Tag: goodhealth

Now Offering Occupational Therapy!

Admin Good Health

At Good Health Physical Therapy & Wellness, we believe in a holistic approach to rehabilitation. We’re committed to providing comprehensive care tailored to your needs, so we are thrilled to announce that we now offer occupational therapy (OT) as part of our services. By integrating occupational therapy into our practice, we can address a wider range of needs and better support your healing.

What is Occupational Therapy?

Occupational therapy is a vital health profession focused on helping individuals regain independence in their everyday life activities, or “occupations”. This includes any meaningful activity that a person wants to accomplish, including caring for yourself or your family, managing house chores, working, going to school, sleeping, and participating in hobbies, among many others. Occupational therapists assess and treat a range of physical, emotional, cognitive, and social challenges to improve your overall quality of life.

Meet our Occupational Therapist, Emily Randall, OTR/L!

My name is Emily Randall and I am a practicing Occupational Therapist at Good Health. In this post, I want to share with you my qualifications as well as insight into my treatment style.

  • Master of Science in OT from San José State University
  • Bachelor’s degree in Spanish and communications from UC Davis
  • Experience in inpatient rehabilitation treating patients with stroke, traumatic brain injury, amputations, COPD, and post-orthopedic surgery.
  • Experience in inpatient behavioral health administering cognitive evaluations as well as providing group and one-on-one treatment.
  • Believes in mind-body approach to care. Trained as a mindful movement and dance group facilitator and led classes at hospitals, treatment centers & jails.
  • Passionate about providing treatment for adults in habit training, chronic pain and fatigue management, cognitive therapy, neurological rehabilitation, sensory integration, ergonomics, and adaptive equipment evaluation.

Through a combination of mindful movement techniques, neuromuscular movement re-education, health promotion, nervous system regulation, and therapeutic activities, my evaluation and treatment approach centers around improving body awareness and increasing independence in daily activities. In treatments I address physical, cognitive & emotional symptoms to support patients in establishing healthy functional habits and building skills to better manage chronic pain and illness.

I collaborate closely with patients to create a comprehensive care plan that aligns with their goals. If you are curious, you can learn more about occupational therapy and the services OT offers on this page.

Get Started Today!

If you believe you could benefit from my services, please don’t hesitate to call us at 503-292-5882. Occupational therapy appointments are available with Emily at our Northeast and Southwest Portland locations.

Hours: Tuesdays 8:00am-6:00pm | Fridays 9:00am-6:00pm at NE Location – 4943 NE Martin Luther King Jr. Blvd, Portland, OR 97211

Hours: Wednesdays 8:00am-6:00pm | Thursdays 8:00am-6:00pm at SW Location – 4475 SW Scholls Ferry Road, Suite 258, Portland, OR 97225

Taming the Zebra Excerpt 3

Admin Good Health

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

Admin Good Health

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.)

Taming the Zebra – Excerpt 2

Admin Good Health

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)

Fibroblasts and the ECM (Extracellular Matrix)

Those patients with a structurally-compromised ECM – whether from collagen or proteoglycan
abnormalities – often demonstrate the impaired connective tissue function that we see in
connective tissue disorders (Hypermobility Spectrum Disorder, EDS, Marfan’s Syndrome, etc).
Recent research has proposed that different types of EDS can be attributed to different disorders in the ECM. This research has further identified a common cause of fibroblast dysfunction amongst all subtypes of HSD/EDS. Fibroblasts synthesize collagen, create the architecture of the ECM, and play a role in regulating inflammation. So, if fibroblasts do not work properly, neither will the ECM or any system that depends on the ECM.

For example, Malek and Koster (2021) proposes three factors contributing to the connective
tissue dysfunction: receptor interaction, integrin switch abnormalities, and fibroblast dysfunction.

The first issue is a failed interaction between collagen and its receptor, which seems to be
dictated by what type of subgroup of EDS the patient may have. For example, classical EDS is
associated with dysfunction in the type V and I collagen components of the ECM.

The second factor, the integrin switch, is common in other HSD/EDS subtypes. Here, when a
system recognizes the dysfunctional collagen-ECM adhesion, in response, fibroblasts may
compensate by encouraging the cell to adhere to different structures, like fibronectin rather than collagen, as it goes into “survival mode”. This will, unfortunately, feed into the dysfunctional fibroblastic activity.

The third factor concerns dysfunction found within the fibroblast itself. Not only is there an issue
with the fibroblast itself due to the genetic variation suspected, but HSD/hEDS is proposed to
additionally have issues with cell adhesion in the ECM due to the dysfunctional fibroblasts.
Impaired cell-ECM adhesion further impedes the fibroblasts from being able to regulate
homeostasis within their environment (the ECM and connective tissue).

A newer body of research offers that the pathomechanism of the HSD/EDS spectrum as
a whole may be linked to three stages of dysfunction. First, the specific type of EDS or
HSD will dictate the cause of failure between collagen and its receptor. Second, the main
types of HSD/EDS show a response of the integrin switch that recognizes the faulty
collagen-ECM connection and goes into survival mode, binding other ECM ligands
rather than collagen in an attempt to maintain homeostasis and prevent cell death. The
last stage is dysfunction within the fibroblast itself in hEDS, causing abnormal
connective tissue make-up.

Mechano-Sensitivity and Load Tolerance

There are downstream effects on the ECM structure and function due to altered signals when
cells cannot adhere in the usual way or when the structure of collagen is altered. One
downstream issue is increased “mechano-sensitivity”, which is a response to a mechanical
stimulation on the structure.

The ECM in those with EDS has been found to tolerate much lower loads before cells separate
compared to normal ECM. In normal conditions, the ECM responds to loads by becoming
stronger. More research is needed on how the ECM responds to loads in patients with EDS.
Strengthening studies on patients with HSD/EDS report improved strength, pain, proprioception, perceived function of daily living, and stiffness of joints and tendons, indicating that those with HSD/EDS can benefit from strengthening exercises (see Chapter 19). There is a relatively high dropout rate in the studies and we cannot rule out discomfort with the prescribed exercise program as one of the challenges. It is possible that new parameters for strength exercise progression will need to be created that are specific to HSD/EDS, recognizing the difference in ECM response to load. At this point, anecdotal evidence suggests starting with lighter loads/weights and progressing more slowly than standards set out by the American Academy of Sports Medicine with a lower maximum load at the end of the progression to prevent iatrogenic injuries. This may show a more positive response to a strengthening program as there is less load imposed on the ECM with a slower acclimation period, allowing the compromised ECM to adapt more efficiently.

Basics of EDS – Part 2

Admin Good Health

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

Admin Good Health

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

Admin Good Health

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 #5

Admin Good Health

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 four 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 the sensitized nervous system? The model we use is the Calm Nerve House and the basic pillars supporting the house are Pain Education, Sleep, Exercise and Pacing. However, inside the Calm Nerve House there are a number of other self-care techniques which can be calming. Here are a few: 

MASSAGE

There are many kinds of massage therapy. It is wisest to seek out a licensed (which means trained) massage therapist. As a general rule, massage that hurts is NOT helpful for a sensitized nervous system. Firm but gentle massage though, a session aimed at relaxing you can be very soothing. 

SMOKING CESSATION

 

There are several ways in which smoking can increase pain levels. First, smoking floods the lungs and the blood stream with nicotine which is a stimulant. This leads to a nervous system even more on edge. Additionally, besides the damage done directly to lungs which most people are aware of, smoking floods the lungs and blood with carbon monoxide. This compound attaches to the red blood cells whose job is to carry oxygen to every part of your body. So, besides the risk of cancer and lung disease, smoking has the negative effect of depriving vital oxygen to bone, muscle, connective tissue and nerves. 

DIET

While we will not attempt to give specific rules about diet here, it is very wise to remember that the health of the nervous system depends on good nutrition. There have been some powerful studies done over the last few years looking at what the best diet is for humans, and a good general rule is the adage coined by popular author John Robbins: Eat food, not too much, mostly plants.

Another tip is to decrease caffeine consumption. Caffeine is a nervous system stimulant and will tend to turn up the volume on a sensitized nervous system. 

MEDITATION

In 1975, Herbert Benson MD published “The Relaxation Response.” Dr. Benson showed that relaxation techniques such as meditation have immense physical benefits, from lowered blood pressure to a reduction in heart disease. In his book “Full Catastrophe Living” Dr. Jon Kabat-Zin describes positive results achieved with chronic pain sufferers employing mediation and mindful techniques. Virtually every religious tradition teaches a meditation technique as a form of prayer, but meditation does not need to be a religious practice. (And you don’t have to sit cross legged.)

SELF TALK (THOUGHTS AND BELIEFS) 

Our thoughts, and what we choose to believe, have a strong effect on our nervous system and can either increase or decrease stress leading to increased or decreased sensitization. One of the most single toxic beliefs you can take on is: “This pain will never get better.” A trick is to say “cancel” whenever you think this or any other negative declaration. Then work to replace this thought with a positive one such as: “This will pass.”, “I can handle this.”, or “I am getting a little bit better each day.”.   A counselor or trusted spiritual advisor is often an extremely important part of your care team and can help with beliefs and self-talk. 

HUMOR

Have you ever noticed that you cannot simultaneously feel depressed or anxious or overwhelmed by pain and having a good belly laugh? This is because laughter floods the brain with natural pain killing chemicals (neurotransmitters). So, we recommend that you make funny movies, people who make you laugh, funny stories, jokes and stand-up comics a regular habit. Humor helps, and that’s no joke. 

In coming posts, we will look at other topics including exercise and hypermobility spectrum disorder/ hypermobile Ehlers-Danlos Syndrome. 

I would like to thank Dr. Mark Melecki PT for his assistance with this series which relied heavily on materials he compiled for his physical therapy doctoral project.

Until next post, Cheers! 

Zebbie 

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

Admin Good Health
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.

What is the difference between Kinesio®tape and athletic tape?

Admin Good Health

Cueing vs stability
Kinesio® tape is stretchy compared to athletic and Leukotape®. Each are great and beneficial, but for very different purposes.

The stretchy quality of Kinesio® tape provides cues for better joint alignment and position, muscle activation, and posture. As your body moves into these positions, the tape will stretch, giving you a cue to reduce the tension of the tape and return to the better posture and alignment. The stretch of the tape can also be used to help lift the skin, allowing more blood flow. It has been shown to help reduce swelling and help with soft tissue healing.

Other kinds of more traditional tape are used for stabilization. Because of its less stretchy nature, athletic tape will prevent movement into poor positions all together, not allowing you to move out of a certain alignment.

How do you know if Kinesio® tape or athletic tape would be best for you?

Kinesio® tape to help prevent elbow hyperextension

Leukotape® to keep the arch lifted and prevent twisting the ankle

The best way to know would be to see a physical therapist to assess what is happening with your posture or joint alignment. We are trained in the different techniques, patterns, and ways to cut and apply the tape to provide the best benefit and proper purpose of the tape.

For a quick answer though, if you are looking for more stability like a temporary brace, then athletic or Leukotape® are best. If you are trying to retrain yourself to use the right muscles and maintain a certain posture or alignment, then Kinesio® tape is best.

 

 

We recommend seeing a physical therapist for the other more medical applications of Kinesio® tape such as to reduce swelling or increase blood flow to an injured area for healing.

A physical therapist at Good Health Physical Therapy & Wellness is always happy to provide more information or assess your needs to reduce or prevent pain and injury