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I was very much my father’s child at fifteen years. My dad was a bit of a philosopher and instilled an innate curiosity. I remember roaming the aisles of Barnes and Noble for my next fix when I stumbled on Richard Hittleman’s Yoga, a 28 Day Exercise Plan. The book was jam-packed with black and white illustrations of a lithe and graceful seeming woman in odd poses. I decided I wanted to try it out, and went home that day to start my practice.

From the beginning, the poses were pretty easy for me because of my hypermobility and muscles that were still loose at this age. The breathing exercises were a welcome relief from anxiety I struggled with, and so it became something I did closed in my room several days a week burning some sandlewood incense. It was my own little sanctuary I mostly kept to myself, but my baton coach would comment on my increased grace only one summer after beginning. It was further reinforcement to this new thing that gave me respite.

The relaxation and relief I felt kept me coming back to the practice into my mid-twenties when I started to suddenly, it seemed at the time, have issues where I would lose balance or stretch past a now tightening muscle into the tendons and ligaments. I would sprain and sometimes things would pop and become inflamed. I became increasingly fatigued and struggled with chronic headaches and painful muscle spasms. Gradually, I stopped not knowing what was causing these issues.

Fast toward to today, and after almost eight years I have started yoga again in this last month. The decision was made after having been through the gamut with learning about what was going in with my joints. It was a combination of getting a more accurate diagnosis, so much physical therapy, and reading other people’s personal experiences with exercise. It’s a lot of trial and error too.

Why yin yoga?

The idea was that the slow, prolonged poses used in yin yoga would give me the opportunity to patiently monitor my body and pay extra attention to proper alignment. I didn’t want to be in a class and feel pressure to practice like I used too. I didn’t even want to give myself the temptation. So, I went with the passive stretching that uses the weight of your own body and gravity to stretch into the fascia. You do not push in yin… it’s more of a chill… I’m gonna fall asleep but feels so good, sorta thing.

A couple sessions in, I noticed that the ongoing tingling in my hands had let up a bit. Not to mention the relief from working on those chronically spazzed muscles. Within four or five classes I noticed I felt more comfortable in bed and was falling asleep more easily. Yoga is no panacea, but for me the benefits are enough so far to outweigh higher risk of injury.

The decision to do it regardless is a complicated one and made with the understanding that I’ll have to concurrently continue to maintain muscle as much as I can. I’ll have to have a knowledgeable teacher who knows which poses I need to modify, such as any that stretch the shoulders forward causing subluxation and pulling into the already weak ligaments there. Poses that focus on the SI and hips need to be modified as well for some people.

Any decision like this in chronic illness is ultimately going to be personal and individualized. Each of us is different in how EDS has effected our joints and muscles. Our necks can be especially troublesome, and dysautonomia can make it impossible at times to exercise the way we want. It’s a good idea to become familiar with how the body works to bypass areas of resistance, such as tight muscles and to understand the difference between hypermobility and flexibility the post I linked to last month describes.

I’ll give you a simple example of stretching through the muscle as I think of it. This is your knee “locking” if you’re not familiar…

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During head-to-knee forward bend, your knee is likely touching the floor. When I stretch like this, I feel pulling in my knees since the muscle is not aligned properly. The legs stay tight, and the stretch pulls at ligaments that certainly don’t need stretching. A solution is to prop the knees up with something. I’ve had trouble finding a good prop for this and tend to ball my fists beneath my knees.

There’s going to be a lot of opinions on whether a hypermobile person should stretch. I was told not to by my physical therapist with them saying how I already have good range of motion. And, I believe they hope the more I strengthen each muscle, the less my muscles will need to tighten to stabilize the joints. Because they’ll be stronger.

The issue is that I’m already significantly stronger than I’ve been in years with no noticeable improvement in muscle tightness. Most of us have a significant amount of adhesions, “scar tissue,” in the muscle as well. The tension is fatiguing in addition to the dysautonomia-caused fatigue. It’s something I can proactively try to address. So, I decided to go forward with yoga anyway despite the assertion that my range of motion is so good. I would disagree and say that my joint range-of-motion is so significantly greater that the stiff muscles are causing me to feel abnormally restricted. There might be a middle ground. Plus, hypermobility does not equate flexibility.

I want to emphasize that this decision is a personal one and not one to take lightly. It could be a mistake, but this is something I want to pursue. And, I’ll stress that I’m concurrently working and maintaining my core most days and would not pursue this without increasing stability first.

So, maybe I can gently work muscles without allowing them to completely relax causing the joints to slip around and further degrade. It’s something that I wouldn’t recommend doing without a yoga instructor well-informed on modifying for hypermobility, or better yet, a physical therapist that will do ongoing mobile therapy. Luckily, people are attracted to what they’re good at in general. And, there seems to be an increase in yoga articles addressing hypermobility and instructors dealing with it themselves.

So, what if you you have muscle weakness? In the first yin yoga class I did, we did a twisting motion on the ground. You lay on your back and tuck your knees. You let the knees fall to one side in the same direction while keeping the back on the floor and arms outstretched. You do this stretch passively in yin yoga meaning you hold it for a longer time and let gravity gently stretch you getting the benefit of taking stress off compressed nerves in my case from muscle spasm. (Massage would probably work too, but it’s so expensive and hurts your poor masseuse!)
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On the right twist, I was fine. On the left twist, about a minute in my legs started to fall substantially more. Within a few minutes I felt a strange wobble as I fought against my left hip seeming to ‘flop’ and cautiously started to hold my knees even though I felt no pain. Within the five minutes you lay there for, my knees had completely touched the ground, because I was too tired to hold them up from a weakened left glut I’ve developed from SI joint dysfunction. I flopped.

I didn’t feel the pain until I sat up. It was sharp and sudden, and it was difficult to lift my left leg. I had to grab ahold and place it back in front of me. My SI had slipped again is what I think happened. I laid down and did some self-adjustments and was okay, but it still had inflammation for a few days and had spasmed. During my first class, I had not told the instructor about my hypermobility. She ended up modifying this move to prevent this.

That weaker muscle made me think of the “stiffness dilemma,” because that weaker muscle is less stiff for me (It became smaller and inhibited from SI Joint Dysfunction).

When the muscle is smaller, there is more flexibility (but the same hypermobility) with a general floppiness. And that floppiness stresses already stressed ligaments when you stretch since there is no muscle to “catch the joint” from hyperextending for the ligaments. You are going to damage your joints.

And where you have muscle, (or sometimes with age it seems with hypermobility) you have spasm and adhesions. Your super-floppy days are over, and now you are just kinda floppy. However, you still have to pay attention and remember to actually engage the muscle during a stretch.  And, when you’re stiff but have more strength, when your knees are locked or elbows are backwards…

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I had a personal eureka moment where I finally understood what all that talk about “your muscles are doing the job of your ligaments” meant because of that weaker left side of my body. I understood the statement, but I didn’t understand how it applied. My inhibited muscle was much like the muscles I grew up with before they stiffened more. And, that flopping is how I am and remember being with that stiffness. It’s the same floppiness found in smaller joints still, like the ankles and fingers maybe because there is less muscle in these areas? I don’t know, but I’d add to that statement I’ve heard so many times that ligaments will try their best to do the job of your muscles in yoga, because it’s just easier like that. It’s such a balancing act.

Where we are less toned, we are vulnerable. And, even when we are toned, we have to be careful of our bodies not bypassing the too-stiff muscle to pull on a ligament further down to get us where we are urging it to go. And then, we have to have a smart and careful teacher who can watch for good body alignment and that you are engaging that muscle.

So, I’m going to keep at the yoga for now. I’m skipping poses that engage a weak muscle or where I don’t know the proper body alignment. And, I’m avoiding yin yoga poses where I do not feel the muscle stretching which maybe indicates I’m stretching ligaments. Also, my instructor and physical therapist seem to agree on holding back and always doing less than where we can ultimately go to in any position.

So, my final answer for myself to the question in last month’s post is to ‘kinda’ yogi.’ It seems really limited at first glance, but really I am empowered by knowing these limitations and will go further I hope.

When I was writing this post, I was looking around for others talking about yin yoga and hypermobility and happened upon a post I thought was well-written and helpful. She describes her experience here.

“Most people assume that a hypermobile person will present as extremely flexible – and we often do – but where hypermobility has been accompanied by inactivity and deconditioning, and widespread muscle spasm has gone unchallenged, the person may be very, very ‘tight’ – although they will still often have tell-tale hyperextending joints, sometimes with subluxations and / or dislocations. In this scenario, a modified yin practice could be very useful, probably with shorter than the usually recommended hold times (over-stretching will cause muscles to go into even tighter spasm, remember) and with very carefully targeted work. An experienced teacher can help the person to avoid flopping into familiar and already overstretched areas, and instead to access areas that may have gone offline, so that more functional, less painful movement patterns can be established.”

I think those are some helpful observations to explore in our own journey.

I remain perpetually hopeful. I do think that with eduction and intelligent thoughtful instructors there is a way to reap the benefits of yoga if your doctor thinks it is safe in your individual situation. And, stretching in general could be a powerful part of management in EDS when done properly.

EDS creates fragility, but we can adapt to it, and it is somewhat manageable. Lack of awareness puts an undue burden on patients, and when I think of how much I’ve learned in the last four years since being diagnosed, I know that I am more adaptable than I believed I could be. I know little, but I know enough to realize I can learn more.

Further reading…

Yoga International on JHS – Yoga’s Enigmatic Epidemic 

Reference Book, The Contraindication Index for Yoga Asanas. I’ve heard of this but did not download it and cannot attest to its helpfulness. However, it may be worth asking your instructor about.

Have more resources or suggestions to improve information in this post? Please add them in the comments section! 

 

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