When you have a rare health condition, it's pretty exciting when you encounter someone who knows about it. Even more so when you encounter people who are interested in it and more importantly, understanding how to bridge the gap and work with it.
This is why I am really happy to be seeing more and more fitness professionals asking "I have a client with Ehlers Danlos Syndrome, what do I need to know?"
As a fitpro, and athlete living with Ehlers Danlos Syndrome I am always happy to chat to trainers looking to broaden their understanding, and as I am often answering the same questions, I thought it would be good to do a write up.
Quick disclaimer before we start - I'm not a medic, and this is not for medics. I'm going to provide you with as many references as I can, but please seek specific medical input from your/your client's health care professionals. And with that we get to our first point.
Quick, check your job title. Are you a personal trainer or coach? Good, because that's who I am aiming this at. More importantly I am assuming you are not a rheumatologist, or geneticist - so it is not your place to diagnose. You are not a physiotherapist, so it is not your place to treat or rehabilitate injuries. You aren't a dietitian, so you are not going to prescribe supplements or offer therapeutic meal plans.
If those things are needed [to the tune of badger mushroom] REFER REFER REFER REFER SCOOOOPE OF PRAAAACTICE.
You might be a corrective exercise specialist - this is brilliant, because you have the skillset to work at reducing postural issues and movement dysfunctions which are really common in people with EDS and contribute to a lot of their pain and injuries.
If you are a personal trainer you are able to help your client overcome barriers to exercise and train safely through a progressive programme. Good stuff.
So with that out of the way...
EDS is one of a number of genetic connective tissue disorders which are often referred to as Hypermobility disorders as the most obvious symptom is hypermobile joints.
So lets break this down - Genetic means that it is cause by a glitch in the DNA code that is essentially our body's recipe for collagen. It is usually inherited from our parents, but spontaneous mutations can also cause it. There are genetic tests for some, but not all types of EDS.
While we often talk about EDS in terms of the effects on the human movement system, it is important to be aware that collagen is and important structural component in all the body systems, and the effects of producing collagen that is effectively too elastic has a broad and diverse range of effects.
There are also several types of EDS, and some people, like me, have symptoms that cross types.
For more info check this out.
As a fitpro you don't need to know everything about EDS, so here's the run down on the stuff you should be aware of...
Actually I feel like this term is a misnomer from a fitness perspective (but not a medical one as I discussed in my yoga post). People with EDS have a larger than usual range of motion in their joints (not necessarily all their joints). But they are *flexible* not mobile, that is to say the range of strong controlled motion might even be less, but the passive range of motion can be dangerously unstable.
Hypermobility alone isn't an issue. A person who is hypermobile but has no other symptoms would be just fine. Much attention is paid to this, most obvious symptom, when in truth, flexibility is not a detrimental trait, but you know what is?
People with EDS don't have a good idea of where their body is in space. Most people have good feedback mechanisms that let them know when they are reaching the limit of their range of motion, so they often have highly dysfunctional movement patterns.
Look for hyperextended knees when standing, hyperextended elbows in plank, fingers flat to the floor in burpees when the palms are still off the floor, excessive wrist flexion when benching. Correcting these can simply be an issue of bringing awareness and training a new "normal" into the client's muscle memory.
Failing to correct these will lead to a greatly increased risk of injury - sprains and dislocations are very common in EDS, you can't afford to let poor form slide.
Due to a lack of strength in the ligaments, holding good posture can be an issue with EDS. Hyperlordosis due to lumbar weakness can throw out the lumbo pelvic hip complex putting the back and knees at risk.
Equally excessive pronation can lead to knee issues and affect the LPHC. Many EDSers have flat feet, or feet that move in and out of pronation. Watch the client in movement as well as at rest as some areas will "drop in and out" of their issues.
And you'll see all kinds of variations between individuals, our bodies are special and unpredictable.
Chronic fatigue is a common symptom in people with EDS. There's many reasons for this and it is worth addressing a few separately.
Sleep can be an issue because of pain or difficulty in getting comfortable. I personally have subluxed shoulders and hips from sleeping awkwardly. Several of the conditions which are linked with EDS, like fibromyalgia and anxiety also cause sleep issues.
Moving around with EDS is also just that bit more tiring, the effort it takes to move well while feeling out your movements with poor proprioception and the extra muscle effort it takes to stabilise the joints means that we are working that bit harder to achieve the same ends. Consider this in your programming, particularly in the early stages and understanding that endurance will be initially lower than expected.
Pain, which can be generalised and chronic, or specific to an injury, is simply draining. Living with chronic pain means filtering out a persistent "background noise" and it's just wearing. Many standard analgesics don't work on chronic pain, and one of the symptoms of EDS can be a reduced efficacy of certain drug types.
People with unstable joints injure easily. I have sprained ankles walking down the street, broken a foot by rolling my ankle getting off the sofa (I didn't notice until I heard the crack), dislocated kneecaps for no obvious reason and popped ribs by sneezing.
This along with chronic pain can make people with EDS reluctant to exercise. Which isn't helped when the advice many people give us on exercise is "don't" or "go careful".
Building up activity slowly focusing at first on alignment and just getting moving is a good start. I get people walking on the flat first. Aim for small victories and consistent progress.
Whatever happens be aware that a reluctance to move (which can even play out as a physical inability to do so) is a symptom of the condition, not necessarily a lack of motivation.
The autonomic nervous system regulates all our unconscious functions, everything from heart rate to digestive transit and hormone release. For some of us, it's wrong. It's just wrong.
PoTS is really common as is PoBS (the opposite, where your heart doesn't adjust to a change in posture or activity correctly). Blood pressure regulation is confused by our stretchy blood vessels.
What you need to know is that your EDS client may not react physiologically as you expect. Be aware of this in high intensity exercise and you may need to consider sequencing your workout so as to avoid getting up and down off the floor repeatedly for instance.
If you are a nutritionist (or perhaps if you aren't) you need to be aware that EDS also has a role to play in messing around with the guts. IBS is really common, as are general issues with digestive transit. Our guts are just too stretchy.
Sudden changes in diet, exposure to intolerances, a change in fibre content or water intake could all throw a spanner in the works. In essence I am advocating good coaching protocols, make changes small, achievable and slow, take feedback, adjust accordingly.
People with EDS often have vitamin D deficiency and it works out quite well that (in the UK) Vit D is the only one fitpros are supposed to recommend as a supplement within scope of practice, so go ahead and do that if you like.
A healthy balanced diet is always your go to. Gear towards recovery, that's super important. Some people talk about collagen supplementation, some people say that's daft because the client is making faulty collagen and feeding them good collagen will never change that. However, feeding to recover and build connective tissue strength is going to help them to produce the best result *for them*.
Costochondritis, inflammation around the sternum is an extremely painful condition that can be mistaken for a heart attack. All chest pain should be taken seriously and investigated.
Bruising and skin damage. Due to delicate capillaries and fragile skin, we are more susceptible to minor skin injuries. Also we can have super stretchy skin which is going to mess your skinfold tests right up.
Now here is a minefield... Let's mythbust....
Uh Uh. To say this is to assume that each person is universally and symmetrically flexible in all joints. Remember what I said about postural and movement dysfunction? It is very usual for certain muscles to tighten up as part of a complex misalignment. That hyperlordosis means short hip flexors. You can't correct it without releasing the tight areas. Injuries and compensations due to injury can also cause decreased mobility or imbalance.
Progressive stretching on already hyperflexible movements is not a good plan. Corrective stretching and mobility work are still valid.
Yeah, I wrote a whole thing on that.
High impact, repetitive movements can set you up for joint injuries. However there are many runners with EDS and if that is how they choose to be active, we can support them in that. Issues to focus on would include a good gait with midfoot landing, and a parallel programme of strength training to focus on stability in the ankle, knee and hip.
The issue with CrossFit here, or any sport that requires and athlete to perform high intensity, high impact movement under extreme fatigue, is that the risk of injury is high. Anyone pushing themselves like this will get sloppy with form and that's just a bit more likely if that person already has proprioception issues, fatigue and joint instability. Is it still possible for someone with EDS to enjoy CrossFit if they are appropriately fit? Absolutely. The question is one of readiness. Is it the best option? Probably not, but if that's what motivates them to keep fit, more power to them.
Weeeeeel, I do. And I'm not alone. Strength training has been the single most effective way for me to manage my joint instability. I get less injuries, less falls and less pain as a result.
With any kind of training/activity, the trick is to approach it intelligently, not to discount it from the outset.
So with all that in mind, let's summarise....
1. Listen to your client, properly. If they say they can't do something, believe them, and then find out why. Ask questions, look at the big picture. And help them through it.
2. Start slow, like super slow, don't push them and see what it takes to break them, better to start by instilling movement habits and good form.
3. Alignment and form always. Train good movement habits, correct dysfunction. Make sure that is all in place before attempting anything further.
4. Expect slow progress. Also unusual progress. I can build muscle fast, but developing the corresponding connective tissue strength takes much longer.
5. Expect rapid decline. Time off is a killer, be prepared to take some steps back after a break.
6. Think recovery. Think sleep, think stress management, think nutrition.
7. Don't be afraid to rest and deload, but avoid stopping completely.
8. Remember your client is an individual. Fitting into the EDS box for diagnosis doesn't mean that every EDS client will be the same.
9. Programme intelligently. Look for value in movements. Look at kinetic chains, co-ordination, balance. Consider managing fatigue. This is not the place for beasting or heroics.
10. If in doubt, refer out.
I have encountered many people with EDS who have complained that they cannot find a personal trainer who will work with them due to doubts about their health. Those people are often afraid to exercise without guidance and end up inactive and deteriorating. As a profession we can do better than that.
A trainer who is willing to listen and learn more about their clients is worth their weight in gold. Be one of those.
To find out more about working with me as your trainer, check out this link.
This is why I am really happy to be seeing more and more fitness professionals asking "I have a client with Ehlers Danlos Syndrome, what do I need to know?"
As a fitpro, and athlete living with Ehlers Danlos Syndrome I am always happy to chat to trainers looking to broaden their understanding, and as I am often answering the same questions, I thought it would be good to do a write up.
 |
| Bendy cat |
Quick disclaimer before we start - I'm not a medic, and this is not for medics. I'm going to provide you with as many references as I can, but please seek specific medical input from your/your client's health care professionals. And with that we get to our first point.
Scope of practice.
Quick, check your job title. Are you a personal trainer or coach? Good, because that's who I am aiming this at. More importantly I am assuming you are not a rheumatologist, or geneticist - so it is not your place to diagnose. You are not a physiotherapist, so it is not your place to treat or rehabilitate injuries. You aren't a dietitian, so you are not going to prescribe supplements or offer therapeutic meal plans.
If those things are needed [to the tune of badger mushroom] REFER REFER REFER REFER SCOOOOPE OF PRAAAACTICE.
You might be a corrective exercise specialist - this is brilliant, because you have the skillset to work at reducing postural issues and movement dysfunctions which are really common in people with EDS and contribute to a lot of their pain and injuries.
If you are a personal trainer you are able to help your client overcome barriers to exercise and train safely through a progressive programme. Good stuff.
So with that out of the way...
What even is Ehlers Danlos Syndrome?
EDS is one of a number of genetic connective tissue disorders which are often referred to as Hypermobility disorders as the most obvious symptom is hypermobile joints.
So lets break this down - Genetic means that it is cause by a glitch in the DNA code that is essentially our body's recipe for collagen. It is usually inherited from our parents, but spontaneous mutations can also cause it. There are genetic tests for some, but not all types of EDS.
While we often talk about EDS in terms of the effects on the human movement system, it is important to be aware that collagen is and important structural component in all the body systems, and the effects of producing collagen that is effectively too elastic has a broad and diverse range of effects.
There are also several types of EDS, and some people, like me, have symptoms that cross types.
For more info check this out.
How does this affect me as a trainer?
As a fitpro you don't need to know everything about EDS, so here's the run down on the stuff you should be aware of...
Hypermobility
Actually I feel like this term is a misnomer from a fitness perspective (but not a medical one as I discussed in my yoga post). People with EDS have a larger than usual range of motion in their joints (not necessarily all their joints). But they are *flexible* not mobile, that is to say the range of strong controlled motion might even be less, but the passive range of motion can be dangerously unstable.
Hypermobility alone isn't an issue. A person who is hypermobile but has no other symptoms would be just fine. Much attention is paid to this, most obvious symptom, when in truth, flexibility is not a detrimental trait, but you know what is?
Poor proprioception
People with EDS don't have a good idea of where their body is in space. Most people have good feedback mechanisms that let them know when they are reaching the limit of their range of motion, so they often have highly dysfunctional movement patterns.
Look for hyperextended knees when standing, hyperextended elbows in plank, fingers flat to the floor in burpees when the palms are still off the floor, excessive wrist flexion when benching. Correcting these can simply be an issue of bringing awareness and training a new "normal" into the client's muscle memory.
Failing to correct these will lead to a greatly increased risk of injury - sprains and dislocations are very common in EDS, you can't afford to let poor form slide.
Postural and movement dysfunctions
Due to a lack of strength in the ligaments, holding good posture can be an issue with EDS. Hyperlordosis due to lumbar weakness can throw out the lumbo pelvic hip complex putting the back and knees at risk.
Equally excessive pronation can lead to knee issues and affect the LPHC. Many EDSers have flat feet, or feet that move in and out of pronation. Watch the client in movement as well as at rest as some areas will "drop in and out" of their issues.
And you'll see all kinds of variations between individuals, our bodies are special and unpredictable.
Fatigue
Chronic fatigue is a common symptom in people with EDS. There's many reasons for this and it is worth addressing a few separately.
Sleep can be an issue because of pain or difficulty in getting comfortable. I personally have subluxed shoulders and hips from sleeping awkwardly. Several of the conditions which are linked with EDS, like fibromyalgia and anxiety also cause sleep issues.
Moving around with EDS is also just that bit more tiring, the effort it takes to move well while feeling out your movements with poor proprioception and the extra muscle effort it takes to stabilise the joints means that we are working that bit harder to achieve the same ends. Consider this in your programming, particularly in the early stages and understanding that endurance will be initially lower than expected.
Pain, which can be generalised and chronic, or specific to an injury, is simply draining. Living with chronic pain means filtering out a persistent "background noise" and it's just wearing. Many standard analgesics don't work on chronic pain, and one of the symptoms of EDS can be a reduced efficacy of certain drug types.
Kinesiophobia
People with unstable joints injure easily. I have sprained ankles walking down the street, broken a foot by rolling my ankle getting off the sofa (I didn't notice until I heard the crack), dislocated kneecaps for no obvious reason and popped ribs by sneezing.
This along with chronic pain can make people with EDS reluctant to exercise. Which isn't helped when the advice many people give us on exercise is "don't" or "go careful".
Building up activity slowly focusing at first on alignment and just getting moving is a good start. I get people walking on the flat first. Aim for small victories and consistent progress.
Whatever happens be aware that a reluctance to move (which can even play out as a physical inability to do so) is a symptom of the condition, not necessarily a lack of motivation.
Dysautonomia
The autonomic nervous system regulates all our unconscious functions, everything from heart rate to digestive transit and hormone release. For some of us, it's wrong. It's just wrong.
PoTS is really common as is PoBS (the opposite, where your heart doesn't adjust to a change in posture or activity correctly). Blood pressure regulation is confused by our stretchy blood vessels.
What you need to know is that your EDS client may not react physiologically as you expect. Be aware of this in high intensity exercise and you may need to consider sequencing your workout so as to avoid getting up and down off the floor repeatedly for instance.
Digestive issues and nutrition
If you are a nutritionist (or perhaps if you aren't) you need to be aware that EDS also has a role to play in messing around with the guts. IBS is really common, as are general issues with digestive transit. Our guts are just too stretchy.
Sudden changes in diet, exposure to intolerances, a change in fibre content or water intake could all throw a spanner in the works. In essence I am advocating good coaching protocols, make changes small, achievable and slow, take feedback, adjust accordingly.
People with EDS often have vitamin D deficiency and it works out quite well that (in the UK) Vit D is the only one fitpros are supposed to recommend as a supplement within scope of practice, so go ahead and do that if you like.
A healthy balanced diet is always your go to. Gear towards recovery, that's super important. Some people talk about collagen supplementation, some people say that's daft because the client is making faulty collagen and feeding them good collagen will never change that. However, feeding to recover and build connective tissue strength is going to help them to produce the best result *for them*.
Other issues to note
Costochondritis, inflammation around the sternum is an extremely painful condition that can be mistaken for a heart attack. All chest pain should be taken seriously and investigated.
Bruising and skin damage. Due to delicate capillaries and fragile skin, we are more susceptible to minor skin injuries. Also we can have super stretchy skin which is going to mess your skinfold tests right up.
What can and can't an EDS athlete do?
Now here is a minefield... Let's mythbust....
Hypermobile people shouldn't stretch
Uh Uh. To say this is to assume that each person is universally and symmetrically flexible in all joints. Remember what I said about postural and movement dysfunction? It is very usual for certain muscles to tighten up as part of a complex misalignment. That hyperlordosis means short hip flexors. You can't correct it without releasing the tight areas. Injuries and compensations due to injury can also cause decreased mobility or imbalance.
Progressive stretching on already hyperflexible movements is not a good plan. Corrective stretching and mobility work are still valid.
Hypermobile people shouldn't do yoga
Yeah, I wrote a whole thing on that.
Hypermobile people shouldn't run.
High impact, repetitive movements can set you up for joint injuries. However there are many runners with EDS and if that is how they choose to be active, we can support them in that. Issues to focus on would include a good gait with midfoot landing, and a parallel programme of strength training to focus on stability in the ankle, knee and hip.
Hypermobile people can't to CrossFit
The issue with CrossFit here, or any sport that requires and athlete to perform high intensity, high impact movement under extreme fatigue, is that the risk of injury is high. Anyone pushing themselves like this will get sloppy with form and that's just a bit more likely if that person already has proprioception issues, fatigue and joint instability. Is it still possible for someone with EDS to enjoy CrossFit if they are appropriately fit? Absolutely. The question is one of readiness. Is it the best option? Probably not, but if that's what motivates them to keep fit, more power to them.
Hypermobile people shouldn't lift heavy.
Weeeeeel, I do. And I'm not alone. Strength training has been the single most effective way for me to manage my joint instability. I get less injuries, less falls and less pain as a result.
With any kind of training/activity, the trick is to approach it intelligently, not to discount it from the outset.
Top Tips for Training bendy zebras
So with all that in mind, let's summarise....
1. Listen to your client, properly. If they say they can't do something, believe them, and then find out why. Ask questions, look at the big picture. And help them through it.
2. Start slow, like super slow, don't push them and see what it takes to break them, better to start by instilling movement habits and good form.
3. Alignment and form always. Train good movement habits, correct dysfunction. Make sure that is all in place before attempting anything further.
4. Expect slow progress. Also unusual progress. I can build muscle fast, but developing the corresponding connective tissue strength takes much longer.
5. Expect rapid decline. Time off is a killer, be prepared to take some steps back after a break.
6. Think recovery. Think sleep, think stress management, think nutrition.
7. Don't be afraid to rest and deload, but avoid stopping completely.
8. Remember your client is an individual. Fitting into the EDS box for diagnosis doesn't mean that every EDS client will be the same.
9. Programme intelligently. Look for value in movements. Look at kinetic chains, co-ordination, balance. Consider managing fatigue. This is not the place for beasting or heroics.
10. If in doubt, refer out.
In conclusion
I have encountered many people with EDS who have complained that they cannot find a personal trainer who will work with them due to doubts about their health. Those people are often afraid to exercise without guidance and end up inactive and deteriorating. As a profession we can do better than that.
A trainer who is willing to listen and learn more about their clients is worth their weight in gold. Be one of those.
To find out more about working with me as your trainer, check out this link.
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