Answers to questions about exercise and EDS (Post 2 of 3 post series)

This is post 2 of a three post series on answers to questions about exercise and EDS; however, this post focuses on various types of mainstream workouts and exercises, versus physical therapy and standard questions. To read post 1 in this three post series, go here. To read post 3 in this three post series, go here.  
– Tai Chi, Yoga, Pilates & Barre are some of my favorite workouts for EDS. Tai Chi can help with balance and strength and is often a great start if you have not been active in quite some time. Yoga, Pilates & Barre can be good for core strength, overall strength & balance, as well as proprioception, but it is important not to stretch past mid-range. If you can find an instructor familiar with EDS, that is always best; however, anyone open to learning is great too. There are various videos on YouTube, ones online and ones available for purchase, which offer varieties all different levels of fitness. For example, there are restorative yoga, chair yoga, Pilates that can be done in bed lying down, floor barre and entry-level cycling classes. Some of the best workouts can be done at home (even from your phone) and have great tutorials. And since this is essentially what my account is about, I will be talking about each of these different workouts in more detail and ways to find the right type and modification suitable for you.
– Cardio Exercises such as swimming, cycling or other aqua-exercise are great and can be easier on joints, while still giving a great workout. However, I know many EDSers that run, do higher-impact exercises, walk miles daily, are triathletes, Paralympian and do all kinds of more intense activities. Many have had ups and downs like the rest of us, but they have done what they can to regain strength & find modifications if needed, to continue doing the activity that they love.

– Lifting Weights is a great weight to build muscle and strength. Many EDSers I know lift weights, and there are various ways to lift weights, different types of workouts and not all exercises that use weights, use extremely heavy weights or machines. Functional exercises (see above), barre workouts, boot camp style workouts and various others use lighter – medium weights, as well as your body as the primary “weight” lifted during strength exercises. A lot can be achieved using 3lb, 5lbs, 8lb and 10lb weights.. trust me. However, you do want to be careful to keep weights close to the body and not extend your limbs too far. Dr. Lavallee who just gave the webinar on “Exercise is Medicine for Ehlers-Danlos” is a weight-lifting coach and has EDS himself.
– Functional exercises are great for core strength, balance, and muscle tone. Many barre, yoga and Pilates workouts incorporate functional exercises and movements into their workouts. Functional movements also have many of the same principles as Natural Movement Training (see below). You can ask your PT, trainer or do a quick google search to find good examples of functional exercises or workouts.

– Natural Movement Training (NMT) focuses on the full range of natural human movement abilities. These include the locomotive skills of walking, running, jumping, balancing, crawling, climbing & swimming. Also, we practice the manipulative skills of lifting, carrying, throwing & catching. Basically, NMT focuses on going back to the basics of how humans used to move with all modern conveniences and the need to “workout.”
– Equipment is one of the biggest barriers people doing PT and exercises at home, but just remember, that a lot can be done with just a little music, maybe a workout video or following an appropriate level program from an app on your phone or online. Most often, the best PT programs aren’t solely based upon the equipment used, but on specific exercises to the individual. Just as you do not need the fanciest PT office to go to, with the most amazing equipment, you do not need to have everything at home in order to make significant gains both in office and on your own.

– Muscle soreness and how to determine if your aches and pains post-activity are from being sore in a good way, versus because you did something wrong and maybe even yourself.  Remember, so many factors go into muscles soreness and not all pain means injury. Muscles soreness is your body doing what it is supposed to do – repair and build new muscle fibers to make you stronger. However, I do recognize that for many of us, it’s hard to know how to tell if the pain we feel is from muscle soreness, or because an exercise was too much for our bodies at a certain moment in time. As you become more active, you will become accustomed to the difference and possibly even crave feeling muscle soreness – even just a little. I know I do.
On the other hand, there are times when I get so sore, that it hurts to walk. For me, this more intense soreness doesn’t mean that I’m injured, it means that I’ve lost quite a bit of muscle, or I’ve done something entirely new that my muscles are not used to. In college, if I stopped doing the FIRM videos or other strength training for one week, I would go through what I called, “the one month of leg pain,” before the soreness and aches were outweighed by the benefits of consistent strength training (and this was even before I knew I had EDS).
I’ve also learned that I’m most sore on day two post-workout. This is particularly the case if I did a harder workout, something new, hormones are involved, or my body had an adverse reaction to something (see mast cell reaction). Dehydration, nutrition, lack of sleep and other factors play a significant role in muscle soreness. Sometimes, extreme muscle soreness can also mean that my body is going through a more intense flare with chronic fatigue and fibromyalgia-like pain. When this happens, I get incredibly sore from workouts that my body is used to and despite being consistently active.
Because muscle soreness can be fairly scary to someone who’s trying to find the balance between being active again and not cause, even more, pain, it’s important to be aware of all of the different factors goes into how we feel post-workout and how sore our bodies may or may not get. It’s also critical to seek the advice of your physician or physical therapist before beginning any new activity or exercise program. Additionally, make sure to properly nourish your body before and after any activity. Light exercise and movement on the day after a new or intense workout/PT session, and even on day 2 when I usually am most sore, can help ease pain and assist in muscle recovery as well. See the Just 5 Minutes rule.
Last, it’s important just to keep moving. We all have days when we have the strength to move mountains (ok, maybe tiny molehills). We also have days where the thought of taking a shower or even walking to our bedroom to go to bed, is too exhausting. What’s important, is to judge how far you’ve come, versus how far you have still to go or where you used to be. When you live with a chronic condition(s), our journeys are like roller coasters – they go up, and they go down, even daily. What’s important is to judge how you are handling the ride, versus always wanting to jump off in the middle of going up the first big hill.
 

The difference between being sore and injury is varied in each of us. The more active you become, the less fearful of and can see the benefits of more activity – muscle repair, more strength and less pain. The most important thing is just to keep moving and find what works best for you. Many times, you have to take one baby step at a time and build strength as you get stronger little by little. A few examples of what taking baby steps look like – standing a bit longer each day, taking a few more steps each day, or working on how best to go from sitting to standing. I also recommend that people do what they can even in bed – i.e.,. sit up a bit more, do arm circles, bridges or other exercises that have been deemed safe for you by your physician or physical therapist.
Post one of Questions and Answers about exercise and EDS gave more details on how to determine muscle soreness from injury. When you are living with Ehlers-Danlos syndrome, you need your muscles to do the work that your tissues cannot. Hence, why it is important to keep our muscles as strong as possible to avoid The EDS Spiral. (“The EDS Spiral” is my saying vs. one used by the medical professionals).
Additional Information:
– Just 5 Minutes rule 
– Questions & Answers about exercise & EDS (Post 1 of 3 post series – answers to common questions about proper exercise & physical therapy)
– Questions & Answers about exercise & EDS (Post 3 of 3 post series – additional links & resources)
– Exercise/PT Tips & Video Clips (not all are uploaded just yet, so you may need to refer to Instagram or Tumblr for certain things – i.e.,. shoulder exercises)
– Moving Naturally with Hypermobility – seminars, resources, and information about moving more and moving better with hypermobility
– Exercise is Medicine for EDS – webinar by Dr. Lavalee sponsored by EDS Awareness
– Living Life to the fullest with Ehlers-Danlos Syndrome
– Our Stories of Strength – Living with Ehlers-Danlos Syndrome
– Restorative Exercise by Katy Bowman (similar to Natural Movement Training)
– Do Yoga with Me – online yoga videos for varying levels
– Power Yoga – Bryan Kest’ site (founder of power yoga)
– Barre 3 – Online barre workout videos
– Pilates by Lisa – Online pilates videos for varying levels
– Pilates Anytime – Online pilates videos for varying levels
– Natural Movement Training
 
 
Disclaimer: This information has been provided to help answer some common questions that often come up when discussing exercise and EDS. It is not a substitute for medical advice, and you have to make the best decision for your particular situation. Only you are responsible for you health and medical care. All information that I have provided, is based upon personal experience as someone who with lives EDS, has consistently worked out since I was an 11yo, my degree in public health/exercise science, my work in the medical field, my volunteer work with EDNF over the last 3 years, various presentations I’ve seen, and conversations I’ve had with many of those help care for us. Please read the full disclaimer here.