Coming Out My Personal Experience with Ehlers Danos Syndrome EDS

by Ram

Between Clouds by Melina Meza

Recently one of our readers of the blog posted a query about Ehlers-Danlos Syndrome (EDS) and Baxter provided the description of the disease and the precautions that needed to be taken while doing any yoga poses (see Friday Q&A: Elhers-Danlos Syndrome (EDS) and Yoga). Now here is a true account of an individual who has this genetic disease and who continues to grow strong through various modalities. Yes, yours truly has this genetic disorder. The medical diagnosis of this condition was made when I joined the Mayo Clinic for my post-doctoral research. Until then, I was the “sponge kid” to my peers in school and college.

I possess typical EDS characteristics, including hypermobile joints, swan neck deformity of fingers (the joint closest to the fingertip bends toward the palm while the nearest joint to the palm bends away from it), skin hyper-elasticity, fragile skin that tears easily, redundant skin folds, easy bruising, the Metenier Sign (eversion of the upper eye lids), the Gorlin sign (ability to touch the nose with the tongue), flat feet and passive bending of the wrist or thumb to touch the forearm. People loved to shake my hands and feel the “sponginess” of my palms. They were fascinated seeing me touch the nose with the tip of my tongue or extend the skin folds of my elbow to a couple of inches or hold the palms behind the back in a reverse prayer pose (Pashchima Namaskarasana) and extend the palms all the way up towards the rhomboid muscles.

But all of the above-mentioned stunts also came with a price. I could bruise myself very easily, as evidenced by unexplained swelling and ecchymosis (escape of blood into the tissues from ruptured blood vessels) on the palm, hand, eyes, thighs, or trunk. What for most individuals may seem to be a gentle pat on the back may result in an internal bruise for me. What may seem a gentle hit by any object will produce a blood clot and swelling in that local area for me. Opening lids from bottles may be very simple task for ordinary individuals, yet not only is it a herculean task for me, but I end up bruising my palm. If my fingers, hands, or feet encounter any rough surface, it is common to see that area swell up, turn bluish, and become painful. My grip is very weak due to the soft skin on the palm. As a result it is tough for me to hold something with a strong grip. I dread contact games like cricket, soccer, basket ball, and volleyball, among others, because invariably I end up with a multitude of internal and external bruises together with swollen areas all over the body (fluid accumulation due to the impact on the soft tissue). In one such incident involving soccer, I was the goalkeeper and saved several goals by directly heading the ball. After few such headings, my forehead swelled abnormally and I fell unconscious. It took nearly a week for the fluids to get absorbed completely.

In the early 1990’s I moved to the USA and to the Mayo Clinic to pursue my postdoctoral work. It was around this time that I started experiencing unexplained pain in the joints, probably due to excessive stretching. Furthermore, due to deficiency of collagen the ends of my bones may have been rubbing on one another irregularly because I started suffering from acute pain in the wrists, finger joints, heel, and knees. Despite possessing a fragile body condition, I agreed to go with my colleagues for what would be my first and last ski trip. At the ski resort, I had to grab hold of the rope tow to get pulled uphill. A combination of the wetness on the rope and my poor grip led me to release the rope halfway up and there I was falling and rolling down the snow slope. I ended up with swollen bruises and blood clots all over the body. This led to visits to several physicians and specialists who ordered blood tests for several parameters. All the specialists were surprised to see numerous bluish, reddish patches and clots all over my body. Finally, the rheumatologist confirmed that I suffered from EDS-Type 2. I became a poster-boy for the medical students and for the rheumatology clinic. I was advised to avoid contact sports and extreme gym exercises. Despite resorting to non-contact sports, I was always suffering from constant chronic pain. I have had this pain for so long that it sort of defined who I was and I had resigned to the fact that I to live with it.

Our move to Marin County in early 2000 provided my much needed transformation. I was introduced to Ayurveda and also found a yoga studio close to my home. The yoga practice required me to join the beginner’s level, however, my overly flexible joints served as a blessing as I was able to move seamlessly through several yoga poses, some of which required many advanced variations. Soon I transitioned from a beginner level to a mixed-level class, where we were regularly introduced to harder postures. What seemed to be a blessing in the form of hyper-flexibility now proved to be extremely challenging, as most of the teachers teaching the advanced classes were either devoted Iyengar teachers or belonged to Pattabhi’s Ashtanga yoga lineage. While my former class required props and alignment, the latter required strength, endurance, and core power. I experienced lot of problems with the rope-supported asanas in the Iyengar class due to poor grip, and I could not jump in and out of the continuous Surya Namaskara flow sequence in the Ahshtanga yoga class due to weak grip on the mat. Since my teachers were not aware of EDS and failed to see my condition, my yoga practice always ended with severe pain in the joints and limbs, and blood clots in several areas. While some of the teachers advised me to stop my practice, others suggested that I move to even higher-level class.

I soon realized I was responsible for my own safety and learned to become my own teacher. I used extreme caution to go very gradually into poses that required exceptional flexibility. I developed the qualities of dharana (focus) and dhayna (total awareness to the pose), watching every step and alignment, and taught myself to go to the edge without hurting or experiencing pain (see Samyama: The Trinity of Dharana, Dhyana, and Samadhi). I started focusing more on poses that strengthened and stabilized my major joints. In standing poses, including Warrior poses among others, I placed a lot of emphasis on engaging/contracting the muscles around the circumference of the joints while performing the pose. Despite being in a mixed-level class, I performed several of the poses by placing a block between my thighs in all of the standing poses. To prevent the block from falling in these standing poses and during Sun Salutations, I had to engage all the muscles starting from my ankles all the way up to my hips. I applied the same idea of contracting the muscles to my ankles, knees, hips, shoulders, elbows, and wrists as well. Instead of going deeply into the pose right away or twisting recklessly and trying to impress the teachers, my goal was to strengthen all my vulnerable joints. In the process I was limiting the depth of the range of movement, but I was at the same time experiencing far less pain and I was more into the ‘flow” (see Positive Psychology vs. Yoga Philosophy).

In asanas that required intense stretching, such as Parsva Uttanasana (Intense Forward Stretch), Utthita Parsvakonasana (Extended Side Angle pose), and Utthita Trikonasana (Triangle pose), I played safe by not overstretching muy front leg hip and knee joints. While leaning into the full pose, I contracted and firmed the muscles around my hip (of the front leg) and knee joint. I maintained this feeling of strength while staying in the pose and on my way out. Yes, by consciously contracting those joint, I do not go far down (and the teachers did not like it, as it was an “advanced series”) but I got to be in the pose without suffering undue pain and, most importantly, I was not hyper-extending. Suffice it to say that over the years my asana practice has now metamorphosed into a stage where the focus is not on seeking a “macho” body balancing between two rocks perched over a deep gorge. I have not only gained experience and inherently improved my skill level, but my practices have taken my skill sets to a higher state of positive experience, contentment, and a sense of accomplishment.

A combination of Ayurveda, a skillful yoga practice, pranayama, and meditation has helped me to cultivate pratyahara and find my true self. These days, whether in my home practice or in the classes I teach, I experience far less pain and very few bruises. I do develop some clots occasionally but it does not bother me anymore. I have stopped questioning why I possessed this body as I have started experiencing a positive mental-emotional balance that has resulted in improved health and happiness. I love who I am!

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Coming into Balance How Stress and Relaxation Work Together

by Baxter and Nina

Mirror Image by Melina Meza

So, you’re lying on a beautiful beach somewhere, feeling the warmth of the sun on your skin and listening to the sound of waves lapping at the shore, and you’re feeling totally comfortable and very relaxed. So what is happening to you? Is this the relaxation response? The rest and digest state? Conscious relaxation? Or what?

Another time you’re sitting alone in your house, meditating on your breath. Your knee hurts a bit. Your thoughts seem wild, and you feel fidgety and restless. But you keep coming back to your breath, and after several minutes your mind begins to settle and quiet. What’s happening to you now? And how is this different than being on the beach?

Or, let’s say one night you’re driving your car down a dark, winding road through a forest when suddenly a deer bolts into the road. Your heart begins to pound and your breath speeds up as you quickly try to take evasive action. Is this the stress response? The fight or flight response? On another night, you’re meeting someone you’ve just started dating. When you spot them on the street coming toward you, your heart begins to pound and your breath speeds up. It feels kind of like stress, but in a good way—you know, exciting. What’s going on there?

As we have been delving into the topics of stress and relaxation, we’ve found there’s some confusing terminology out there in the literature and even here on our own blog! So it seems like a good idea to try and define once and for all some of terms that have been most commonly bantered about. To start, let’s take a look at the following terms to get clearer on what they mean:

1. Stress Response
2. Fight or Flight State
3. Relaxation Response
4. Rest and Digest State
5. Conscious Relaxation

Stress Response. This term describes the response of your mind and body when you are faced with a challenge. Sometimes the response is to a real or perceived threat, ranging from serious life or death situations to stressful situations like doing your taxes or getting lost. Other times the response is to a positive challenge, such as running a race, falling in love, brainstorming ideas, or creating a work of art. The stress response increases the activity of your sympathetic nervous system, speeding up your heart and breath rates, and dilating your pupils to get you ready for action. When the stress response is at its extreme, you shift into the flight or fight state.

Fight or Flight State. This term describes the state of your nervous system when your sympathetic system is fully operational, and generally you are actually in danger, threatened, or think you are in danger. For example, if you are about to get into a car accident, your nervous system sends quick signals to your adrenal glands to release adrenalin, unleashing a rapid physical response evolved to get you to safety. (See below for details.) 

Relaxation Response. This term describes the response of your mind and body to safe circumstances or a secure environment, causing your heart and breath rate to slow, your blood pressure to drop, your energy usage to slow and your digestion and immune systems to turn on. In our above example, if you successfully avoided the car crash, once you got home and had some time to decompress, your system would slowly shift to the relaxation response. The relaxation response increases the activity of your parasympathetic nervous system, and enters you into the rest and digest state. 

You can trigger the relaxation response through conscious relaxation techniques or just by ordinary resting and relaxing while you are awake, such as by listening to calming music on your couch or by lying on a beach feeling the sun on your skin and listening to the waves. (This is in contrast to activities that are distracting rather than relaxing. For example, while TV distracts us from our real-life concerns, it is not actually relaxing your nervous system because the action you’re watching is typically very stimulating—as anyone who tries to go to bed after a scary movie or violent show soon realizes.)

Rest and Digest State. This term describes the state of your nervous system when your parasympathetic system is fully operational, you are mentally and physically relaxed, your body’s vital signs are in their calm state, and the immune, repair, and digestive systems are up and operating. You enter this state naturally when relaxing at home or out in nature, or when you use conscious relaxation to trigger the relaxation response.

Conscious Relaxation. This term describes any technique that triggers the relaxation response, including meditation, breath practices that are calming, guided relaxation practices, and even gentle and restorative yoga asana practiced mindfully. Keep in mind that this describes an active practice technique with a desired goal. But the awesome thing about conscious relaxation is that you can use it anytime and anywhere. You don’t need to fly to Hawaii. And although a quiet peaceful environment is helpful, you can even meditate or do breath practices in challenging environments. (See 6 Ways to Bust Stress with Yoga).

The Healthy Balance of Stress and Relaxation

So let’s say you’re sitting outside in the garden talking with a friend, and you’re feeling very comfortable and relaxed. Then your friend tells you about an interesting idea he has, and you suddenly perk up a bit. You then pitch in with an idea of your own, and that leads to very animated discussion. What’s happening here? Are you relaxed or stressed? Or, is it possible that you are both at the same?

Ding, ding, ding! Yes, it’s both at the same time. Your autonomic nervous system, which controls background processes that keep your body alive and healthy, such breathing, maintaining normal temperature, and adjusting blood pressure to match activity, is divided into two subsystems: your sympathetic nervous system and your parasympathetic nervous system. And these two subsystems work together in tandem, providing you with a healthy balance of activity and relaxation. 

Sympathetic Nervous System. This system stimulates you when you need to be active. The activity can be as basic as getting out of bed in the morning, writing an email, or practicing gentle yoga poses, something more challenging such as running a race or giving a public talk, or something really drastic such as trying to avoid a car accident. 

Your sympathetic nervous system prepares your body and mind for action by stimulating your heart to beat faster and stronger and slightly raising your blood pressure to improve blood flow, by opening your airways so you can breathe more easily, and by stimulating your thought processes so you can assess your situation and think more quickly.

In extreme situations—where serious action on your part is needed—your sympathetic nervous system triggers the fight or flight response, as described above. In this state, your sympathetic nervous system actually turns off the background functions of nourishment, restoration, and healing that are provided by the parasympathetic nervous system because these functions will slow you down. Being in the fight or flight state is normal and healthy as long as it doesn’t happen too frequently or continue for a long period of time, when it becomes chronic stress (see see About Stress: Acute Versus Chronic).

Parasympathetic Nervous System. This system is responsible for nourishing, restoring, and healing your body and mind. As you move through your day, whether you are totally relaxed, slightly active, or even very active, your parasympathetic nervous system stimulates digestion, activates various metabolic processes, and keeps your immune system turned on. (These functions will only be turned off temporarily when you’re in a fight or flight state.)

When you are physically still and your mind is quiet, your parasympathetic system functions optimally, allowing you to enter the rest and digest state. Being in the rest and digest state is normal and very desirable, as it gives your body and mind time to relax completely and recover from stressful periods. There’s probably no downside to spending a lot of time in this state, except you probably wouldn’t get very much done!

On an average good day, when you’re feeling rested and cheerful, and are involved in normal work and social activities, your sympathetic and parasympathetic systems work together to keep you in balance, allowing you to be both fully functional and stay healthy. A well-balanced yoga practice, including both physical exercise and stress management practices, will help you maintain this balance when there are minor challenges in your life. It is only when you spend too much time with an overactive sympathetic nervous system due to ongoing stressful life circumstances that you can become out of balance. At this point, it’s very important to take steps to reduce your chronic stress and bring yourself back into balance again, as chronic stress is harmful to your physical, emotional, and mental health (see About Stress: Acute Versus Chronic). And conscious relaxation with yoga is the way!

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