“Well, your symptom is associated with disease X, but your don’t want to have that, disease X is a terrible disease.”

Really, after a couple of doctors say that to you, it gets a bit disconcerting.

Actually, I think there is the expectation that once you have a diagnosis you will have a better chance of knowing what treatments will be more effective. That IS generally why we label things, right? So that we can research, diagnose and treat conditions based on their similarities.

I suspect that the negative reaction to being diagnosed with “arthritis” or “fibromyalgia” is due to the fact that the patient was hoping they would have something much easier to treat. You can change the name all you want, but you are not going to change the reality that the patient has something that does not have an short easy treatment.

I am not attempting to be offensive or inconsiderate of individuals who live with chronic pain. I believe we in healthcare aren’t doing a good enough job at understanding how to handle these individuals.

If you come up with a new word for fibro, how long before that word will accumulate the negative associations that fibro has?

There is some research to indicate that understanding “pain”, can help in its management or reduction. Here are some resources to learn more about this concept (again most of these can be downloaded on bodyinmind.org for free):
Gallagher L, McAuley J, Moseley GL (2013) A Randomized-controlled Trial of Using a Book of Metaphors to Reconceptualize Pain and Decrease Catastrophizing in People With Chronic Pain. Clin J Pain 29(1):20-5.
Moseley,GL, Nicholas,MK and Hodges,PW (2004) A randomized controlled trial of intensive neurophysiology education in chronic low back pain. Clin J Pain20(5):324-30

I do suspect that the term “fibromyalgia” is a bit of a nocebo. If the brain suspects a threat, it will respond. So if a term, leads to an expectation that their life is now defined by a “word”, it may respond. I am all for focusing on the management of symptoms—I am not quite sure that giving the actual diagnostic term is helpful. Thats what I was indicating in my response and what you confirmed when you describe “This is what I’ve read on the prognoses of FIBRO “Most patients with fibromyalgia continue to have chronic pain and fatigue. ” Expectations for something, can often lead to something. When a diagnosis is given to a condition such as fibro, it is relatively an educated guess. I am not familiar with any gold reference standard in its detection (if anyone else is, please correct me). So I wouldn’t say anyone is spinning the facts by addressing symptoms and giving you a diagnosis such as “non-specific pain”. Understand what I am saying? I do suspect that when suspecting someone may have something like this, referral to the appropriate specialists should be made so that the symptoms can be addressed in the bio, psycho and social domains.

$149 (plus shipping and handling) is lot of money. If there is a problem finding appropriate therapy, there are good self-help books out there that would cover many of the approaches they mention and they are a lot cheaper.

“What if we explained that we know that they hurt, and its likely due to an overactive nervous system, but have an expectation that they can get better if they take an active approach to care…”

So what do you then say if they take a proactive approach and they don’t get better? Does that just mean they weren’t “proactive” enough? Also by “get better” here do you mean improve or a return to normal?

This is what I’ve read on the prognoses of FIBRO “Most patients with fibromyalgia continue to have chronic pain and fatigue. Despite little change in symptoms in 14 years, two-thirds of patients reported that they were working full time and that fibromyalgia interfered only modestly with their lives.[12] If the patient has a sense of control over pain, a belief that he or she is not disabled, and understands that pain is not a sign of damage, the prognosis is better.[12] Other behaviors associated with better outcomes included seeking help from others, decreasing guarding during examination, exercising more, and pacing activities.[12]”

http://www.mdconsult.com/das/article/body/402188163-2/jorg=clinics&source=&sp=23772897&sid=0/N/774434/1.html?issn=0095-4543

Sorry to be negative. I can see where you are coming from, but as a patient, I dislike it when I suspect that that health care provider is spinning the facts to reduce my anxiety. Your statement feels a little bit spin like. I find the best way a healthcare provider can reduce my anxiety is to communicate a clear plan and process for dealing with symptoms. Ex: This is the therapy we have found to be most effective for dealing with this symptom. Try this for x weeks then come back if it has not solved the problem. There are other approaches we can try.

If I feel I am working within a good process and plan, I can allow myself to trust that plan and focus on other things. I believe this actually supported by psycological research, but I’d have to track down the source.

We do know that pain is 100% an output from the brain based upon a multitude of inputs (including psychological variables such as depression, anxiety, pain catastrophizing, etc—Melzack’s Neuromatrix).
If we can improve a sense of well-being, while decreasing the perception of the threat of an illness, I suspect pain can improve.

This program appears to be de-threatening, a threatened nervous system, and I somewhat blame the nocebo that we often elicit when giving or explaining a diagnosis such as fibromyalgia (ie. Do you suspect that giving someone a diagnosis of fibro may lead to catastrophic thoughts, kinesiophobia and fear avoidance? I would argue it does. Did this improve or hinder that individuals condition? What if we explained that we know that they hurt, and its likely due to an overactive nervous system, but have an expectation that they can get better if they take an active approach to care… )

I agree that the site does look a bit snake oily, but the concept is being heavily studied by groups such as Body In Mind (http://www.bodyinmind.org/resources/journal-articles/) and we are finding that altering an understanding or perception of a threat, will make the brain less protective.

Just some thoughts…

Sorry, I digress.

It’s not so much the words themselves as the uses they are put to, or tortured into, that bother me.

Oh well, to play devil’s advocate, Cognitive Behavior Therapy is basically just learning too, but sometimes it is useful to distinguish different approaches with specific vocabulary.

Some quotes —

“Through the Dynamic Neural Retraining System™ participants will learn to recognize the unconscious reactions associated with a Limbic System impairment and how to consciously interrupt the associated trauma cycle.”

“The condition of Multiple Chemical Sensitivity indicates that the brain is stuck in a distorted self-protective mechanism.”

“The hyper vigilance in the systems of the body relaxes which allows the natural growth and healing processes to resume.”

“Hyper-viligance” is mentioned in many contexts.

We might not approve of some of the jargon, but there are indications that the program is based upon some sound insights.

That makes perfect sense to me, where a five-cent technical description has become a five-dollar marketing phrase that replaces that much simpler word, learning. Learning sounds all schoolhouse-y, hardly something you can create a buzz about and sell to the buzz-able. But neural plasticity! And brain training! Why that sounds like exactly the sort of sophisticated & expensive things Dr. Oz must do on his rare Saturdays off.

To the best of my knowledge it is merely the sublimation of conscious activity into unconcious neural “macros.” In other words as you learn a task, you need to be aware of and try to get right each and every little step of it. With practice, you develop neural connections such that when you initiate a well learned “muscle” memory task, the subsequent steps involved are automatically activated in sequence without need for further conscious thought. However, there is no indication that the muscles themselves are “learning” anything; i.e. if you took the brain connection away the muscle would not be able to perform the task independently.

The only wrinkle there is that fine movements can actually cause modifications of the innervation of muscle. When we are born our nerves innervate large bundles of muscle fibers. So when the baby tries to activate a muscle, many fibers are recruited simultaneously which is why babies’ movements are jerky and awkward. Over time and with practice, those muscles that need more fine control get more and more innervation allowing for larger numbers of smaller bundles of fibers to be recruited sequentially rather than smaller numbers of large bundles of fibers, thus allowing finer and more streamlined motion. The capacity for this is obviously variable and determined by genetics and epigenetics (just thought I’d toss that one in for ya!) as well as the environment in general.

Now, I recall that the capacity for re-innervation in babies diminishes drastically over time. How much of that is retained in adults I do not know. But we also thought the brain was pretty “fixed” for a long time and we are seeing now how much plasticity there is, so I wouldn’t be too suprised if there is at least some plasticity in muscle fiber recruitment as well. Perhaps someone else knows more on this specific topic?

In any event, the bulk of the “muscle memory” is actually encoded in subconscious neural connections within the brain.

Hmm… 5 minutes of research and it appears that this study may be urban legend! I guess I can’t trust my college professors…

Or even when you aren’t shooting baskets. I’m sorry that I’m too lazy to look it up right now, but there was a psychology study many years ago which had equal numbers of men shooting baskets. The control group did nothing more than shoot. The other group would also spend time THINKING about shooting baskets – imagining the process, if you will. That group became much more proficient.

I know, sorry – TMI.