Links to excellent articles!
Dr. Pradeep Chopra – Pain Management Specialist
- 2017 Presentation (PDF) – “Management of Complex Pain in Children and Adults with Ehlers-Danlos Syndrome”
- Dr. Chopra’s Blog on EDS (link) which contains excellent quotes that put EDS into perspective such as:
Before I go any further, I would like to point out that EDS is not a disease. It is another form of the human body. Much like there are tall people and short people, black-skinned and white skinned people, there are people with weak connective tissue as compared to those who do not.
and another quote from Dr. Chopra’s blog…
There are three underlying issues to understand about Ehlers Danlos Syndrome (EDS). It’s important to understand each of these to better manage EDS.
- The tissue that connects different parts of the body is called Connective Tissue. Tendons, ligaments, capsules around joints, skin are all examples of connective tissue. In EDS, this connective tissue is relatively weak; it can be stretched easily. Anything that gets stretched too much, may stay stretched (hence avoid dislocating or over stretching joints, avoid ‘party tricks’). If this connective tissue breaks, it repairs with scar tissue made up of the same connective tissue but weaker. This explains why scars in EDS are paper thin. It also explains why surgery for joints is not a good idea because the repaired joint heals with even weaker scar tissue.
- Loss of joint position sense. Our body has sensors (called receptors) in joints, tendons, muscles, ligaments, skin that continuously update the brain (‘Central Command Center’) as to the exact position of the joint. Joint position sense is also called Proprioception. Once the brain gets inputs from the joints and the rest of the body, it sends signals to other parts to act accordingly. For example, when we walk, the brain can coordinate our steps, maintain balance and prevent us from hyper-extending or over stretching our joints.
People with EDS tend to have weak joint position sense (proprioception). It is probably because of the constant damage to the joints over time. This loss of joint position sense makes people klutzy, poorly coordinated. They tend to bump in doorways, bump into furniture, drop things often. Having poor proprioception also makes them more prone to joint injuries. Poor proprioception is also seen in toddlers as they first learn how to walk. Their proprioception has not entirely developed as yet.
Dr. Alan Pocinki
- Evaluation and Management of Autonomic Dysfunction in Ehlers-Danlos Syndrome (PPT PRESENTATION)
- Dr. Alan Pocinki’s Paper – Joint Hypermobility and Joint Hypermobility Syndrome (amazing resource!)
Often, people who suffer from hypermobility syndrome are called hypochondriacsor lazy because they avoid many everyday activities, because theseactivities that cause them pain. Most of them don’t look sick and, as a result,friends, colleagues, and even doctors can be unsympathetic. Furthermore, theymay spend years unsuccessfully searching for the cause of their chronic painand other symptoms because many doctors are unfamiliar with hypermobilitysyndrome and its complex set of symptoms. Such long delays and lack ofunderstanding can lead to frustration (with doctors and with daily life), anger,anxiety, and depression.
Dr. Alan Pocinki’s Presentation – “Pseudo-Psychiatric Symptoms in Ehlers-Danlos Syndrome” ( text summary)
Dr. Pocinki began his talk giving a quick overview of the autonomic nervous system and autonomic dysfunction. After a poor nights sleep, many bodies respond by producing extra adrenaline to keep them going (as a side note, this is why clonidine works for ANS dysfunction–it suppresses adrenaline.) The ANS regulates all body processes that occur automatically including sleep. The ANS is classically divided into two subsystems: the parasympathetic nervous system (PNS–“rest and digest”) and sympathetic nervous system (SNS–“fight or flight”).
Dr. Pocinki began his theory of autonomic dysfunction in EDS. There is the concept of an adrenaline reserve. The reserve is the capacity of an individual to deal with stress, and it is not unlimited. The central paradox for those with hypermobile EDS and ANS dysfunction is that the lower the EDSers reserves are, the more exaggerated the stress response is. He used the metaphor of a car. A person with ANS dysfunction is constantly hitting the breaks and gas attempting to get his/her body where it need to be. Instead, this person is getting surges of too much gas/slam on breaks/too much gas/slam on breaks/too much gas….and on it goes. Thus, a person with ANS dysfunction wastes tons of energy regulating body processes that should be automatic.
A sympathetic surge is marked by palpitations, shortness of breath, and a flushed face. Here, the gut relaxes. Conversely, in a parasypathetic surge, an individual will show signs of nausea and chills. Sustained SNS stress leads to pain, fatigue,and dehydration. This sustained stress also leads to depletion from the stressor-over-response cycle. The depletion phase is marked by trouble with concentration, a tendency to avoid tasks, trouble with details, and the like. Further depletion leads to sympathetic activity sufficient to mask pain. That is, the individual’s resources are so depleted that an contradictory response happens–the individual will feel good, and have a lot of energy. He/she will also most likely have trouble sleeping at this phase. Finally, in the sustained parasympathetic response phase, i.e. the “tired but wired” phase, an individual will experience nausea, abdominal discomfort, malaise, fatigue, and lightheadedness. These symptoms will be constant.
Dr. Alan Pocinki’s Presentations (Videos):
Kevin Muldowney – Physical Therapist
- Physical Therapy Protocol for Patients with EDS (video)
Do I have to begin with the sacroiliac joint protocol even though my neck hurts?
Yes! This is difficult to understand, but the sacroiliac joint is considered to be the keystone of the body. This means that if there is a problem with this joint, it will affect the joints above it (low back, mid back, neck, head, shoulders, wrists and hands) and below it (hips, knees, ankles and feet). You should never work on any body part before the sacroiliac joint is stabilized using my exercise protocol. If a physical therapist works on your mid back before your sacroiliac joint is properly aligned, soon after your mid back is fixed, it will be twisted again, causing your pain to return. The reason for this is, that if your sacroiliac joint is not aligned, when you stand up, you will have a scoliotic curve in your spine. This is referred to as an “apparent scoliosis” and is caused by your body’s compensation of the mal-aligned sacroiliac joint below. Until the sacroiliac joint is corrected, this apparent scoliosis will continue to exist. It is the apparent scoliosis which is the major cause of neck pain in most people with EDS. Until the apparent scoliosis is corrected, the neck will continue to have pain. Think of your body as a house. The sacrum and pelvis are the foundation of this house. Your mid back represents the walls of the house and your head and neck are the roof. Your neck can never be aligned as long as your foundation (sacrum and pelvis) is crooked. For those of you who have had treatment for neck and mid back pain and are not getting better, it is probably because the physical therapist did not fix your sacroiliac joint and low back first. Once they address your sacroiliac joint and low back per my protocol in Chapter Two of my book, then you can follow my Neck, Mid Back and Upper Extremity Protocol in Chapter Three to help your mid back pain. After this is completed, Chapter Four outlines exercises for the hips, knees, ankles and feet. By the end of the book, every joint will be stabilized due to these exercises. Click here to listen to my webinar entitled, “Sacroiliac Dysfunction in the EDS Population.”