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.)

Is Yoga good for patients with HSD and hEDS?

2022.10.04
Yoga Zebras

Hello, Zeborah Dazzle, PT, WWF here. I am the spokes-zebra and patient educator for Good Health Physical Therapy and Wellness. In this post let’s consider a question that arises fairly often in our clinic:

Is yoga good for patients with hypermobility spectrum disorder (HSD) and hypermobile Ehlers Danlos Syndrome (hEDS)?


Many doctors who know some about HSD/hEDS will give the advice to never stretch. Included in this advice is to not do yoga. This can be confusing since stretching so often feels so good to us zebras, and, we are SO good at it.
All of us with HSD or hEDS know that it is a connective tissue disorder. Our connective tissues deform more easily and recoil back to their normal length more slowly. As a result, we are more prone to strains and sprains. And because our joints do not always have a clear endpoint to movement, this can affect our sense of where our bodies are in space (proprioception) affecting coordination and sometimes balance. Additionally, our loose connective tissues often hurt. Pain can feed back through the nervous system causing our muscles to lose strength and muscle tone. This along with the stretchy tissue puts us at risk of popping joints out of their best alignment (subluxation).

So, does all of this mean we should not do yoga? Not necessarily. Let’s first consider what yoga is for a moment. Yoga is more than just stretching. Yoga is an ancient Indian philosophy of self-awareness and self- exploration. Just one part of yoga is the practice of asanas, the practice of physical postures. There are many different approaches to asana practice, some fast and some slow, some stretching to the end of the range and some not, some more focused on meditation and some less. Some approaches to yoga will work well for people with HSD/hEDS and some not. I recently came across a new book by a physical therapist –Libby Hinsley, PT, DPT, C-IAYT — who has hEDS and is also a yoga teacher: Yoga for Bendy People, New Degree Press, ISBN 979-8-88504-118-8, copyright 2022. In this new book, Libby does a really good job of exploring the pros and cons of yoga. She writes:

In general, an asana practice that emphasizes mobility and performance is not likely to go as well… Extreme yoga postures may be fun from an acrobatic point of view, but in the context of yoga, I’m interested in the why. Why include the splits in your practice? What benefit does it bring, and how does it help you to reach your ultimate goals? Unless you are a circus performer, it’s not that useful. Life mostly happens in the mid-ranges, not at end ranges. Most of us aren’t training for the circus; we’re training for life. Pg. 94

I love this and agree with this. Hypermobile connective tissue does not need to be stretched hard to the end of the range for prolonged periods. In fact, more than one patient has come in and related that getting too competitive with their yoga stretching caused far worse problems even though it initially felt good.


Hard and competitive stretching is the big ‘no’ of yoga. What are the yeses?’

Yes to yoga used to explore. Yoga done slowly and consciously can open the practitioner to whole new levels of sensation from their body. And yoga done mindfully can help improve proprioceptive sense meaning improve coordination and balance. Yes to yoga done with awareness of breathing. Many with HSD/hEDS know that anxiety is a common companion condition. All of the reasons for this are not known. One suspected reason though is that the decreased clarity of sensation for end of joint ranges throughout the body becomes alarming to the nervous system and sets it on edge. This may lead to anxiety. Deep breathing and careful attention to postures combats the nervous system’s alarm. Yes to yoga in the mid-range. Postures held against gravity in the mid-range helps to build the stabilization around the joints.


It is always best to work with a yoga instructor who is certified and let them know about your condition when you start. After to this, the single most important rule to follow is this: if it hurts, stop. Do not let anyone push you in to an exercise that your body is telling you is wrong for you. Oh, and if you are looking for more information about this, check out Libby’s book. Let me know your thoughts on this subject in the comment section of our Facebook page. I hope soon to give you some previews of Heather Purdin’s upcoming book, Taming the Zebra. Until then, Cheers! Zebbie


Thanks to Dr. Mark Melecki, PT for his assistance in preparing this post.

Pain Education Series #5

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 

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

Pain Education Series #3

9/6/22 Pain 3


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 two 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 pain education and sleep.


PAIN EDUCATION
Recent studies have shown that pain education (just the type of thing you are getting in these posts) can
have a positive effect on pain. When patients understand what is happening in their bodies, this helps to
lower fear levels which in turn helps to calm the brain. Additionally, understanding the different factors
which can add together in the brain (See diagram) to sensitize the brain, can be a big help for patients
on their healing journey. For example, knowing that old emotional traumas can teach the brain to be
extra alert for potential injuries, can help guide a patient toward getting help with that trauma. And
knowledge of the other kinds of stresses which sensitize the nervous system can lead the patient to
problem solves ways to lower those stresses. Knowledge is power, especially when we use that
knowledge to guide our decisions.
SLEEP
A fatigued nervous system is a sensitive nervous system, so sleep is crucial to pain control. There is no
one perfect piece of advice to help with sleep, but below is a general list of tips.
Lifestyle
 Get regular exercise each day, preferably in the morning. There is good evidence that regular
exercise improves restful sleep and overall health. This includes stretching and aerobic exercise. Try
to limit exercise 3 hours before bedtime.
· Get plenty of sunlight outdoors, particularly later in the afternoon.
· Use the evening hours for settling down. Avoid challenging or stimulating activities and avoid bright
lights in the evening 2-3 hrs. before bedtime.
· Try to avoid naps during the day.
· Pick a regular bedtime and wakeup time and stick to them throughout the week.
· Avoid all bright screens including phones, tablets, TVs, or other tech devices 1 hour before going to
sleep.
· Once you are in bed, relax from head to toe and guide your mind to pleasant thoughts.
· Don’t command yourself to go to sleep or “clock watch”. This only makes the mind and body more
alert.
· If you lie in bed awake for more than 20-30 minutes, get up and go to a different room to do a quiet
activity. Return to bed when you feel sleepy. Do this as many times during the night as needed.
Food and Drink

 Although small snacks can help you get to sleep, don’t eat a large meal about 2 hours prior to
sleeping.
 Limit how much you drink at night to reduce your need to get up to urinate, but don’t go to bed
thirsty.
 Stop all caffeine consumption no later than 6 hours before you are planning on going to bed.
 Avoid all forms of nicotine prior to sleeping including cigarettes, chewing tobacco, and vaping.   
 Avoid drinking alcohol before bed.
Environment
 Keep your bedroom quiet, dark, and cool. Try using a sleep mask and/or earplugs to help you sleep.
 Run a fan or other steady “white noise” during the night if noises wake you up.
 Reserve the bed for sleeping, sickness or sex only. Do your reading or TV watching in another room.
 Keep your hands and feet warm. If needed, wear warm socks and/or gloves to bed.
 Wear loose-fitting nightclothes. The more comfortable you are, the better you will sleep.
 Try not to sleep with disruptive bed partners such as your children, pets, or spouses.
Until next post – Cheers!
Zebbie

Pain Education Series – #2


Hello,

My name is Zeborah Dazzle, PT, WWF, and I am the new spokes zebra and a patient educator for
Good Health Physical Therapy. I am posting some educational pices in between seeing patients, and we
have been discussing pain, especially chronic pain, which is something very familiar to those of us with
EDS and hypermobility.


I finished my last post by describing how the nervous system can become overly sensitized so that the
pain perception being created is no longer in proportion to the injury in the body. As I described, the
nervous system with the brain at the top, is the sensory and control system of the body. Pain is a perception that is the brain’s estimate that the body is being harmed. And it does not always make the
estimate accurately.


When an area of the body has been injured repeatedly, the local nerves can become overly sensitized
and send too many signals to the brain – out of proportion to the injury. This is called peripheral
sensitization. Similarly, there are connector nerve cells in the spinal cord that can get overly sensitized
and allow too many signals to pass to the brain. And finally, the brain is a learning organ and will make
it’s estimate of potential injury based on past experiences and current stresses. Sensitization of the
spinal cord and/ or the brain is called central sensitization. Practically, this means that the nervous
system itself may be as much or more of a problem than any injury to the body such as sprains, strains
or hypermobile joints.


When nerve danger signals hit the brain, they are interpreted by a number of areas of the brain working
together. If the person has a past history of being injured or of physical or emotional stressors, the brain
may over interpret the signals and create too much pain or pain over too large an area. (See the
illustration of different factors that can cause the brain to overestimate.)


How do we get the nervous system to calm down and stop blaring its warning messages (pain)?
One avenue to calm the nervous system can be medication. All medications have their pros and cons, so
we believe that it is very important that you work with your primary care provider to find the right
strategy of medications to use – even if you are just using over-the-counter medications. Now, as you
probably know, we physical therapists do not prescribe drugs though and we have some other
strategies.


It can be useful to look at non-drug approaches to calming the nervous system as being like a house: the
Calm Nerve House. All solid houses have sturdy pillars which hold them up and so does the Calm Nerve
house; while there are many healing approaches in the Calm Nerve House, the pillars are:


 Pain Education – understand your pain and how it works. Knowledge gives power. (This is what
I am working toward with these posts.)
 Sleep – a fatigued nervous system is a nervous system on edge
 Exercise – “motion is lotion”
 Pacing – too much lotion creates commotion


We will talk more in-depth about each of the pillars and some of the content of the Calm Nerve House in
coming posts.


Until next time – 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.

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