Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

Conversion Disorder and CRPS

Hearing these and other similar stories, I studied these syndromes further. I first turned, as I frequently do, to UpToDate, an on-line subscription resource. The chapter on pediatric CRPS is written by Dr. David Sherry, a professor of pediatrics at University of Pennsylvania. Dr. Sherry has recategorized Complex regional pain syndrome (CRPS) as an “amplified musculoskeletal pain syndrome (AMPS).” He states that CRPS “is characterized by extreme pain in a limb out of proportion to the history and physical findings⁠, accompanied by one or more signs of autonomic dysfunction.” He adds that conversion symptoms are “not uncommon.” Yet CRPS is characterized by severe pain, induced by normally non-noxious stimuli (allodynia), edema, cyanosis (bluish purple discoloration typically seen with poor circulation), and excessive sweating. Skin and nail changes are common. In adults, CRPS frequently follows injuries such as fractures (1-2%), especially in women; precipitating injuries are less common in kids. CRPS is one of the few pain conditions that can be diagnosed with objective signs (temperature asymmetry, color asymmetry, abnormal hair and nail changes).

Sherry recommends intensive physical therapy for hours daily daily without offering these children any pain relief. “The treatment starts at the first visit with confirming the diagnosis, discontinuing further medical evaluations⁠, stopping medications for pain (these 2 steps are sometimes much harder on the doctor than the child)…It is important that the team is confident in its ability to cure these children, tolerate the child's pain, be genuinely interested in these children, and understand each other's roles and positions because both the child and parents are prone to try to split the team by playing one member off another.” When asked about not providing pain meds, Sherry responded, "There is no good data that medications work. The most recent Cochrane analysis do not support the use of medications...Most children do not do well with medications, have a lot of side effects and they are expensive."

I also learned more about conversion disorders⁠. These are said to occur when there is some sort of unconscious psychological conflict which can’t be adequately expressed, and becomes “converted” to a physical symptom. By definition, it is unconscious, rather than deliberately factitious or malingering.

Sherry lists conversion symptoms his clinic commonly sees⁠, including in them involuntary muscle spasms and “Fainting and lightheadedness, often called postural orthostatic tachycardia syndrome (POTS) or dysautonomia.” He says “Up to 40 percent of children with AMPS will have at least one conversion symptom.”⁠ Sherry adds, “The vast majority of these symptoms need to be ignored since calling attention to them tends to make them worse.” Of note, POTS and dysautonomia are well recognized medical conditions that can be objectively tested (e.g., Tilt Table Test, orthostatic vital signs). These conditions are often treated by cardiologists and neurologists.
Click to expand...

https://blogs.scientificamerican.co...e/have-pain-are-you-crazy-rare-diseases-pt-2/
 
shak8 said:
I hear everyone's horror. But my take on this is: this isn't a Nazi-inspired treatment. It is an effort, both in CRPS and fibromyalgia in children to see if intensive multi-disciplinary treatments will change the course and allow these (mostly teens) to increase their function (go to school, etc).

Because the brains and bodies of children and adolescents are more forgiving and plastic than adults, the theoretical basis is perhaps, sound.

The question is in this experiment: would non-intervention yield the same results and also, how does the child remember the treatment. Was it traumatic or was it helpful. These I would need to know. Usually teens, depending on the state of residency, can give medical consent. Sure there is some coersion no doubt. But having someone with you all the time, encouraging you to engage in activity doesn't sound like torture to me. Remember, they do not ME/CFS. And they can drop out, if need be.

Can we please separate ourselves and our emotions from identification with absolutely every other illness, such as CRPS in children?

Otherwise, label the discussion as: emotional reactions to medical research that has no real bearing on ME/CFS.

Why are these studies offered up to the science4me, anyway?
Click to expand...


Looking through the comments, I don't see too much un-reasonable criticism. The study looks awful. It's uncontrolled and restricts a key term that jacks up response bias. Multiple treatments at once. The 92% having 0 pain after 2-weeks is a huge red flag for the diagnosis/admission part. No treatment is that effective.

Pain is normal and excepted. No big deal. CRPS is not that. Focusing on low-cost, drug-free therapies, though popular for obivous reasons, is not valid if the research backing them up is not valid. It has downsides too, it pulls attention and money away from quality research of the pain disorders.

The ideas behind the research are old cliches - the sickness role, sickness communities perpetuating illness.

If you keep walking, your nerves are essentially getting the message of, 'Well she's still walking [so] this must not be dangerous. Why are we firing?
Click to expand...

This sounds like absolute nonsense, what are your thoughts @Jonathan Edwards

If these researchers actually believed in their treatments and their theories, they would be doing the studies right - they know how to do them.
 
Last edited:
I'm confused.

Is CRPS characterised by severe pain, or extreme pain? As if it's severe then, based solely on the above description quoted by @lunarswirls, there is a definite possibility I may have it, I certainly have periods with all the symptoms conconcurent.

However if it's extreme pain, then I don't. Extreme pain is worse than severe, at least IMO (I'm aware others may use the terms interchangeably), and whilst cyanosis can be concurrent with severe pain I don't ever remember it being concurrent with extreme, for gods sake kill me now, pain.
 
Wonko said:
Is CRPS characterised by severe pain, or extreme pain? As if it's severe then, based solely on the above description quoted by @lunarswirls, there is a definite possibility I may have it, I certainly have periods with all the symptoms conconcurent.
Click to expand...

You can read more about CRPS here:
https://www.ninds.nih.gov/Disorders...ets/Complex-Regional-Pain-Syndrome-Fact-Sheet
What is complex regional pain syndrome?

Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.

CRPS is divided into two types: CRPS-I and CRPS-II. Individuals without a confirmed nerve injury are classified as having CRPS-I (previously known as reflex sympathetic dystrophy syndrome). CRPS-II (previously known as causalgia) is when there is an associated, confirmed nerve injury. As some research has identified evidence of nerve injury in CRPS-I, it is unclear if this disorders will always be divided into two types. Nonetheless, the treatment is similar.

CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away. In more severe cases, individuals may not recover and may have long-term disability.
Click to expand...

What are the symptoms of CRPS?

The key symptom is prolonged severe pain that may be constant. It has been described as “burning,” “pins and needles” sensation, or as if someone were squeezing the affected limb. The pain may spread to the entire arm or leg, even though the injury might have only involved a finger or toe. In rare cases, pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, known as allodynia, in which normal contact with the skin is experienced as very painful.

People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. As a result, an affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.

Other common features of CRPS include:
  • changes in skin texture on the affected area; it may appear shiny and thin
  • abnormal sweating pattern in the affected area or surrounding areas
  • changes in nail and hair growth patterns
  • stiffness in affected joints
  • problems coordinating muscle movement, with decreased ability to move the affected body part
  • abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.
Click to expand...
 
As teenager I went to a hypnotherapist and lied about it helping me, out of a combination of pressure, conforming to what was expected, and wishful thinking.

Children (and adults) tend to go along with the story presented to them, that the treatment will help them. That doesn't mean it actually will.
 
Subtropical Island said:
@shak8 I agree with your main point: we need to avoid knee-jerk condemnation of a study.
[ That’s the sort of thing we’re suffering from ourselves (e.g. presumptions about “fatigue”).]

We need to understand how pain works and more well-designed studies of factors that don’t involve pharmaceuticals is generally a good thing.
(I am not saying that this one is a well-designed study, I haven’t looked and my first thought is to wonder why it is not done on adults first - communication is likely to be a major factor in outcomes).

We need to be discussing what exactly makes this a bad study.
(Not just see the two words: children, pain, and then riff.)

I know we have legitimate concerns about behavioural studies being misused to imply all sorts of social things. But the fault there is with policy makers and those who summarise the findings of studies. They need to be stopped, corrected, taught to do better.

When talking about research, we need to look at whether the researcher has found a hypothesis that is genuinely confirmable using the methods in the experiment. Has the study sufficiently dealt with confounding factors and so forth to be allowed to proceed? Is it a good method? Has the researcher a good track record in observing and recording results? How about their past conclusions? Were they rigorous and stuck to the observations in front of them? Etc.
All of that should have been done before funding was granted (the last three can be more flexible if they haven’t a track record and the subjects of experiment are unlikely to be harmed in any way).

And of course, if it passes all those sorts of tests, then there’s the ethics board.

The solution to nonsense noise, bad reporting and ‘fake news’ is not more noise. It’s succinct critique and communication. It’s having platforms where information is genuinely exchanged and discussed. It’s careful curation of the published material to expand our understanding of everything, not to confirm our assumptions.
I wish that I were more able to do so than I have been since illness. I am most grateful to those here who do.
Click to expand...

Not much can be gleaned from only the abstract of a study. I did note that David Sherry has done several juvenile arthritis studies, listed on PubMed.

I need a way to access the whole study report. Also, in the US clinicaltrials.gov does had ethical review board for each study listed, I think, as well as other info that is highly relevant but may be downplayed in the final study report.
 
shak8 said:
Not much can be gleaned from only the abstract of a study. I did note that David Sherry has done several juvenile arthritis studies, listed on PubMed.

I need a way to access the whole study report. Also, in the US clinicaltrials.gov does had ethical review board for each study listed, I think, as well as other info that is highly relevant but may be downplayed in the final study report.
Click to expand...
Hopefully better than ethical review for UK.
 
dreampop said:
If these researchers actually believed in their treatments and their theories, they would be doing the studies right - they know how to do them.
Click to expand...

On the contrary, I think that many of these individuals are what I would call True Believers. They just see that, in order to "show" the "truth" about how right they are, that requires a certain kind of study and a specific type of reporting. This part isn't in question to me: scientists and clinicians do some real bobbing and weaving in order to continue to support/believe in their own theories, whatever they may be.

It may be that people do this when they passionately believe in something and have come to the conclusion that convincing their audience is more important than HOW they do it. They view the end as so desirous (and inherently ethical) that the unethical methods they use to spread the word/prove their point stop mattering.

I am of the firm belief that you can't reach an ethical end through unethical means. It's not only that the ends cannot justify the means; it's that unethical behavior leads naturally to unethical consequences. The clinicians involved have furthered unethical behavior by "believing in" their theory and promoting it as truth regardless of the actual evidence, and this has directly led to harm. It is clearly recognizable as unethical behavior by outsiders (just look at the Twitterstream). They have only succeeded in fooling themselves and a few within their closely-knit community of believers.

Other people can and will fact check & reality check where insular groups won't.

Twitter thread on this:

 
JaimeS said:
Sooooo brainwashing, y/y?



Oh, those poor, poor doctors. This kind of reporting is absolutely sick-making.
Click to expand...
All children received individualized 1-on-1therapy for 5-6 hours a day
Click to expand...
I see this often in the psychosocial literature and I don't understand how it goes unchallenged. That it's individualized is the most undesirable characteristic of any treatment. The entire point of large medical trials is to figure out the most standardizable prescription that can be handed out without personalizing anything, as it just adds up the workload if you have to dedicate training and effort to the delivery itself.

For all people like to whine about how all medicine does is handing pills, that's actually its most desirable trait, that it's a compact delivery system that is as self-contained and standardized as possible, with as little specialist training required for delivery, as it can't otherwise be scaled up.

But now apparently that's a positive in the psychology-as-a-replacement-to-medicine movement. It can't scale up! It never will because it would be more expensive and that's the entire point of this whole crazy social experiment. You just can't deliver personalized treatment to a large population. And those treatments all have a very low success rate so the waste is just massive.

It's like all the bad features of psychotherapy and medicine rolled into one package that can't be standardized or scale up in any significant way, just without any of the good parts, things like objective reality that can be measured and controlled for or, you know, being actually beneficial.
 
JaimeS said:
I am of the firm belief that you can't reach an ethical end through unethical means. It's not only that the ends cannot justify the means; it's that unethical behavior leads naturally to unethical consequences.
Click to expand...
Right on. Plans never survive their first encounter with reality. It's incredibly difficult to predict what the ends will be, even by carefully controlling the means. In reality, the means generally either become the ends, or influence the ends so much that they make up most of the outcome. Unethical means will almost always lead to unethical ends, they just carry too much momentum to make some magical pivot to some imagined "when I'm finally in charge, I'll use my power for good". It never happens this way.

It's denied but a pillar of the whole psychosocial ideology is that it is founded on deceit. It hides its true intent and makes deceit an integral part of its process when working with patients, telling them lies in order to gain their confidence so that it's easier to brainwash them into believing the therapist's perception of reality. That's gaslighting. It's unethical. It is integral to the psychosocial ideology. Denying that it is so is also part of the process. It's a lie wrapped in deceit.

For that reason alone it is guaranteed to fail. It is not even honest with itself and in its declared intent, even officially. Deceit is baked in and unmovable from the whole. If anything, what medicine needs is radical honesty, not intentionally deceitful manufactured nonsense. One phrase (and its mindset) that needs to be excised (or even exorcised) is: it's for the patient's own good. It's not and almost never is. No one should have the dictatorial privilege to make that decision for someone unless that person has been declared mentally inept through an accountable process.

At the very best all those effects from psychosocial trials are placebo (and a healthy dose of cheating, cherry-picking and bias). And if there's at least one fact of placebo that seems proven, it's that it does not matter if you hide it or not, it works just the same. So deceit should not be accepted since it's not even required to produce this effect.
 
rvallee said:
the means generally either become the ends, or influence the ends so much that they make up most of the outcome.
Click to expand...

Thanks, I was struggling to put that exact thing into words.

rvallee said:
Unethical means will almost always lead to unethical ends, they just carry too much momentum to make some magical pivot to some imagined "when I'm finally in charge, I'll use my power for good". It never happens this way.
Click to expand...

:thumbup:

rvallee said:
makes deceit an integral part of its process when working with patients, telling them lies in order to gain their confidence so that it's easier to brainwash them into believing the therapist's perception of reality.
Click to expand...

Yes, I've found that to be one of the more odious aspects of the entire business. That's also why the name for hysteria keeps shifting: it's a transparent attempt to put something on the patient's chart that they won't recognize for what it is.

rvallee said:
For that reason alone it is guaranteed to fail. It is not even honest with itself
Click to expand...

Yep.

rvallee said:
If anything, what medicine needs is radical honesty
Click to expand...

This is one of @JenB 's main talking points and I really agree. Start transitioning from a paternalistic authority role to a partnership. Don't use ignorance as an excuse to treat someone else as less than you (your ignorance or theirs!)
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom