Living With Ehlers-Danlos Syndrome

This week we are fortunate to learn about living with hypermobile Ehlers-Danlos Syndrome, Craniocervical Instability and Adrenal Fatigue from the incredibly inspirational Jess Roe.

All those years I’d been told to avoid physical activity, when it was actually the key to managing my pain!

– Jess Roe
This week we are fortunate to learn about living with Ehlers-Danlos Syndrome
This week we are fortunate to learn about living with Ehlers-Danlos Syndrome

My diagnosis: Ehlers-Danlos Syndrome, Craniocervical Instability and Adrenal Fatigue

I have always known something was wrong with me but for most of my life I never sought answers because my experiences talking about my symptoms with doctors left me thinking it was all in my head. 

What were your symptoms?

Hypermobile Ehlers-Danlos Syndrome is a genetic condition where the body does not produce collagen properly. Collagen in a major building block for all the body’s connective tissues, so you really need it to be strong and sturdy to support the body. For people with EDS, that collagen is not as strong and it’s extra stretchy.

There are different varieties of EDS depending on which body system is most affected. For me, it’s my gut and musculoskeletal system which is what makes me so flexible.

That flexibility leads to all my chronic pain, because if you’re too flexible and don’t have the muscular strength to hold your skeleton together, your joints get strained, and your muscles get tight in an attempt to make them work better. But it just leads to a lot of pain. EDS is also linked to an increase risk of anxiety, depression and chronic fatigue, so that diagnosis really explained everything I had been dealing with my entire life. 

This week we are fortunate to learn about living with Ehlers-Danlos Syndrome
This week we are fortunate to learn about living with Ehlers-Danlos Syndrome

How did you know it was something serious?

I started having stomach issues before I can even remember. My parents told me about taking me to the emergency room several times as a toddler because of excruciating stomach pain, the cause of which the doctors could never identify. 

As a child, I had debilitating knee pain that made it impossible for me to run and play with other kids. But I was told it was growing pains so I thought it was normal and would pass. Doctors did recommend avoiding physical activity since that seemed to make it worse. An orthopedic doctor later told me it was chondromalacia, or roughening of the cartilage around my knees. He wanted to remove my kneecaps, smooth the cartilage and put my kneecaps back on straight to treat it. Now I know that this is a common misdiagnosis for children with hypermobile EDS. 

As a teenager, I developed extremely painful periods along with horrible weekly migraines and chronic fatigue and brain fog. The entire time, I thought this was normal. Doctors led me to believe that I was hypersensitive and needed to toughen up. 

So I tried to get tough. I pushed through all my symptoms. I learned not to talk about them and just take some advil and avoid complaining. I hated my body for being so difficult and gross. I did my best to disconnect from my body and tried to ignore my symptoms as much as I could. But, of course, they were always there. 

When did “relief” come? or was there a turning point?

I got my first break from my chronic pain in highschool. After refusing the kneecap removal surgery that orthopedic doctor recommended, he referred me to physical therapy. After careful strengthening of the muscles around my knees, that awful knee pain disappeared forever! And to think – all those years I’d been told to avoid physical activity, when it was actually the key to managing my pain!

After realizing the power that exercise could have on my body – and my confidence, I got certified as a Personal Trainer. I discovered that I could manage my gut issues by eating healthier and with that, I dove head first into diet fads and high intensity workout culture. 

I felt the burn, bought into the no pain, no gain mentality, drank my pre/post workout shakes, ate my chicken, broccoli and rice and pushed myself even harder. I still believed I needed to be tougher. And I ignored the exhaustion, the brain fog and the migraines that still hung around day after day. I didn’t realize that my body had already been pushed past its limit for several years because I was still completely disconnected from it. 

Then in 2011, I developed intense hip and tailbone pain because my right hip had slipped completely out of place and left my right leg nearly 2 inches shorter than my left. I was finally diagnosed with Craniocervical Instability – a condition where the first vertebra in my neck slips out of place. That creates so much tension through the connective tissue of my entire spine that it actually pulls my hip out of place. 

Everything is connected!

As soon as I began Atlas Orthogonal Chiropractic adjustments – a popping-free adjustment for the first vertebra, my hip went back into place, my migraines disappeared and the chronic pain in the rest of my body became more manageable. 

Shortly thereafter, I was diagnosed with Adrenal Fatigue and low progesterone levels by my naturopathic practitioner. With holistic management, my brain fog began to fade, and my energy levels and hormone imbalances improved. 

This week we are fortunate to learn about living with Ehlers-Danlos Syndrome

At this point, I finally realized that all the pain and fatigue I’d been dealing with for the last 23 years were not actually normal. So I followed my healthcare team’s recommendations and started living a fairly normal life. 

I even got married and had two beautiful daughters!

I was doing ok for several years, but my two pregnancies took a massive toll on my body and my chronic pain, adrenal fatigue, and gut issues flared up and went completely out of control. That was when I finally started seriously looking for answers, because I knew that there was no way a 30 year old should be in so much pain. And it was especially frustrating because I had gotten my Masters in Exercise Science and become a Corrective Exercise Specialist and I still couldn’t manage my own health. 

After talking with several professionals, hypermobile Ehlers-Danlos Syndrome was suggested as a possibility. With that one name, everything clicked and I knew I had my answer. A Physical Therapist friend was able to set me up with an amazing team of PTs who finally helped get my chronic pain under control and a Geneticist confirmed the hEDS diagnosis. 

What steps did you take to cope? or to find acceptance?

Getting my official diagnosis was the biggest step for me in accepting my condition. I spent so much of my life hating my body because of the pain I was in and because I was so aware that it just wasn’t working right. Couple that with doctors and other people making me think that I wasn’t tough enough brought on a lot of self-loathing. Once I understood that there was an actual condition causing my symptoms, I was able to shift from hating my body, to learning how I could better care for it. 

The process of finding healthy forms of movement to manage my pain, learning how to heal my relationship with food to manage my gut issues, and learning how to alter my lifestyle to better support my health and well-being have been the most important steps for me learning to cope with hypermobile EDS. 

And as I’ve learned more about the condition and discovered natural and effective ways to manage it while advocating for myself, I’ve been able to shift from simply coping with it – to thriving. 

What lessons have you learned in your journey while living with hypermobile Ehlers-Danlos Syndrome?

After being dismissed or given useless suggestions by doctors, I learned to believe I was just hypersensitive and needed to toughen up. Of course, I’m all for cultivating a strong mindset. But I tried to get tough by silencing the cues my body was trying to share with me. And that made everything worse. It’s only through listening to my body and believing that my body knows what it needs that I’ve finally been able to turn my health around. 

That and doing boatloads of research to understand what was going on with my body plus learning to advocate for myself and finding healthcare professionals who could truly help me. 

When I finally discovered hEDS, it helped me understand that there was an actual disorder that could affect the entire body – that it wasn’t just me being hypersensitive. This realization completely changed my approach to my health & fitness. 

I could finally trust my body. All these years my body had been trying to tell me that I wasn’t doing what it needed me to do. I wasn’t hypersensitive. Yes, I was physically weak from a childhood of inactivity, but mentally I was tough. Maybe even tougher than most since I had been living a relatively normal life while dealing with levels of chronic pain and fatigue that many people never face. 

My body and I finally started building a healthy, trusting relationship. I started listening to my body’s cues and I stopped trying to push so hard. I learned to be mindful of how everything I did affected my health for better or worse. I changed my lifestyle to prioritize rest and do everything my body needed to heal. 

An elimination diet helped me redefine healthy eating and I discovered foods that calmed my gut, managed my pain, and balanced my hormones. And my physical therapy team helped me treat my body as a whole and taught me a whole new way of approaching my fitness to honor my hypermobile body. 

Listening to my body- Jess Roe

Through this crazy journey, I have finally learned to listen to my body and create a lifestyle that meets my body’s needs. And it’s the active, healthy lifestyle I always wanted. In the last 2 years, I have experienced improvements doctors previously told me were impossible. They told me I would never be able to run a mile, yet here I am exercising and running almost every single day. 

In fact, in 2019 I ran my first 5k and followed it up with a 10k. Not because I wanted to prove anything – but because the exercise and running actually feel really good and help me hold my alignment. The more I run, the better my body feels – as long as I’m listening to my body. 

I finally feel how I always thought I should. Very little pain, plenty of energy, and mental clarity that allows me to be present every single day with my family. And when I don’t have energy, or my pain flares up, I have the tools and support I need to quickly bounce back. I am finally the mother, wife, friend and business owner I’ve always wanted to be. 

I am so glad I have learned to listen to my body and care for it properly. Because in return, my body has shown me that it is capable of so much more than anyone ever gave it credit for. 

My body has shown me that it is capable of so much more than anyone ever gave it credit for. -Jess Roe

What advice would you give to someone struggling with hypermobile Ehlers-Danlos Syndrome?

If you’re struggling with your health journey, try not to get mad at yourself or your body. Your body is so much smarter than you’ve been taught to believe. It knows what it needs and it’s trying to tell you how to care for it. Practice listening to your body and cultivating a positive relationship with it by taking steps to improve your health. 

And just because you’ve tried to get help or get answers and nothing has worked so far, it doesn’t mean that it’s not possible to live a healthy, happy life. 

Do your own research, and talk with as many people as you can to learn about your body and how you can manage your health. Find a coach or healthcare professional who can be an extra set of eyes for you. I AM a coach and I still needed a team to help me figure out what my body was needing!

Learn to advocate for yourself. You know your body better than anyone – even a highly trained doctor. So if you’re getting dismissed and not getting the support that you need, keep pushing. If you feel that something is wrong, or that a treatment isn’t right for you, then follow your gut and don’t give up.  

Living with ehlers-danlos syndrome can take plenty of hard work, but I promise it’s worth it. It is possible to live a healthy, happy life.

Your body is so much smarter than you’ve been taught to believe. – Jess Roe

This week we are fortunate to learn about living with Fibromyalgia- form Jane Versus Pain

Can you tell us how it affected your relationships?

Growing up, I couldn’t understand how other kids had so much energy. I just thought they were tougher than me. I spent so much time avoiding the activities other kids did, that I really didn’t know how to socialize. And to be honest, I didn’t have the brain power or energy to socialize so I stopped putting much effort into friendships. I didn’t know how to communicate with anyone about what was going on with me. Which sadly led to a lot of social isolation and a fair amount of social anxiety. 

What about how it affected your dating life?

For whatever reason, I never had issues with my dating life. I think because when I was in a romantic relationship, I expected more direct and consistent support from my partner than I ever expected from friends. (Related: how to say be direct and yet polite saying no.)

With friendships, I couldn’t manage to communicate what was going on with me and most people would just assume that I was too stand-off-ish to bother putting in more effort. And I found it easier to concentrate on a single romantic relationship than try to nurture a ton of other friends too. 

I am finally in a place to be able to work on my friendships but I would never have gotten this far without my wonderful husband. He has been the most amazing, supportive partner I could ever have asked for. (Related: Signs you’re meant to be)

What does living with Ehlers-Danlos Syndrome teach you that you wish others knew?

The most important thing that I wish everyone knew – whether they have EDS, another chronic condition, or live a relatively healthy life – is that your body is far more intelligent than we’re taught to believe. 

Your body is your one teammate that you are stuck with for life. So instead of hating it and fighting it every step of the way – embrace it! Learn to listen to the cues it gives you. It’s not trying to irritate you. It’s trying to communicate with you. And when you learn to listen to your body, to be mindful of how your choices affect your mental, physical, and emotional health, you will discover that your body is far more capable and amazing than you ever gave it credit for!

And believe that you have a whole lot more control over your health than our society leads you to believe. You don’t necessarily need more pills. There are hundreds of natural tweaks you can make to your lifestyle that will completely change your health for the better. 

I know it can be overwhelming so just start with one small step at a time. You’ll get a whole lot farther with consistent small steps than if you try to do big, sweeping changes and then lose motivation altogether. And if you need help or ideas – reach out to me! Rebuilding your health and fitness through creating realistic and enjoyable habits is what I do best!

This week we are fortunate to learn about living with Ehlers-Danlos Syndrome
This week we are fortunate to learn about living with Ehlers-Danlos Syndrome

Where can we find your blog and podcast?

Find me on Facebook here.

Instagram link is here.

And of course, you can find the podcast here.

Show Jess Roe how grateful you are for her wisdom and advice by sharing this with your fellow spoonies and friends!

Stop making us tear up Jess Roe! Seriously – your words and actions are so inspiring. I think far too often we avoid exercise and nutrition because we don’t see how it helps others. I applaud your fortitude and look forward to supporting and encouraging your journey! You’ve got this!

If you know someone with an inspiring outlook on living with a chronic condition, rare disease, or terminal illness, we are looking for more featured writers. You can submit their information (or yours) here.

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One thought on “Living With Ehlers-Danlos Syndrome

  1. Lovely to ‘meet’ you, Jess! I have undifferentiated connective tissue disease and in my dealing with even rheumatologists, EDS seems very misunderstood. I was told by one I couldn’t have EDS because “you don’t have stretchy skin”. I was gobsmacked and didn’t know what to say! Likewise adrenal fatigue is often not picked up by many NHS doctors, so I’m glad you had a naturopathic practitioner for that and holistic management for some of the symptoms. I’m just so sorry you had to go through so much fobbing off and dismissive responses to start to get some answers and move towards management of the condition(s). Thank you fro sharing some of your journey with us.

    Caz xx

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