [There was a lot of] yelling [or abuse]. [They often had] authoritarian parental figures … or sometimes they’re victims of verbal abuse, physical abuse, sexual abuse. I don’t mean everyone with classic fibromyalgia is an abuse victim, but they have a much higher incidence of not exactly the most secure, loving, safe, idyllic upbringing as others.
 
How do you treat classic fibromyalgia?
 
You have to put together a whole plan, and I go through that in my book. You have to deal with it on a multitude of fronts. You have to deal with the hypervigilance of the nervous system. We use meditation. We use things like guided imagery or deep breathing exercises. Sometimes we actually use real-time EEG brain-wave analysis where we, through audio tones and different kinds of relaxation techniques, teach the person how to retrain their brain into more calming states of brain-wave function. We sometimes use heart-rate variability training to help calm the mind and nervous system. That can be done in office on different systems, but also now on apps through your [cell phone or tablet]. Sometimes we have to use some sort of therapeutic intervention with a counselor or psychologist, particularly if there’s been a history of abuse.
 
We also have to clean up their diet. We have to get them eating whole, fresh foods. De-emphasize inflammatory, processed foods. De-emphasize things that they may have a unique immunological intolerance to where it’s fueling inflammation. We do various kinds of tests to find those things. It may be gluten, it may be dairy, it may be other things. It’s really somewhat individualistic.
 
We also then have to work biochemically on the nervous system itself. We use things to normalize or optimize some of the neurotransmitters and hormones. We have to optimize thyroid function. We have to oftentimes rebuild and rejuvenate the stress response and adrenal function.
 
We almost always in classic fibromyalgia have to take a look at and balance out some of the neurotransmitters like serotonin, like GABA, like dopamine. We can do that in various ways with natural interventions with botanicals, nutraceutical precursors, amino-acid therapy. Sometimes we resort to prescription medications in various classes, but usually we try to avoid that.
 
We use a lot of things to modulate serotonin like 5-hydroxtryptophan. We’ll use melatonin to help with deeper sleep. We’ll use forms of GABA. We’ll use precursors to calming neurotransmitters like l-theanine. We’ll use things like inositol and phosphatidylserine, and a lot of calming, sedating botanicals like valerian, passiflora and hops. We’ll use German chamomile. There are a lot of combinations of things we’ll use based on a person’s specific situation and their response to things we try.
 
Why is it important to take a comprehensive approach to fibromyalgia treatment versus just taking pharmaceuticals?
 
The answer to that is simple: Because the pharmaceutical approach in and of itself does not work. That’s not me saying that out of experience, although I can and I do agree with that. That’s major meta-analyses saying this. [There’s a study that] looked at the two major classes of medications that have FDA approval for fibromyalgia. The two classes are basically the antidepressants – the serotonin and norepinephrine reuptake inhibitors – which two of the approved drugs, [Cymbalta and Savella], are in that class, and the alpha 2 delta ligands, which are basically recycled, repurposed antiepileptic drugs. The other drug approved for fibromyalgia, [Lyrica], is in that class.
 
Collectively, even if you make the assumption that the patient is diagnosed correctly with classic fibromyalgia, which is a big assumption, the use of these medications only results in statistically significant improvements in their functional state somewhere around 25 percent of the time. Of those [patients] who are lucky enough to have that beneficial effect, in at least 50 percent of those, the benefits basically fade away after several months of use, so you’re left with a high likelihood of side effects with those medications and not a high likelihood of positive effects.
 
I definitely use those [drugs] in some patients, but to think they’re a viable treatment in and of themselves just goes against all the evidence that we have. There’s no other option than to look at this comprehensively because that’s the only way you get these people better or at least even partially better.
 
You’re a practitioner of functional medicine. Can you explain what functional medicine is and why it might be beneficial for a fibromyalgia patient to work with a functional medicine practitioner?
 
Functional medicine doesn’t concentrate only on diagnosing overt end-stage disease and trying to treat it after it occurs. Rather than waiting for the horse to leave the stable and trying to put the horse back in the stable, we really concern ourselves with upstream interventions and upstream analysis of patients based on their own uniqueness, genomic potential, biochemistry and metabolism, and we try to keep them optimally healthy. We don’t wait until there’s such dysfunction that there’s disease. We look at their function across the spectrum from total health all the way to disease. Conventional medicine looks at either you have a disease or you’re healthy, and that’s just not true. There are many shades of gray between those.
 
In functional medicine, we’re looking at trying to assess you and move you toward your most optimal function, and that’s really what’s required, particularly if there’s a chronic disorder going on like fibromyalgia or another problem that might be inappropriately labeled as fibromyalgia.
 
Functional medicine doctors are probably the best positioned to be able help you through that. They do a lot more testing. They look deeper under the covers if you will for reasons why things are not working versus seeing you for three minutes, getting your list of things you’re complaining about and throwing drugs at you that may mask those symptoms … in a sort of band-aid kind of way.
 
I’m not against drugs. I’m glad we have them. I wouldn’t want to live without them, but I just think somewhere along the line we went off the rails, and whether it’s because of economics or the pharmaceutical industry shaping of the medical system, we got to some crazy point where the only solution is a synthetic drug or surgery or nothing.
 
Functional medicine doctors don’t stop at only those two options. We have a lot more options: life interventions, stress mitigation, changing your diet, making yourself less inflammatory, using a lot of medicinal properties of plants and botanical medicine and amino acids and nutraceuticals and nutritional supplements used at physiological therapeutic levels. There are so many different ways you can nudge the body toward a better state of health short of a synthetic pharmaceutical. We use all of those things when they’re appropriate based on a person’s individual situation.
 
What’s the best way to find a functional medicine practitioner?
 
Probably the best way is to go to the website for the Institute for Functional Medicine. There’s a “find a practitioner” tool [where] you can put in your zip code and find various practitioners who have training in functional medicine.
 
That being said, I’m not trying to imply that every functional medicine-trained physician would have the kind of expertise and knowledge in fibromyalgia that I do because they don’t. However, you’ve got a much better chance they’ll help you navigate through some of this maze than just your standard family physician.
 
Are you accepting new fibromyalgia patients?
 
I am in clinical practice in Fairfield, Connecticut, at Whole Body Medicine, and I do accept new patients. I have to see patients in my office the first time and establish them as a patient, and afterwards I can follow up with them remotely through phone, Skype and other types of management.



Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies. 



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Article Comments Post a Comment

another critique - I am afraid
Posted by: IanH
Feb 27, 2017
I don't particularly like criticizing articles but some, like this are full of holes - some of these holes are leading us all down a wrong track.

"Things that would not normally be interpreted as painful are painful, and things that would be mildly painful would be interpreted as significantly painful."

This is wrong and it is importantly wrong because it leads to false or biased conclusions about FM. The state of our biochemical knowledge about FM is still poor and we cannot yet conclude that central sensitization (c.s.) is the essence of the illness. People with FM do NOT experience sharp pain any greater than normals. That is, if a person with FM cuts themselves, the sharp pain is felt as normal but if the person with FM strains a muscle the pain is felt more strongly and persists much longer than normal.

As pointed out in this article, "misdiagnosis is rampant" - it is, not because clinicians get it wrong but because clinicians, along with everybody else do not know what FM really is, if it should even exist as defined. If we define FM as c.s. and we go looking for central sensitization then we will find it - but that does not prove that these symptoms have c.s. as their root cause. I am not saying that sensitivity to pain does not exist. Some people who have chronic pain do become more sensitive to pain. Some do not.
Consider ischaemic (ischemic) pain
"Ischaemic pain is unpleasant, often excruciating pain associated with decreased blood flow caused by mechanical obstruction, constricting orthopedic casts, or insufficient blood flow that results from injury or surgical trauma. Ischemic pain caused by occlusive arterial disease is often severe and may not be relieved, even with narcotics. The individual with peripheral vascular disease may experience ischemic pain only while exercising because the metabolic demands for oxygen cannot be met as a result of occluded blood flow. The ischemic pain of partial arterial occlusion is not as severe as the abrupt, excruciating pain associated with complete occlusion, such as by an embolus or thrombus."

Now lets say that FM is a condition where sufficient blood flow is not present in skeletal muscle because of a systemic pathology affecting arteriolar flow. Well there is evidence of this in FM. There is also evidence of muscle fibre shortening. Have a look at the calves of many people with FM, typically their calf muscles are significantly shortened. To me they look like "super athletes" - yet when you palpate the muscles they are very tight and prone to spasm. In fact I have watched these muscles ripple and spasm in people with FM.

Also consider what the so-called "tender points" are. Why are these points so "tender"? Is it c.s.? I doubt it. They are more likely to be soft tissue points of poor circulation and higher pain level under pressure not "normal sensations felt as pain, if that was the case why there? Why no other places?

Dr. Brady says: "but the classic fibromyalgia patient also has these other elements that are a signature of a central sensitivity disorder. A lot of times we use the word hypervigilance, meaning their nervous system is hypervigilant to impending threat or harm. Their nervous system is always in a sort of fight or flight emergency panic mode, and over time everything amplifies and becomes catastrophic."

There is no evidence for this, it sounds nice, it "confirms" c.s. in a sort of circular argument. You are hypersensitive because you are hypervigilant . . . even catastrophic and you are hypervigilant because you are hypersensitive?? You can see from this sort of analysis how some people conclude that people with FM "catastophize their pain". Next step is to test their personality to see of they catastrophize more generally. In short this is called garbage psychology! Some Psychologists have been lead down this path and actually studied "faulty illness" beliefs in FM, another kind of catastrophizing.

Another statement that bothers me: "You generally are profoundly fatigued, mainly because of the sleep dysfunction".

Who proved that the fatigue in FM or in ME is due to the sleep disturbance? No one actually! It just seems so logical to people like Dr. Brady so it must be a fact! I have seen people with little or no sleep problem in FM and I have seen people who have corrected their sleep problem but are still left with severe fatigue and painful fatigue. This suggests that the fatigue is not the product of sleep deprivation. I suggest the fatigue is "muscle fatigue" again not to be confused with tiredness.

And then there is "neuropathic pain" in FM. Well neuropathic pain has been linked to arterial flow pathology. The neuropathic pain is afferent not efferent ie the pain arises in the soma and is signaled in the brain. True pain not a hyper-phantom.
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