Problems with pain management are almost always the primary complaint in patients suffering from Ehlers-Danlos Syndrome (EDS).  Much of this pain is musculoskeletal in nature such as a sprain, tendinosis or joint subluxation.  But often our patient's pain complaints are less clear.  This pain can be described as a burning, stabbing pain that moves throughout the body inexplicably and without identifiable causes.  Recent research by Cazzato, et al. has demonstrated that patients with EDS have a very high chance of manifesting small fiber neuropathy in the sensory fibers of their skin.  

Neuropathy is the inflammation or death of nerve fibers in the outer-layers of our bodies.  This is commonly seen in diabetic patients with changes in their blood chemistry.  However it has recently been identified that more than 90% of investigated EDS patients demonstrate evidence of localized small fiber neuropathy.  This has commonly been identified and treated in the fibromyalgia populations with medications such as Neurontin/Gabapentin, Amitriptyline, Pregabalin and Cymbalta.

This type of pain would be classified as neuropathic pain and is very different from mechanical type musculoskeletal pain.  Pain medications like NSAID, opioids and muscle relaxants that are prescribed for musculoskeletal pain are often unsuccessful for treating neuropathically induced pains.  

The Cazzato study reported 19 of 24 EDS patients complained of moderate to severe symptoms consistent with neuropathic pain.  When their research patients were examined via skin biopsy all 24 demonstrated findings consistent with small fiber neuropathy.  

When discussing pain medication with your providers it is important to identify what the underlying pain generators are in order to pick efficacious medicines and interventions.  If your pain is a diffuse burning discomfort that bounces around the surface levels of skin, fascia and muscle you may benefit from a medication specifically targeting neurogenic pain.

Not sure where you pain is coming from or why? That is a great reason to come see a Physical Therapist who can manually test your body and evaluate your symptoms to provide direction and advice about the best course of action. As a Doctor of Physical Therapy with advanced training it would be my pleasure to evaluate and assess what is going on to help you find relief and develop a plan of action that will lead to better quality of life. Email me or call 360-952-3074 to request an appointment today for more information.

~Brian Kitzerow, DPT, CMPT, OCS

We all know that there are several benefits that occur from participating in regular exercise.  But is exercise specifically helpful for the hypermobile type Ehlers Danlos Syndrome (hEDS) population?  And if so, how and why?  

We have good evidence that exercise is helpful for many components of our lives.  It helps with hormonal control of estrogen, testosterone, progesterone and cortisol.  It improves sleep cycles and the hormones involved in regulating our sleep patterns.  It helps improve muscle mass and prevents the loss of bone density. 

Exercise participation is strongly correlated with reductions in stress, anxiety, and depression, and improvements in mood and the sense of well-being.   Exercise is linked with improvements in coordination and decreases in fall risk.  Improvements in cognition, focus, and memory are also linked with exercise participation.  There has been strong evidence demonstrating that unstable joints are improved with exercise and that exercise can reduce daily pain levels.

As you may or may not know, EDS is a connective tissue disorder.  As connective tissue is widespread throughout the body, EDS has wide-ranging effects.  Joints are less stable and have a higher incidence of injury and subluxation.  Balance (or proprioception) is reduced raising the incidence of falls.  Bone density can be effected.  Muscle strength is commonly lower in this population (which some researchers have connected with joint proprioception deficits and others with fear of movement).   Dysfunctional movement patterns are adopted with impaired coordination.  And many different types of pains are experienced.  

But is exercise beneficial for patients with joint hypermobility syndrome (JHS) and hEDS?  Research is suggesting yes for many reasons. Kemp looked at young patients over a six-week exercise course in one of two groups. One group had a generalized strength and conditioning program, and the other group had a more focused joint stabilization exercise program.  Both groups demonstrated decreases in pain levels and functional assessment (roughly 30% improvement!) but the focused group also demonstrated more parental perceived functional gains.  Studies by Sahin, Pacey, and Celenay all found similar responses with improvements in both function and comfort.  A systematic review (assessment of all the available literature that the authors can find) in 2014 also found evidence for the use of balance retraining based exercises.

There is also limited evidence that just like hEDS, classical EDS (cEDS) responds well to exercise.  Moller looked at three cEDS patients who were treated with “heavy” strength training 3 days per week.  Measurements of the patellar tendon demonstrated improved strength of the tendon connective tissues from 1795 N/mm to 2519N/mm (>70% increase in strength).  Energy levels and perceived strength were both improved in all subjects.  And even though these exercise routines were very intensive, pain levels did not increase at the end of the study for 2 of the 3 subjects and were actually lower in the third subject.  

In conclusion, the research is currently very supportive of exercise to improve function and comfort in the hEDS, JHS, and cEDS populations.  It appears that there are better results from emphasizing trunk stabilization and balance based exercises, but all types of exercise studied showed improvements.  It can be very helpful to be treated under the supervision of a physical therapist to oversee a controlled, graded progression of your program, as well as to address existing injuries with manual interventions as they interfere with your exercise program.  Clinical experience suggests that exercise is the key intervention to return freedom, function and comfort in your life.  Though connective tissue may be lax, muscle remains responsive to exercise and strength needs to be emphasized to compensate for ligamentous laxity.

Do or someone you know suffer from EDS? Do you suspect but are unsure? Considering coming to All Ways Well for an assessment from an experienced Physical Therapist. Email me questions or request an appointment online today.

​~Brian Kitzerow, DPT

Pain is a multifaceted and deeply personal experience that can be very difficult to describe and communicate.  Pain itself is a very functional experience that warns us to be careful when we might be injuring ourselves.  We can see how important pain is in the rare occurrences in which a person is born without the capacity to experience it.  This condition is known as congenital analgesia and these individuals have a very high mortality rate as they struggle with repeated broken bones and poor healing rates due to tissue re-injury when they can’t feel that they are hurting themselves.  

It is important to consciously acknowledge that pain is a functional sensation and that when properly manifested and interpreted can be very beneficial to our health and self-care.  Especially when we know what the pain signals we experience mean.  When it becomes too prolific, though, it can be impossible to negotiate recovery on your own.  

Most people are very good at pushing through their symptoms so that they can be functional throughout the day.  Unfortunately, they commonly do this by categorizing unpleasant pain impulses into a single amorphous uniculture they relate to as “my pain”.  Everything from a skinned elbow to headache to stomach cramping gets thrown into the same classification schema with little thought about what each individual signal might mean.  

Though this can be very useful in the short-term, this strategy tends to inhibit long-term recovery because they get re-injured over and over.  Just like in the congenital analgesia population, utilizing this strategy to ignore pain tends to worsen symptoms and pain levels over time because it doesn’t allow healing.  

Unaddressed injuries start to pile up on top of each other and it gets very hard to determine what the pain you are feeling means.  This is similar to driving your car with a flat tire; you will make it a little further and might even make it home, but you will have destroyed your wheel, axel and engine by the time you do.  If you don’t address the underlying problem (your tire is flat) you can’t take care of the other problems (your speed has slowed down, the ride is bumpy and there is a horrible smell from your car starting to burn).  

The original centrally driven model of pain is usually attributed to Descartes and was a simple circuit-like reaction where pain was stimulated at the site of injury and went directly to the brain with no control for grading or interpretation.  We now know that this is inaccurate.  Pain is an experience that our brains create.  This was detailed in the neuromatrix theory described by Ronald Melzack in the 1960s and expanded upon by many highly insightful researchers like Lorimer Mosely and David Butler.  

Our brains absorb all the thousands of input signals coming in to them at one time; the sensation of that needle poking our arm, the comforting smells of cookies baking, the angry, stern looks of our employer speaking to us, the full, satiated feeling in our stomach, the sound of breaking glass.  After that the brain filters these inputs through our previous learned experiences (the last time I saw a heavy hammer falling it landed on my foot or I was brutally spanked after I heard that crashing sound as a child and I broke the dishes).   It then decides what it should bring from the unconscious experience into our conscious awareness.  If the brain decides that the input isn’t relevant to our survival it won’t tell us about the pain stimuli.  We commonly see this in imaging studies where 60-70% of the healthy population have a hip or spine injury that they are not impacted by or aware of it in the slightest.

Sometimes the brain and sensory neurons become over-responsive at interpreting inputs as pain.  What was previously benign and safe (like light touch or a gentle walk) can become very painful.  Even when there isn’t any tissue damage.  This is termed a Central Pain Processing Dysfunction and recovery requires treatment to desensitize the central nervous system and remind it of what good and bad stimuli should feel like when determining whether you should hurt or not.  

There has been a swing in pain medicine to treating centrally driven pain with a technique that some psychologists utilize to treat fear and anxiety known as Acceptance and Commitment Theory (ACT).  This approach emphasizes focusing on goals and accepting that pain is an inevitable consequence to reaching them.  For instance, I know that walking two miles is going to make my back hurt worse afterwards, but I enjoy walking and need to get to the store. So I am going to accept that I will be pushing myself beyond what my body is telling me it is capable of and commit to walking anyway (or you could have been more insightful to what your body was saying and walked one mile, rested and then finished with no increase in pain and a progressively stronger body).

 This approach however ignores that at the root of central pain processing dysfunctions, are usually initial and subsequent injuries that stimulated the brain to become hypervigilant in the first place.  This is particularly true in the Ehlers-Danlos Syndrome (EDS) population who always have underlying musculoskeletal dysfunction contributing if there is a central pain processing dysfunction.   ACT based treatments for addressing pain are similar to driving home with that flat tire.  Sure, you can accept that your tire is flat and that you are damaging your car driving it home instead of addressing the flat tire, but your car isn’t going to benefit from it.  In the same way your body won’t benefit from ignoring your pain instead of analyzing what the pain means.  

Cognitive Behavior Theory (CBT) is a psychological technique that works very well with pain medicine and particularly well with the EDS population.  This theory suggests that you cognitively assess and investigate what you are feeling. You then decide on an action based on the logical conclusions you make from what the pain is trying to communicate to you.  

 Very often when we cognitively assess our pain we can tell that this is a very short term and temporary complaint that probably won’t be there tomorrow, such as a sharp, brief stab in the shoulder or a sore thigh muscle.  These are things that we can consciously let go of as they are not serious and are unlikely to affect us long-term.  In effect, we are performing on a conscious level the duties that our unconscious pain processing centers should be performing unconsciously.  This has very strong benefits to reducing stress and anxiety because we know these pain experiences will be temporary and are not threatening to our wellbeing.  

Other times, when we utilize CBT, we recognize that a pain is either more severe, or has been a consistent problem that might indicate damage to our tissue in some way. In this case we are in a position to cognitively assess what kind of pain we are feeling and what that might indicate.  Is this a tendon pain that indicates we aren’t stabilizing our shoulder with our scapular muscles and our rotator cuff is irritated?  Do we see less pain (and by default less tissue damage) when we lift a little less? Or engage our low traps before lifting the arm?  When our rotator cuff is more active and strong, is this pain consistently less?  Or instead of the shoulder is this a burning, nervy pain around our skin and fascia that indicates small fiber neuropathy (as seen in fibromyalgia and very strongly in the recent EDS research)?  

In that case we could benefit from talking to our doctors about a neurogenic pain medication and lowering our baseline inflammation levels.  Is this the headache that starts at the back of our skull and rolls over the skull to sit behind our eyes?  In that case we are probably scrunching the circulation of our greater occipital nerve and need to relax our neck muscles and change our posture, or strengthen our core and shoulder muscles to improve our ergonomics.

CBT-based approaches gives back to you the control to manage your symptoms instead of being placed in the position of a passive victim.  There will be some pains that are unresponsive or have so much complicated noise going on that you will need a good PT, MD or body worker to help with them, but commonly you can have a lot of control over your daily experiences.  It is just important to know what the different “flavors” of pain signals suggest.  Be cognitively aware and assess your symptoms as they come up.  Some will be transitory and unimportant.  Others will be more important to listen to and adjust the intensity of how you’re moving and working at in order to allow your body to heal.  Your physical therapist can help you negotiate what different pains mean and how to manage them successfully. ​

Brian Kitzerow is a Doctor of Physical Therapy at Good Health Physical Therapy with offices in both SW and NE Portland. Interested in learning more about your own pain? Consider seeing Brian at Good Health or coming in for Acupuncture at All Ways Well today!

I am very excited to announce that my husband, Brian Kitzerow, DPT, is now working at Goodell PT in SW Portland and is accepting new patients!  We are very excited that he is working in an outpatient setting and that we can share referrals now.  I was so excited that I had to blog about it, and I can't wait to see what our collaborations bring for our patients.

With a strong background in biochemistry, a long history of physical activity including soccer, track & field and martial arts, he has the education and experience to excel in his work and I can tell you that he does.  He has a special interest in chronic and neuropathic pain and is enjoying working with ESD patients in particular - a specialty at Goodell.  ESD stands for Ehlers-Danlos Syndrome, an inherited connective tissue disorder, so if you know anyone with chronic pain, EDS, neuropathic pain or someone who has been in a car accident lately, please think of sending them his way with Rebecca's double thumbs up.

I also have to share that I believe the combination of Acupuncture and Physical Therapy can be pretty amazing.  It can be difficult to commit to so much regular treatment, I understand that (from experience), but if you can commit to the time required to combine therapies, your results will be accelerated and longer lasting.

Acupuncture can straighten out your energetic system, decrease stress and pain, and re-habituate your body to a state of balance.  Physical Therapy will balance the body physically, improve strength and flexibility, and give you the tools you need to heal and continue your preferred activity level without incurring new injury.  Its a winning combination because the two approaches are just the right amount of different and complementary.

I feel like a personal testament to this powerful combination because while you may not think it to look at me, I've had a lot of injury in my life.  I've had tendonitis, bursitis, meniscus frays and tears, ACL tear and knee surgery, piriformis syndrome, dislocations, subluxations, back spasms and a motor vehicle accident.  I'm one of those people that dreads filling out new medical forms because there is never enough room for all my injuries on there and because the doctor usually gawks at my list.  

This long list, however, means I am very well acquainted with pain and pain treatments experientially and professionally, and I have no problem sharing that my best results have come from combining Acupuncture and Physical Therapy. That is why I am so excited to be able to refer patients to my husband in this setting because I know he is top notch and an excellent physical diagnostician.  That is also why I often recommend Physical Therapy - its effective, covered by insurance, and gives YOU tools that you can take home with you and apply to the way you use your body for years to come.

So with this note, please welcome my husband to the world of outpatient clinics, and if you have a physical therapy need or know someone who does think about sending them his way!

Until next time,
~Rebecca