Questions and answers about exercise and EDS (Post 1 of 3 post series)

Post previously published in March 2015.

One of the most common questions that I receive from people is about proper exercise & what type of physical therapy is best to do with Ehlers-Danlos syndrome. People want to know what exercises are safe and how to exercise when you are so fatigued and/or in pain.  There is no doubt that so many of us with EDS face daily issues battling chronic fatigue and chronic pain.  In fact, Chronic Fatigue Syndrome is considered one of the comorbidities associated with Ehlers-Danlos Syndrome and Pain in Ehlers-Danlos Syndrome Is Common, Severe, and Associated with Functional Impairment.” (J Pain Symptom Manage. 2010 Sep;40(3):370-8).

Additionally, the fear of movement and the fear of movement causing more pain is also very real; however, these fears can cause us to spiral further due to muscle atrophy and subsequent instability because we lack the muscles we need to stabilize our hypermobile joints.  This spiral is what I call “The EDS Spiral” and to read more, go here to read part 1 and here to read part 2. (“The EDS Spiral” is a phrase I use when describing what happens when someone with EDS has an insult or injury, thus resulting in feeling like everything has become unglued; however, the effects are propelled further due to lack of activity and fear of movement. It is not a medical term).
Questions and answers about exercise and EDS: 
What if I’m too tired? Just as above, gentle exercise can actually help with chronic fatigue and is the #1 way I personally deal with chronic fatigue as well.  However, there are times when Chronic Fatigue Syndrome is flared and just the thought of taking a showering or having to move to another room even to go to sleep, seems too much.  THIS is where The “Just 5 Minutes” rule is key for me every day, because there isn’t one day that goes by that I’m not to the bone tired at some point, if not most of the day.  There are also times when I can feel the fatigue in my muscles as soon as I start working out.  It’s an immediate feeling as if I’ve done the hardest, longest workout ever and I’ve only been working out for 2 mins.  That is my key to know to scale my workout back, manage my expectations and do what I can.  I never stop, but I find another way to move that is gentler, slower and will help heal my fatigued muscles, vs. causing additional inflammation.  Yoga is usually by go to for times like this or cycling.
What if everything hurts? May times, gentle exercise can help with pain and it is the #1 way I manage pain on a daily basis. I do know that others feel differently and the thought of moving or exercising while in pain is daunting.  One way to help is to try to focus on the part of the body that hurts the most or is causing the biggest issue and though it try to engage the whole body as much as possible (ie. functional movement and exercises).
– Try to not focus on if you will feel more pain or if PT and Exercise will make you worse, but instead on what you will gain from it.  It is hard to understand that until you’ve seen the strength gains, improvement in your life and do not feel so sore after PT or exercise; however, just remember .. anyone, EDS or not, who has not been regularly active will get sore from new activity. Even elite athletes get sore when they do something different from their normal activity.  How you can tell if something about an exercise or a PT program is not working for your body, is if pain increases during the exercise or if you are still sore several days afterwards (ie. really sore, like can’t walk, on day 3, 4 or 5 post-exercise).  Pain during a certain  exercise or the number of days post-exercise that you are still very sore is a good gage on the intensity level of a program and if it is suitable for your body at the time. If you determine that it is not, then the physical therapist should be able to modify you PT program or you can find ways to modify the workout that you are doing.
Focus on exercises that help improve balance and proprioception skills. Many of us feel unstable and like we might trip, fall or dislocate a lot of the time, some more than others, so improving our balance and proprioception is essential.  However, there’s a real fear-factor of getting hurt or falling, even when trying to improve ourselves. Distraction techniques are a great way to build skills, while taking the mind off the fear.  A few examples of a distraction techniques are: reading, playing a game or solving a problem while balancing on the balance board.  Any therapist should be able to help distract, as well as ensure that if distracted, you are being supported if balance is lost.  In addition, distraction allows for more fun, gets the whole-body working and thus, trains the body and mind to work together by performing exercises that we do in our daily lives.  Not to mention the more fun we have, that also means the more likely that you will do it again. Compliance with a PT program and motivation are key to our success in gaining strength. Ex. Functional exercises often focus on balance and proprioception.
– In general, most EDS Docs usually tell you to use caution against contact sports, high-impact activities and anything where you need to hyperextend the joints.  While EDS in and of itself does not “get worse,” there are factors that affect the integrity of our connective tissue, cause damage and thus, make you feel as if EDS is progressing in the opposite direction of what you want. Our challenge is to marry our need to remain active and keep strong, but also limit the damage.  It’s important to be smart about our activities, be aware of certain movements that cause harm and be aware of your personal care of EDS.  What may feel ok for one person, may not feel so great to the next? There are many elite athletes and even every day EDSers who do participate in contact sports and high-impact activities, but they have made that decision for themselves, based upon their awareness of their body.  And yes, many do great and some do not.  This is where other factors come into play, such as other conditions one may have, nutrition and quality of sleep.  I’m not sure anyone should engage in high-impact activities or contact sports, if they are chronically sleep-deprived, stressed and nutrition is poor.
What equipment will I need? Lack of proper equipment is one of the biggest barriers people doing PT and exercise 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 to make significant gains both in strength and stability on your own.
– Try to find a PT, trainer or therapist with EDS experience. Someone with real EDS experience will know to not push past their limits and will tailor each program to the individual.  If you cannot find someone with EDS/Hypermobility experience, then look for someone who is open to learning and who you can provide any of the EDS and PT presentations that are available on EDNF’s site too.  Again, we are all different. There’s not one way or program that works for all of us. 
My biggest tip for exercising with Ehlers-Danlos Syndrome: 
– The “Just 5 Minutes” Rule: the rule I made for myself years ago, as a way to “self-coach” when  I just do not want to workout, am too tired to do, am in too much pain to do and the list could go on.  But .. I learned long ago the benefits of exercise, especially for EDS and I know that the alternative is much worse, especially for me. The “Just 5 Minutes” Rule is this: Tell yourself that you only need to workout or move, even just a little bit for “just 5 minutes” and if after 5 minutes, you want to stop … you can stop.  I’ve never, not once stopped after 5 minutes. Not once. Ever. No, I’m not lying.
What’s the bottom line? You have the make the best decision for you, but do not allow the limitations of others limit what you do or do not do.  There is no “rule” for exercise and EDS. People may think there is because of something they heard from someone else or from their experience and that of a handful of others, but I have not seen or heard any recent information that has come out making a definitive blanket statement that everyone with EDS should follow concerning exercise and/or PT if you have EDS.  There are guidelines based on knowing what EDS is and how it can affect our bodies, but for every one person that can’t, there are three individuals who can.
While I cannot tell people how to find the motivation to exercise or do physical therapy, I can provide tips on how I find the strength to push through and offer a few recommendations on how to appropriately and safely exercise with EDS.  I do not believe that there is one right way to exercise or do physical therapy with EDS, nor to I feel as though there is a “do not” rule that applies to all of us either.
We all have different cases of EDS, along with various other issues (or not), face different challenges, motivations, and financial constraints. What is most important is to find what helps you build strength, keeps you motivated, and makes you feel good. It’s not rocket science or a magic pill, but so many have made great strides when they focus on what they can do, versus what they cannot.  Error on the side of caution with who and where you receive your information from and find what works for you, even if it seems a bit different from the norm.
Finally, in the words of Dr. Lavallee, “Just because you have EDS, doesn’t mean you can’t do amazing things with your body. You can do just about anything that you want to do; you just have to have the mind power.” A MUST listen for everyone with EDS!
To learn more on the some of the most up-to-date information on Exercise & PT with EDS, you click the link and listen to the webinar “Exercise is Medicine for Ehlers-Danlos” by Dr. Lavallee and sponsored by EDS Awareness.
This is the 1st post in a three post series on exercise and EDS.  To read post 2, go here. To read post 3, go here.
*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. All information that I have provided is based upon recommendations given through various presentations I’ve seen, and conversations I’ve had with many of those who help diagnose and treat us, as well as my volunteer work with EDNF for the last three years answering emails to the HelpLine. When pertinent, I also pull from personal experience as someone who with lives EDS, has consistently worked out since I was an 11yo, my degree in public health/exercise science and my job in the medical field. Integrity, experience and education are all important when dealing with health and medical issues, especially EDS. You are your best advocate. SFHEDS Disclaimer is here.

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