Written by Ben Sonnenburg
In the average population, it has been well documented that resistance training can increase muscle mass and improve functionality of the muscle.
Ehlers Danlos Syndrome (EDS) is a genetically derived disorder that has globalized hypermobility (ability for a joint to go past a normal range of motion), skin extensibility and tissue fragility.
Tissue fragility, in some cases, even extends not only to the skin most exterior on a person, but also may be impacting interior organs as well. Due to these conditions, there is a lot of joint instability throughout the body both from a lack of connective tissues holding joints in place and joint hypermobility.
This leads to severe pain and overall impairments of normal daily activities.
Therefore, in order to improve symptoms of EDS, researchers sought to determine what impact strength training had on muscle strength and tendon stiffness.
Nine subjects were chosen for the study, but three dropped out before it began, and three more after 1-2 training sessions due to the time commitment and lack of transportation. Nevertheless, three participants (all over 18) completed the training program and each one had genetically verified cEDS.
The participants were put on a strength training program that gradually got more challenging as their body would allow. They met three days a week with at least one rest day in between each session to ensure proper recovery. The training lasted four months to also ensure the adaptations were not only neurological.
In the strength training program, there were two parts done in each session following a five-minute warm up on a stationary bike. First a focus on the lower body, then upper body exercises. Both were done in seated positions using bodyweight or machines. The exercises chosen were leg extension, leg curl, leg press, resisted calf raises, chest press, seated rows, abdominal crunch, and lower back extension.
All the exercises were done for three sets of ten repetitions. The individuals determined their own intensity and weight, but if they were able to complete additional repetitions past ten on any given exercise, their weight would be increased.
In addition to the four months of testing, there was first a familiarization period of twelve sessions administering correct technique in order to reduce the risk of harmful events. Though during the four-month testing they were able to determine their own weight, during the familiarization period after learning correct form, they had to do a five-rep max (maximum amount one can lift for five repetitions) and used that data to determine their one-rep max. From their one rep max, the researchers calculated what their ten-rep max would be, and used that as a starting point.
This was important to the researcher because trying for a one-rep max has the chance of inducing a harmful event. Other base tests before training were also recorded. These were isometric muscle strength, chair stand test, body composition, dynamic training strength, tendon mechanical properties, balance, and fatigue.
The study demonstrated that power increased in the knee in every individual while simultaneously promoting stiffness of the patellar tendon (knee tendon) by an additional 724N/mm. Isometric force increased by an average of 39N, and each person also lost an average of 2.1kg (4.6lbs) of body weight. Total body fat percentage did not change.
Overall fatigue also decreased in every individual that participated in the study.
Continually, each participant noted physical changes compared to before starting the exercises.
It was noted that there is less back pain, increased mobility, little longer walking before use of crutches, more strength, and more energy.
All the strength tests also demonstrated improvements across all given exercises.
Furthermore, functional strength and balance improved in each of the participants.
The researchers demonstrated that all three of the participants were able to perform the strength training program with minor musculoskeletal pain. Each of them had marked improvements and what was most interesting, was the tendons’ ability to become more stiff instead of remaining too weak. Therefore, the body was able to adapt to the demands placed on it and in a way make up for the genetic error.
Fatigue was also a major factor change following the course of the study and is a major problem for people with EDS. Nevertheless, upon completion two of the participants moved from a severe fatigue into a normal range. The third participant was already within a lower range, but there were still major improvements.
The researchers attribute this change due to the muscles growing stronger due to fatigue being correlated with muscle weakness.
The stronger someone with EDS becomes, the less fatigue they will have to endure.
This can be applied for every person that has EDS, but the researchers state that it must be individualized per participant targeting weak and painful areas. Once those become stronger, the body will experience less pain and, simultaneously, less fatigue.
In every single one of the participants, strength training played a major role in changing their lives.
Not one of them walked away without heavily being impacted and it was even on exercises that mainly just promote strength.
It is my passion to work with people who have EDS and hypermobility and guide them through the struggles of joint instability, fatigue, pain, and frustration over an inability to perform daily activities depending on the given day.
I hope to see more research done on targeted strength training for specific joint instability in EDS in order to determine how much targeted training would impact someone compared to general strength training exercises.
As someone who has clinically verified EDS, I have seen the major benefit of targeted strength training in reduction of pain and fatigue.
I have been given the capability to live a much more normal life and hardly have any pain.
Though it is difficult to manage each day, it is my goal to help others with EDS do the same and teach them how to BE FIT.
Reference:
Møller, M. B., Kjær, M., Lovind Andersen, R., Magnusson, S. P., & Nielsen, R. B. (2019). Functional adaptation of tendon and skeletal muscle to resistance training in three patients with genetically verified classic Ehlers Danlos syndrome. Muscle Ligaments and Tendons Journal, 04(03), 315. doi.org/10.32098/mltj.03.2014.09.