Stress

How EDS and Chronic Pain Promote Fatigue and What to Do About It (Part 1)

Body Literacy, Chronic Illness, Chronic Pain, Ehlers-Danlos Syndrome, Stress / June 15, 2020 / 10 minutes of reading

Do you feel rested in the morning? Or do you want to roll over and go back to sleep? Maybe you’re thinking, “I’m a great sleeper! I can sleep for 15 hours straight!”

Neither of these are signs of someone who gets restorative sleep and both can be signs of fatigue.

Fatigue is a common symptom of many chronic conditions. Today we focus on fatigue in people living with Ehlers-Danlos Syndrome (EDS), and what anyone whether they have EDS or not can do about it.

The Ehlers-Danlos Society describes the Ehlers-Danlos Syndromes as:

A group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

Ehlers-Danlos Syndrome (EDS) is considered a rare disorder. There are 13 different types of Ehlers-Danlos syndromes. The latest statistics list the total prevalence of all the types as 1 in 2,500 to 1 in 5,000 people. Clinical experience suggests EDS may be more common than that.

In fact, I have hypermobile Ehlers-Danlos Syndrome! Many of us living with EDS will call ourselves “zebras.”

Why the Zebra?

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.

But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.

So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.

-The Ehlers-Danlos Society

Okay, let’s get back to sleep!

There are many reasons why a Zebra might have chronic fatigue:

Autonomic Nervous System Dysfunction
Metabolic factors
Inadequate rest (not taking breaks/feeling guilty about it #permissiontorest)
Cognitive tasks (which are just as tiring as physical tasks!)
Emotional stresses (draining)
Everyday life (which sucks up your energy)

It’s important to keep in mind there is no one thing that will work for everyone. Every person’s body is different. You are the expert in what it’s like to live in your body, and no one else.

EDSers tend to have non-restorative sleep. The most common pattern of sleep disorders in EDS is not enough time in deep sleep (my Oura ring can vouch for this!). The continuity of deep sleep is broken by arousals which cause us to wake up feeling tired.

Did you know you have to be awake for 2 minutes to remember being awake? An awakening is defined as disruption to continuity of sleep that lasts more than 30 seconds. And less than 30 seconds is called an arousal.

Dr. Alan Pocinki in his presentation on chronic fatigue at the Ehlers-Danlos Society’s 2019 Nashville Global Learning Conference shared that in one sleep study of a woman with EDS, she had no deep sleep or REM, and was not cycling through the stages of sleep. The sleep study showed her continuity of sleep had been broken 150 times in seven hours!

I’m exhausted just typing that.

So what can we do about disordered sleeping?

From the perspective of someone living with a chronic condition with a pain characteristic, there are two areas that can be focused on:

Practice good sleep hygiene
Manage pain

There are many lifestyle interventions that promote sleep hygiene (behaviors that contribute to good quality sleep as well as alertness during the day). Let’s explore five of them today.

1. Control your exposure to light

Light is one of the primary drivers of our circadian rhythm and the sleep/wake cycle.

Avoid blue light in the evenings and hours leading up to bedtime.
Avoid or minimize use of electronic screens two to three hours before bedtime.
If you must use screens install a program like f.lux on your computer, or wear orange-tinted, blue-light blocking glasses at night.
Use blackout shades or an eye mask to keep your bedroom as dark as possible.
Cover or remove anything that emits light in your bedroom like digital alarm clocks. We put black electrical tape on the green digital lights of our window AC unit during the summer months.

Blue light is not all bad. What matters is getting it at the right time of day. In addition to your sleep hygiene in the evening, you’ll want to make sure you get sunlight during the day.

Take a short walk when you wake up
Eat breakfast outside
Use a light machine (I do this during the long, dark days of winter!)

2. It’s time to move it, move it!

But you don’t need to even do it that much. As little as 10 minutes of aerobic exercise can dramatically improve your sleep quality. Physical activity also improves sleep duration.

However, the timing of exercise can make or break your sleep. According to the National Sleep Foundation:

Early morning and afternoon exercise may also help reset the sleep wake cycle by raising body temperature slightly, then allowing it to drop and trigger sleepiness a few hours later. It can be especially helpful if you are able to exercise outdoors and let your body absorb natural sunlight during the daylight hours.”

This explains the sleep-like-a-baby feeling I get in the evenings after an afternoon bike ride!

It’s important to note that strenuous exercising too close to bedtime can actually be detrimental to your sleep quality. This does differ from person to person, so as always, you know your body best – find out what works best for you.

While we’re all familiar with the common refrain to “get more exercise,” exercise is not the only kind of movement that counts. Non-Exercise Activity Thermogenesis is all the movement we do throughout the day that isn’t sleeping, eating, or sports-like. Walking to the store, taking the stairs, doing house or yard work all increase NEAT.

Start observing how sedentary you are during the day and where you might be able to get more NEAT in.

Are you able to take that phone call while on a walk? How about standing at your desk for a bit?

3. Nutrition and Sleep

In general it’s best to not go to bed too full or hungry. And since no two people (or Zebras) are alike, it’s important to pay attention to your body.

Are you someone who needs a snack before bed because you tend to have low blood sugar? Waking up in the middle of the night can sometimes be an indication of this!

Or are you the type of person who does better with a smaller dinner? Is your body getting enough nutrition to help you sleep at night? Low-carb and low-fat diets could also impact your sleep.

Did you know as many as 20% of Americans use alcohol to help them fall asleep?

While it may help you fall asleep more quickly, it leads to poor quality sleep by disrupting your circadian rhythm and blocking REM sleep, your body’s most restorative sleep.

By now we all know about the effects of caffeine on sleep. If you have a caffeine habit that needs breaking it’s best to wean off rather than quit abruptly.

4. Manage Stress

In today’s day and age, feeling stressed seems like the default.

With a global pandemic, civil unrest, rampant racism, and record rates of unemployment, it’s hard for it not to be!

When every night brings another day’s news cycle depicting the pain, trauma, and devastation occurring around the world to a close, calming our nervous systems can feel like a Herculean feat.

Add to this our propensity to use our smartphones to get those additional hits of the news right before bed and it’s a double whammy of blue-light exposure and stress activation!

Explore different types of stress management techniques and tools like deep breathing, meditation, yoga, prayer, knitting, and more to help you manage stress.

5. Create and Maintain a Relaxing Sleep Space

Don’t sleep with your kids or pets.

While sleeping with kids or pets might work for some, if you are waking up tired in the morning, you might consider not sleeping with them to see if that helps.

If possible only use your bedroom for sleep and sex.

The intention is for your bedroom to be a relaxing place. If you’re also folding laundry, working on your computer, and eating in your bedroom it can create unnecessary stressors.

Is there a lot of noise outside your bedroom?

Use earplugs, or a noise machine to block it out.

Avoid using electronics in the bedroom.

Study after study shows digital tech activates our sympathetic nervous system making it harder for our bodies to shift into sleep.

I know, “But my phone is my alarm clock!” In some cases, analog is a better choice than digital – this is one of those cases.

The lights from a digital alarm clock (or your phone) are actually bright enough to disrupt your circadian rhythm!

Control the temperature of the room.

Sleeping in a slightly cooler room tends to work best for most.

Many EDSers also deal with dysautonomia, the dysfunctioning of our autonomic nervous systems (ANS). One of the responsibilities of the ANS is to regulate body temperature.

Many EDSers report non-hormonal hot flashes during sleep. Dr. Pocinki in 2019 at the EDS Global Learning Conference shared that these hot flashes are often autonomic in nature. Hormonal hot flashes tend to be in the upper body, chest, and face. Whereas, waking up hot all over usually signifies they are due autonomic dysfunction.

A person with EDS’s body temperatures often bottoms out in the middle of the night, and so it overcorrects. We warm up too much and wake up in a hot sweat with our hearts racing.

The heart racing could be a nightmare or dream, or it could be adrenaline. The ANS is also what tells the body to release adrenaline.

The Autonomic Nervous System is what keeps us on an even keel. When it malfunctions, things start to fluctuate. Our sympathetic ( fight or flight) VS parasympathetic (rest and digest) responses go out of whack.

When the sympathetic nervous system is activated it causes us to release adrenaline more often. We might overreact to minor stresses in our lives and waste energy that we could be conserving leading to more fatigue.

How comfortable is your bed?

This might be obvious, but if your bed is uncomfortable, your sleep is not going to be great.

As a hypermobile person, a mattress’s quality and comfort are even more vital. If you haven’t caught on to the theme yet, you know your body best.

Some considerations for the Zebra:

A mattress that is too soft could misalign your spine, cause sore muscles, or subluxation/dislocations in your joints
Too firm and it could cause bruising and pain

Some people find a softer bed more comfortable, others like a firm mattress, still some folks are in between. Get your Goldilocks on and find yourself a mattress that feels just right.

To sum up

Getting the right kind of light at the right time, moving more, optimizing our nutrition for sleep, managing our stress, and maintaining a relaxing sleep environment all contribute to better quality and duration of sleep.

When living with a chronic illness like the Ehlers-Danlos Syndromes it’s easy to run out of spoons before midday. The little things add up! And so do the little things you can do to improve your sleep and manage or reduce fatigue. Do you have to cover all five of the areas on this list? No.

I know how overwhelming it is to live with chronic illness.

What feels like low-hanging fruit? One baby step that feels doable to you now?

Start there.

Have you made improvements to your fatigue by working on your sleep hygiene? What worked for you?

Tell me about it in the comments below!

Stay tuned for Part 2, where I go over how chronic pain promotes fatigue and what you can do about it.

Smartphones, Stress, and Sex – Tech Addiction Could Be Hurting Your Sex Life!

Body Literacy, Stress / March 20, 2020 / 8 minutes of reading

Is your smartphone the first thing you look at in the morning and the last thing you touch before falling asleep? Are you the 1 in 10 Americans who even look at their phone during sex?!

(Researchers think this number is likely higher, but who wants to admit to it?)

Half of Americans agree that they cannot imagine life without their smartphone. A child born in 2013 will spend a full year of its life in front of a screen by the time they are 7 years old. 75% of people aged 25-34 check their phone during the night. Americans aged 18 to 34 check their phone between 47 and 82 times per day on average.

It might be common, but this is not normal.

Tech companies and the behavioral psychologists they hire engineer their technologies to manipulate our brains in a way our human species is especially vulnerable to.

Not only are they purposefully hacking the way our minds work to keep us on our phones longer, they know it’s not healthy. Many tech titans don’t allow or limit their kids’ use of smartphones and other devices. Bill Gates wouldn’t allow his kids to have phones until they were 14. Steve Jobs did not allow his children to use iPads or iPhones at the dinner table. The editor-in-chief of Wired would not allow their kids to use technology during the week and no devices were allowed in the bedroom. It’s not uncommon for parents in Silicon Valley to send their kids to Waldorf Schools where they are required to sign a contract to limit their children’s screen time at home. The very people who profit from these technologies follow the cardinal rule of drug dealers, “Don’t get high on your own supply.”

Smartphone addiction affects people of all backgrounds and ages. You can take the Smartphone Compulsion Test on my website to see how you score when it comes to your relationship with your smartphone.

Humans and our brains evolved to seek out information and be distracted.

This is how we kept ourselves safe in the earlier years of our evolution. In the natural environment, as hunter-gatherers we would scan the horizon seeking new information to protect ourselves from predators. This may have helped us survive back then, but in the modern world this drive to check for new posts and stories causes serious harm, physically, mentally, emotionally, and socially.

According to a 2018 survey of 1,000 people, one in ten Americans admits to checking their phone during sex.

Among those who do admit to it, 43% admitted to doing it between 2 and 10 times in the prior year. For many it’s not just a one time thing, it’s a repeat offense. You might be wondering, “Why would anyone prefer to be on their phone rather than have sex?!”

The truth is smartphones are specifically designed to take advantage of our brains.

Technology addiction is not a personal failing.

Similar to Pavlov’s dog, every time we hear a ding or receive a notification for a new text, email, or like on a post our brains release the highly rewarding neurotransmitter dopamine.

Our brains have learned that checking our phone equals a reward. The reward is a release of dopamine. Dopamine makes us feel pleasure. Our brains even release dopamine in anticipation of a reward, some research suggests up to twice as much dopamine as actually receiving the reward. This means just the sound of an incoming text from your phone releases more dopamine in your brain than actually reading the text itself. Dopamine trains us to associate certain behaviors with these pleasure receptors in the brain. But, pleasure and excitement are not the same as happiness. We may be more digitally connected to our peers than ever before, but we are not happier.

Dopamine is also released during other pleasurable activities like eating highly rewarding foods and having sex. But, when our phones go off during sex, the anticipation of what’s on the other side of that notification opens the dopamine floodgates and…well, at least 1 in 10 of us will check our phones.

In Manoush Zomorodi’s book Bored and Brilliant he shares that Golden Krishna, an expert in user experience at Google points out, “that the only people who refer to their customers as ‘users’ are drug dealers – and technologists.”

The more we check our phones, the more this dopamine cycle gets reinforced and the more it creates an addictive relationship.

Designers have a deep bag of tricks to employ to increase the time we spend on our devices, and manipulate our brains to trigger addictive behavior. They are specifically engineered to suck us in and dominate our attention.

Instagram created an algorithm that holds back new likes to users and delivers them in a burst at the most effective moment possible to discourage you from closing their app.

Facebook was monitoring teenagers posts in real time gauging when they felt depressed and actually bragged about showing them ads when they could detect those teens needed a confidence boost. While you might look at that and say “ah, but isn’t that benevolent?” – the tech company is deliberately hacking our brains. Some software engineers in Silicon Valley make some adjustments and around the world people change their behaviors in a way they think is natural but it is really by design.

In her book, How to Break Up with Your Phone journalist and author Catherine Price presents slot machines as a perfect analogy for how our smartphones create an addiction. Slot machines are widely recognized as one of the most addictive devices on the planet because of intermittent reinforcement. Just like how we don’t always win when we pull the arm down on the slot machines, we don’t always get the reward we are looking for when we check our phones. Our behavior is only rewarded some of the time. This intermittent reinforcement is what gets us hooked. Will we or won’t we get another like, email, or text? It’s our very own pocket-sized slot machine.

We experience what we are paying attention to.

We experience and remember what we pay attention to, our lives are made up of what we are paying attention to. If we’re spending 8 hours a day on our phone or in front of a screen, this is all we experience and remember. No wonder so many people feel discontent and unhappy. All the dopamine in the world can’t fix that.

Smartphones are engineered to draw us in, keep us on them, and hijack our attention. Our attention is one of the most valuable resources we have. Our attention determines what makes up our life experience. Tech companies call us their users, but their real clients are the advertisers they sell ad space (and by default our attention) to. You are the product for these tech companies, not the consumer. Your attention and how long you spend on these apps and websites and devices determines how much these tech companies can sell their ad space for. It’s an attention economy, and they’re making money off of your most precious resource, your attention, the very thing that determines what your experience of life is like. And it’s just a small group of mostly white men in Silicon Valley designing these apps and products that consume our attention and change our behaviors all over the world.

What do you want to be experiencing in your life?

Every moment you spend scrolling the infinite feed is money made for mega corporations instead of experiencing the life you desire. When most of my clients describe what they want to be experiencing they say everything from peace and joy to feeling alive, in the moment, and enjoying a playful, sexy relationship with their partner.

So, what are you paying attention to? Are you scrolling through the endless feed on your phone? Can’t take your eyes off the news headlines?

Not only does being distracted by our smartphones take us out of the present moment, but research also shows us that smartphone use increases our cortisol levels and keeps us in fight or flight mode engaging our sympathetic nervous system. Your cortisol levels increase even when your phone is in sight or you are just thinking about it!

As sexuality teacher, registered nurse, and midwife Sheri Winston says in her book Women’s Anatomy of Desire, “Great sex can only happen when you’re fully there. Erotic pleasure is one of life’s great gifts, but you have to be present to get the present.”

And yet 80% of women report “not getting the present” during penetrative sex!

Now let me be clear, it is perfectly normal (and highly encouraged) to orgasm in other ways during sex that do not include penetration. And I hope the majority of folks who are not orgasming from penetration are finding other ways to reach climax during sex!

The thing about sex is while orgasm and ejaculation might be caused by the sympathetic nervous system response, arousal and erection are functions of the parasympathetic nervous system. Put simply, we must be in rest and digest mode (some call it ‘feed and breed’) to become aroused enough to reach orgasm. Unfortunately, our smartphones keep us in a state of fight or flight.

Is it time you break up with your phone? Join my 30-Day Phone Breakup Coaching Program!

Your sex life will thank you for it!