Taming the Zebra Excerpt 3

Website: tamingthezebra.org

Mailing List: https://www.tamingthezebra.org/join-the-email-list

Excerpt from: Taming the Zebra – It’s Much More than Hypermobility: The Definitive Physical Therapy Guide to Managing HSD/EDS, Volume 1 Systemic Issues and General Approach 

(Due out Winter of 2023)

CHAPTER 5

 HSD/EDS and the Skin: Presentation and Management Strategies in Rehab Settings

 As with all EDS presentations, skin involvement varies from person to person and may change in severity throughout one’s life. For this reason, the patient and practitioner need to consider some factors when approaching rehab strategies to avoid exacerbating existing issues. Not all patients with HSD/EDS will present with the issues depicted in this chapter. If a patient or practitioner feels that one of the issues may be present, this is an area to explore individually with appropriate members of the medical team.

 Different classifications of EDS and HSD may have different qualities of skin presentation. Skin hyperextensibility is seen across many different classifications of EDS and more often include cEDS, clEDS, cvEDS, aEDS, dEDS, kEDS, spEDS, mcEDS, pEDS, AEBP1 variant, hEDS, and HSD. Skin fragility (skin that is more easy to tear) is more commonly seen with cEDS, cvEDS, aEDS, dEDS, kEDS-PLOD1, mcEDS, pEDS, AEBP1 variant, and hEDS. Poor wound healing is seen in a variety of severity, more commonly with kEDS-PLOD1, pEDS, AEBP1 variant, and Mast Cell Activation Syndrome (MCAS). Easy bruising is more commonly seen with cEDS, clEDS, cvEDS, vEDS, aEDS, dEDS, kEDS, pEDS, and sometimes with hEDS. Easy bruising that is cyclical (comes and goes) may be more related to systemic flare-ups, such as MCAS reactions.

This chapter presents the different types of skin involvement that might be seen in the clinic and if that issue is present, how to modify treatment or interventions as needed for better outcomes. The individual presentation should always be considered with modifications implemented as needed for the best outcomes in therapy.

 Unusual Skin Presentations

 There are certain skin presentations in HSD/EDS that do not have a major impact on rehabilitation outcomes. For example, the presence of soft, velvety, doughy skin texture does not usually impact therapeutic outcomes but may change manual therapy approaches. Other similar skin presentations are detailed in Figure 5.1.

Skin PresentationDescriptionTypical Location
Molluscoid PseudotumorsAreas of fat tissue herniating through atrophic scarsHigh pressure areas, such as the back of the elbows and front of the knees
Subcutaneous SpheroidsAreas of fat that have lost their blood supply and become firm areas of calcification, moveable under the skinLegs and arms
Piezogenic PapulesSoft, fleshy nodules caused by fat herniating through the dermis (skin layers)Heels and wrists
Hemosiderotic PlaquesDiscolorations of the skin generally found in areas of atrophic scarringShins of those with Classical and Periodontal EDS

Figure 5.1 Common skin presentations, description, and typical location.

While these skin issues more typically present in HSD/EDS are not necessarily something to treat in the rehab setting, it is important for the therapist to note the level of skin involvement and adjust treatment methods as needed to protect the skin from trauma and tearing, and to avoid tissue scraping over these spots as it will inflame, not improve these lumps and bumps. Many will not be able to tolerate tape without a protective barrier applied first. 

Basics of EDS Part 3

2022.12.16

Hello, Zeborah Dazzle, PT, WWF here. I am the spokes-zebra and patient educator for Good Health Physical Therapy and Wellness. As some of you know, while I am a physical therapist who treats all kinds of problems, including all kinds of bone and muscle problems, my special interest is hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD). Sometimes it is wise to pause and go back to basics. That is what I will focus on with this post.

What Kinds of Problems Do HSD and EDS Cause?

Both HSD and hEDS are problems with connective tissue. Connective tissue is what holds the body together and it is everywhere in the body. If connective tissue is weak or fragile, many aspects of body function are affected. First in this area is laxity of the skin and joints.

Skin and Joint

Too stretchy connective tissue makes the skin overly stretchy, and also, makes the joints too mobile – hypermobile. The excessive stretchiness of the joints in particular frequently (but not always) leads to pain. When we say ‘not always’ here, remember that in just about every aspect of these conditions, patients fall on a spectrum from few symptoms to severe.

One of the sub-criteria for diagnosis of hEDS in particular is pain in multiple joints lasting more than three months. Mechanically loose joints and weak or overly stretchy connective tissue can lead both to pain and to a number of secondary problems, such as:

early joint damage including spinal disc damage, neck instability, muscle weakness, headaches and migraines, pelvic pain, TMJ (jaw) pain and clicking, gum disease and dental fractures, chiari malformation (connective tissue weakness at the bottom of the skull allows the lower part of the brain to hang out of the skull opening), tethered cord (spinal cord restriction, usually low in the back).

Nervous System

Additionally, HSD and hEDS can affect the nervous system. This can occur in several ways. Loose joints may be less sensitive to what their position is leading to a decrease of the joint awareness (called proprioception) affecting coordination. Prolonged daily pain may cause the nervous system to become sensitized and to create pain sensations  which are out of proportion to the damage being done. And finally, connective tissue deficits can affect the involuntary nervous system of the body.

One of the major divisions of the nervous system is the involuntary, or autonomic, nervous system. The two halves of this system (sympathetic and parasympathetic) are constantly working to keep our bodies in balance and adapted to the world around us. Among the physical functions fully or partially controlled by the involuntary/ autonomic system are: heart rate, breathing rate, blood pressure, opening and closing of the pupils, gut movements for digestion and release of some digestive juices, and temperature regulation.

Research has shown that most people with HSD or hEDS have at least one or more regular symptoms connected to the involuntary/ autonomic nervous system. Sometimes these symptoms are transient, meaning they come and go. Sometimes there are multiple symptoms rising to the level of a problem syndrome. The general term for this is dysautonomia.

Some patients with HSD/hEDS tolerate standing poorly, which may simply be labeled as Orthostatic Intolerance. Some patients may experience chronically low blood pressure caused by the nervous system (Neurally Mediated Hypotension). A common autonomic imbalance affecting patients with is POTS. This is an abbreviation for Postural Orthostatic Tachycardia Syndrome.

The words postural and orthostasis in this refer primarily to the changes in blood flow in the body caused when we change positions such as going from lying to sitting or sitting to standing or just standing for a sustained period. Since the nerves of the involuntary nervous system run through connective tissue, they can be thrown out of balance by flaws or deficits in the connective tissue. So, in POTS, the longer the patient stands, the more blood settles toward the legs and feet, this takes blood away from the brain and from the nerves which sense blood pressure around the heart and in the neck. The drop in blood pressure leads to a fast heart rate (tachycardia) to try to catch up. And the patient becomes faint or dizzy or feels sick. 

Other dysautonomia symptoms may include poor temperature regulation (feeling too hot or too cold), decreased or stalled gut movement in digestion (gastroparesis), and fatigue.

Hernias and Organ Prolapse

Besides the effect of the autonomic nervous system on digestion, connective tissue weakness in the gut can lead to hernias and organ prolapse plus functional problems like irritable bowel syndrome.

Mast Cell Imbalance

One other syndrome which is commonly associated with HSD or hEDS involves a tiny little cell which lives mostly in the connective tissues and which acts as a frontline sentinel of the body sensing wounds, foreign bodies and infections: the mast cell. Like the autonomic nervous system, mast cells can be thrown out of balance by connective tissue problems which can result in Mast Cell Activation Syndrome.

The mast cells produce a number of chemicals, call mediators, the first function of which is to cause inflammation. When the mast cells are out of balance, they become overly sensitive and may release their inflammatory mediators at random times or in response to triggering events, foods or stimuli. This can result in an array of problems which may appear to be weird and unrelated to each other. Here is a partial list of some of the problems which may result:

abdominal pain, bladder pain, brain fog, brittle fingernails, chemical sensitivity, chronic cough, chronic kidney disease,  chronic sinus irritation or infections, constipation, cystitis, diarrhea, dry eyes/ blurred vision, endometriosis, fatigue, gallbladder inflammation, hair loss, headaches,  hearing loss, high blood pressure, hyper or hypothyroid, incontinence, increased vulnerability to infection, insomnia, laryngitis, loss of appetite, lymph node enlargement, nausea, nose bleeds, numbness, painful urination, rashes, Raynaud’s disease, ringing in ears, sore throat, sores, sweats/ chills, temperature sensitivity, tingling, vaginal inflammation

In the next blog entry, we will look at how HSD and hEDS are treated.

Until then, Cheers! Zebbie

P.S. More information is available at the Ehlers-Danlos Society website. I particularly like this downloadable PDF overview: https://ehlers-danlos.com/wp-content/uploads/EDS_Awareness_2017_v3_img_2021.pdf

Thanks to Dr. Mark Melecki, PT for his assistance in writing this blog. (It is very challenging to type with hooves rather than fingers. Thanks Mark.)

Basics of EDS – Part 2

2022.11.10
Basics, Part 2


Hello, Zeborah Dazzle, PT, WWF here. I am the spokes-zebra and patient educator for Good Health Physical Therapy and Wellness.


As some of you know, while I am a physical therapist who treats all kinds of problems, including all kinds of bone and muscle problems, my special interest is Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). Sometimes it is wise to pause and go back to basics. That is what I will focus on with this post.


By the way, in the last post while considering the types of Ehlers-Danlos, I forgot to mention that it occurs across all ethnic and racial backgrounds. And for some patients, inheritance is dominant, meaning that only one parent can pass it to the kids (autosomal dominant) and in some recessive, meaning both parents would have to have the gene to pass it on (autosomal recessive).


What is Hypermobility Spectrum Disorder and How is it Different from Ehlers-Danlos?

In the last post, we talked about how 12 of the 13 types of Ehlers-Danlos Syndrome have genetic tests, but that the most common, hypermobile Ehlers-Danlos Syndrome (hEDS, 80-90% of all EDS) does not. This diagnosis is done by a set of criteria. However, there are many patients who may be generally hypermobile but do not fit the formal criteria for hEDS. These patients are then diagnosed with Hypermobility Spectrum Disorder (HSD), which it should be noted does not mean that they have less pain or fewer symptoms than someone with the diagnosis of hEDS – but more on that later.


At this point in writing this, I see that I have already used the word “hypermobility” many times and used it many times in the last blog post too. So, I think it would be wise to consider what this means.


A joint that is too flexible without adequate soft tissue support is hypermobile.


All joints in the body exist in a balance between flexible and inflexible, or said another way, stable and unstable. Some joints are naturally more stable than others with each joint having its own best level of stability. There are a number of factors which hold the bones together so they can do their job. One factor is the shape of the bones. For example, the bones of the skull are shaped like puzzle pieces which fit together closely. A slight suction between smooth joint surfaces which are lubricated with joint fluid (“synovial fluid”) is another factor which holds bones together — like a suction cup on a windowpane but less strong. By far though, the greatest support to the joints is the soft tissue support around it such as the ligaments and the surrounding muscles. Therapists think of the optimal state of a joint as being flexible and strong.


When a joint is unstable because the soft tissues are broken (such as a severe sprain) or too stretchable or too fragile, this leads to too much mobility at the joint surfaces. This is not just a problem of HSD and hEDS. Even in people with normal connective tissue, sprains, strains and sometimes aging can leave joints too mobile. And weak muscles can also cause local problems to joints. Working with this kind of problem is daily fare for physical therapists. But in HSD and hEDS multiple joints of the body if not all are affected by faulty connective tissue not just one or two localized joints.


So, HSD is an umbrella diagnosis for all patients who are excessively mobile in most or all joints of their body. Like hEDS this is thought to be inherited, but no specific genetic mutation is known. hEDS is under the umbrella of the hypermobility spectrum disorder diagnosis, just more specific.


What does the word “spectrum” mean in Hypermobility Spectrum Disorder?


We say that patients with HSD and hEDS are on a spectrum because of the huge variation in symptom levels they can experience. Thinking back to high school, you may remember a thing called a “bell curve”, also sometimes called a normal distribution. This is a graph of how often something happens or how often a specific variable shows up in a data group. With HSD and hEDS, some patients have very few or even no symptoms. In a graph of how many patients with HSD or hEDS have symptoms of different severity, these people would be on the left, mild, side of the curve. Where patients with many or severe problems would be on the right, severe side. Those with moderate problem levels would be the greatest in number and near the average center.

According to the Ehlers-Danlos Society, the occurrence of HSD in the population is about 1/500. This means that out of 332 million people in the US, about 664,000 or .2% are hypermobile. I suspect this estimate is low due to under diagnosing.


I am trying to keep these blog posts bite-sized, meaning about two pages. So, I will continue in the next post and consider the kinds of symptoms that HSD and hEDS can cause, and also what some of the principles of treatment are.


Until then, Cheers! Zebbie


P.S. More information is available at the Ehlers-Danlos Society website. I particularly like this downloadable PDF overview: https://ehlers-danlos.com/wp-content/uploads/EDS_Awareness_2017_v3_img_2021.pdf


Thanks to Dr. Mark Melecki, PT for his assistance in writing this blog. (It is very challenging to type with hooves rather than fingers. Thanks Mark!)

Taming the Zebra

Website: tamingthezebra.org

Mailing List: https://www.tamingthezebra.org/join-the-email-list

Excerpt from: Taming the Zebra – It’s Much More than Hypermobility: The Definitive Physical Therapy Guide to Managing HSD/EDS, Volume 1 Systemic Issues and General Approach 

(Due out Winter of 2023)

CHAPTER 2

 Understanding Connective Tissue

The Ehlers-Danlos Syndromes (EDS) are described as a group of heritable heterogenous connective tissue disorders, meaning different genetic variations are present with different classifications of EDS. EDS is not simply a diagnosis of joint hypermobility, but a reference to a connective tissue disorder throughout the body, involving many different systems. Presentation with each patient will be determined by the type of genetic variation identified along with genetic expression, which is further discussed below.

The human body is made up of nervous, muscular, epithelial (skin), and connective tissue. Connective tissue can be found in the nervous and muscular tissue and adjacent to the epithelial tissue. Connective tissue plays many different roles for us within our bodies (Figure 2.1). It helps package and compartmentalize areas of the body by providing support or protection. It can bind and separate organs or other tissues. Connective tissue also plays a role in protection, defense, and repair. It aids in scar tissue formation, inflammation, and defense against invading bacteria or other substances through some of its molecular components. It acts as insulation, storing energy as adipose tissue (fat). It also assists in transportation throughout the body. Blood is a connective tissue that delivers oxygen and nutrients throughout the body. Blood is considered a connective tissue because it consists of blood cells surrounded by a fluid matrix called blood plasma. Fascia is a connective tissue creating a continuous system throughout the body, becoming a means of directing and transferring mechanical forces within the body. If, however, the connective tissue is dysfunctional, this can lead to the transfer of inefficient forces and lead to imbalances and/or restrictions. It is thought that the connective tissue is the medium for acupuncture treatment and explains how needles affect organs from afar. Myofascial release experts purport that memory can be stored in the guarding patterns of the tissue, explaining some chronic, non-responsive fascial dysfunction. Connective tissue is complex and expansive within the human body.

Roles of Connective Tissues Throughout the Body
Packaging and Compartmentalizing
Protection, Defense, and Repair
Insulation
Transfer of Mechanical Forces Throughout the Body
Figure 2.1 Connective tissues assists with many different functions and roles within the human body. A connective tissue disorder can cause issues in any of these roles listed.

Connective tissue is the most abundant tissue in our body, found just about everywhere. It is found in fibrous tissues, fat, cartilage, bone, bone marrow, tendons, the wall of the gastrointestinal system, skin, and blood vessel walls. It also encloses the brain and spinal column. Connective tissue is made up of many different components, primarily elastin, collagen fibers, ground substance (gelatinous material that fills the spaces between fibers and cells), and immune cells. Those collagen fibers along with proteoglycans (protein) and glycosaminoglycans (polysaccharide compound) together make up the extracellular matrix along with other compounds. The distribution and ratio of each of these in a particular make-up of connective tissue will determine what the connective tissue looks like (i.e. fibrous versus ligamentous). The function of the connective tissue is determined by the protein composition of the extracellular matrix (ECM). The immune cells reside in the extracellular matrix. 

Figure 2.2 Connective tissue within the human body makes up cartilage, tendon, bone, adipose tissue, and ligaments. Connective tissue surrounds the blood vessel walls, muscles, and nerves, also influencing these systems as well.

Basics of EDS

2022.11.10
Basics
Hello, Zeborah Dazzle, PT, WWF here. I am the spokes-zebra and patient educator for Good Health Physical Therapy and Wellness.


As some of you know, while I am a physical therapist who treats all kinds of problems, including all kinds of bone and muscle problems, my special interest is Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). Sometimes it is wise to pause and go back to basics. That is what I will focus on with this and the next post.


What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders. At present, there are thirteen variations of the disease. All involve fragility of one or more of the 28 types of collagen which is the major part of connective tissue.


Connective tissue supports, protects and holds the tissues of our bodies together. It includes tendons, ligaments, blood and the support structures for arteries, veins and muscles as well as internal organs. It is very important in the body, and it is EVERYWHERE. A colleague of mine likes to tell patient’s that if he was an evil wizard and waved a wand that took away all other cell types in your body other than connective tissue, there would still be a perfect three dimensional you remaining. (You would be dead though and we could probably shine a flashlight through you – bad wizard.)


Among the thirteen different types of EDS are types which predominantly affect different parts of the body especially the heart, the blood vessels, the eyes, skin, gums and bones/ joints. Here is a list of the names of the thirteen.


How Common is Ehlers-Danlos Syndrome?
The different EDS types range from uncommon to very rare in the general population. The single most common type of EDS is Hypermobile Ehlers-Danlos Syndrome (hEDS). The prevalence of this condition is estimated by the Ehlers-Danlos Society as 1/3500 to 1/5000 people. That means that out of the 332,218,200 people in the US there may be 94, 919 (0.02%) of the population with hEDS. The other kinds of EDS are much less common ranging from 1/40,000 (about 8,305 people, .003%) to 1/1 million people (about 332 people). I believe these estimates are low due to under diagnosing.


How is Ehlers Danlos Diagnosed?
Of the thirteen different types, there are genetic tests for all but the most common, hEDS. As a result, the diagnosis of hEDS is performed by evaluating a patient through three criteria levels. In the first level, hypermobility, or excessive stretch/ flexy/ bendy-ness is screened for. In the second level, physical characteristics commonly associated with hEDS are screened including some physical characteristics, skin texture and stretchiness and common medical history indicators. In the last criteria level, a physician must rule out other conditions which can mimic the symptoms of hEDS. It is common for patients to come to see me and want me to diagnose hEDS. Physical therapists are trained to evaluate and diagnose movement disorders and to correlate these with medical problems which sometimes means screening for problems. So, as a PT, I can diagnose hypermobility but only screen for hEDS. I cannot not diagnose it formally because I cannot rule out other conditions. Patients who are hypermobile but do not fit the diagnostic criteria of hEDS are diagnosed with hypermobility spectrum disorder (HSD). More on this in a later post.


Why Do People with Ehlers-Danlos Syndrome Call Themselves “Zebras”?
In the next post, we will go into more detail about the kinds of problems that EDS can cause, but for now let me simply say that they are multiple and often appear to be unrelated – joint pain in many areas of the body, bruising, strains, sprains, subluxations or dislocations, gut problems, dizziness and many more. For this reason, people with EDS do not fit in to a quick common pattern for diagnosis.
When medical students are trained, they spend a great deal of time learning about different conditions and the symptoms they can create. Because common symptoms can so often be caused by different underlying conditions, this makes diagnosis hard. Almost all medical students are taught this aphorism: If you hear hoofbeats, think horses, not zebras.


This is a good thing overall. Afterall, if Mrs. Smith comes in to see the doctor complaining of a sore throat, the most probable cause is something common. Perhaps she was shouting at a football game or perhaps she has a cold. Throat cancer is much farther down the list.


The problem for EDS patients though is that we are actually zebras (or in my case a zebra-zebra). Beginning medical training in anatomy is changing in medical school these days, but traditionally anatomy was taught by cadaver dissection. During this process, connective tissue is commonly the stuff put in the container under the table while the student is looking for another structure like a nerve or a blood vessel or an organ or a muscle. Is it any surprise, that a connective tissue disorder is often not on the doctors mental list of potential diagnoses? I am hopeful that this is changing, but in the meanwhile, it is up to all of us with HSD or EDS to educate ourselves so we can partner with our providers in the most positive way.


In the next post, we will look more closely at hypermobility spectrum disorder and the symptoms that HSD and EDS can create as well as an overview of treatment principles.


Until then, Cheers! Zebbie


Thanks to Dr. Mark Melecki, PT for his assistance in writing this blog. (It is very challenging to type with hooves rather than fingers. Thanks Mark.)

Pain Education Series #4


Hello, Zeborah Dazzle, PT, WWF here —

Spokes-zebra and patient educator for Good Health Physical Therapy. We have been talking about pain over the last three posts, and specifically how, in some situations, the nervous system can become sensitized to keep pain levels stirred up. In these instances, the nervous system itself can be as much or more of a cause of the chronic pain than any tissue damage. When the spinal cord and brain become sensitized, this is called central sensitization. So, our question is how to calm those sensitized nervous system?
The best results in therapy often happen when multiple approaches are used in a coordinated plan. The model we use is the Calm Nerve House and the basic pillars of the house are Pain Education, Sleep, Exercise and Pacing. Today, let’s talk more about pacing and exercise – which go hand in hand for us zebras.


PACING
Before we even begin to talk about exercise, let’s stop to consider a question: if the nervous system is sensitized and now a significant part of the pain problem, how did it get that way. The answer to this could be made technical and confusing, but it is basically simple. The brain is a learning organ and it learned to sound the pain alarm from repeated injuries, stress, old traumas, and other factors. So, as we try to calm the nervous system, what we are really saying is that we are trying to help the brain learn something new once again.
In helping the brain to learn something new, the key is pacing. By this is meant, enough movement to push the nervous system and muscular system up to the edge and then back away. We do not want to drive the nervous system up to the point where it sounds the pain alarm. To help to do this, there are three pain rules that are very useful.

  1. No sharp pain. Do not intentionally do anything which causes sharp pain, do not try to push through a sharp pain.
  2. Rule of 2-20. Before you start an activity, ask yourself what your pain level is from 0 to 10 (0 is no pain and 10 means call 911). As you perform the activity, if the pain level goes up 2 points or more above the starting level, stop and take a break for 20 minutes. If after 20 minutes, your pain goes back down, you can do a little more of the activity, not a lot more. If it does not go back down, you are done with that activity for that day.
  3. Above 5. If you are getting ready to start an activity, and your pain level is above a 5, it would be
    wise to seek coaching from your physical therapist about how to proceed. If your pain is right at 5,
    proceed slowly and cautiously and see how your body responds. Apply the rule of 2-20 as needed.

EXERCISE

For physical therapists, exercise means movement. That movement could be lifting weights or jogging or playing basketball for some, but that is certainly not where most people with chronic pain start. Overall, physical therapists working with patients having chronic pain apply gentle stretching and strengthening exercises, building gradually, to help the patient re-establish the foundations of movement. In other words, we want to get you feeling well enough to do the stuff you want to and need to be able to do, like: walk through the grocery, stand at work, dust the book shelves, fold the laundry or whatever basic things your life requires of you.

This means that we look for joints that are moving too much or too little, muscles that are weak or too strong relative to a tight muscle, connective tissue that is too tight. The goal is always to establish strong plus flexible plus minimal or no pain. With a sensitized nervous system, this means finding movements that do not overstress the system (see pain rules above) and then consistently and persistently working toward comfortable movement.

A special word here for zebras like me, meaning those with hypermobility spectrum disorder or Ehlers- Danlos Syndrome. Special attention for us must be paid to building the muscle around joints that are too loose, especially those that pop out. This is the way we will work our way back to comfort. Now that we have described the pillars of the Calm Nerve House, in the next post, we will discuss some additional approaches inside the House that help to calm the nerves.

Until next post, Cheers!

Zebbie

Welcoming our Newest Team Member – Pain Education Series – #1

Zeborah Dazzle, PT, WWF

Pain Education Series – #1
Hello,

My name is Zeborah Dazzle, PT, WWF and I am the new spokes zebra and a patient educator for
Good Health Physical Therapy. Today, I would like to talk about a topic familiar to all of us with
hypermobility or Ehlers-Danlos syndrome or any one of a number of other kinds of health problems.
Let’s talk about pain.


When I first went through PT school, the model of pain we were taught was something like a doorbell.
Some thing happens to the body, a stimulus, which sets off local nerves, like pressing the doorbell
button, and the wires carry the signal to the brain which registers pain. Ding-dong. ☹
Over the last twenty years though, science has come to recognize that pain is MUCH more complex than
this. Well, actually, not to contradict myself, pain can be as simple as the doorbell model but when it
continues, it becomes much more complex. Let me explain.


Imagine being in the kitchen barefoot (not hard for me since I am always bare hoofed). You drop a heavy
pot and it hits your foot. Ow! Your foot is bruised but not broken and it hurts. This fresh “acute” pain is
like the doorbell model. The pot hit your foot and pushed the button sending signals through the nerves
to the brain. And if your foot heals normally, the pain will fade as the healing happens and then go
away. But sometimes, even as healing happens, pain can continue. Why? Because the nervous system
has become sensitized. And then, the problem becomes more of a nervous system problem than a
bruised foot problem.


As you probably know, the nervous system is the control system for the body. Nerves big and small
reach almost every square centimeter of the body (I’m from South Africa – we think metric there). And
the nervous system is built for learning. So, when pain nerves keep firing over and over, such as if
someone hurts their foot over and over, or if the person has “connective tissue issues” as we like to say,
the nerves learn to be more sensitive. This can include the nerves in the foot, the nerves up the leg, the
spinal cord and especially the brain.


The brain is a learning organ. It is also where signals from the body are interpreted. For example, using a
different sense, your ears receive sound waves, and these are converted to nerve impulses by the
cochlea and then carried to the brain by the hearing (acoustic) nerves. Only in the brain though do the
nerve impulses get interpreted so that you can identify the laughter of a child or anger in someone’s
voice or your favorite song. Many parts of the brain get involved with this including areas that identify
sound, memory centers, areas that recognize speech and language and emotional centers. Pain works in
much this same way.


Pain is the brain’s estimate that the body is being harmed. And the brain does not always get the
estimate right. When the brain is estimating potential harm, it uses what it has already learned about
the world, and it calculates in past learning. So, if you have a history of being abused, or a history of
injuring the body area before, or you are stressed and on edge, the brains estimate is higher than what
is true to the tissues. We call this central sensitization.


I believe that most of us with hypermobility or EDS have brains which are to some degree sensitized. So,
we need to treat the nervous system in our recovery too. What the brain can learn though, it can re-
learn or unlearn. How do we help the brain? More in coming posts. Until next time – Cheers!, Zebbie.