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7 Symptoms of Ehlers
Have you recently been diagnosed with Ehlers-Danlos syndrome but still have symptoms that don’t appear to be directly related? Do you have a friend who is incre
Marcia Cristiane Perretto
May 9, 2018 3 min read
7 Symptoms of Ehlers-Danlos Syndrome that Google won’t tell you about
Have you recently been diagnosed with Ehlers-Danlos syndrome but still have symptoms that don’t appear to be directly related? Do you have a friend who is incredibly flexible and are wondering what kind of symptoms they experience that you might not see? You're not alone!
Ehlers-Danlos syndrome is an inherited disorder that effects the “glue” that holds our bodies together. Skin, joints, and blood vessel walls are all effected by the disorder. Symptoms include being overly flexible or having stretchy or fragile skin that often doesn’t heal well. However, it is an extremely complex illness that can cause many serious issues beyond just “being flexible”.
Here are 7 unexpected symptoms of EDS:1. Extreme fatigue
Many EDS patients get tired doing next to nothing, taking days to recover from things that most of us are able to do without even thinking. It is extremely important for EDS patients to get the rest that their bodies need because they are literally unable to function without it. However, adrenaline issues can make falling asleep extremely hard, creating a vicious cycle2. Gastrointestinal issues
EDS can affect all of your organs, including your bladder and bowel movements. This means many EDS patients have stomach issues like bloating, diarrhea, constipation, nausea, acid reflux, and difficulty absorbing nutrients.3. Foot problems
Our feet are made up of 33 joints and more than 100 muscles, tendons, and ligaments. EDS affects all of these, which can cause numerous issues in the feet of EDS patients. Effects can range from having a high arch to being flat footed. These symptoms can cause pain and discomfort for EDS patients if not addressed.4. Less wrinkles
Due to the collagen in the skin being extra stretchy, many EDS patients experience a lack of wrinkles as they age. This collagen may help EDS patients look younger and can also cause skin to feel extremely soft. Doctor’s even describe the skin as “velvet-soft”.5. Inability to relax
Some EDS patients may be unable to relax their body for fear that a joint will dislocate due to simply letting their guard down. This also makes it extremely hard for EDS patients to fall asleep or finding a space to lay down comfortably. Some patients report only being able to sleep in a certain position on the couch. Laying down in a bed can cause joints to dislocate as soon as the patient relaxes.6. Dizzy or fainting-like spells
Due to issues with the autonomic nervous system (which manages automatic body processes like heartrate and blood pressure) EDS patients are often faced with blood pressure that is too high or too low. This can cause the patient to feel extremely light headed, dizzy, or faint especially when standing up. Showers and hot tubs can be dangerous for them for this reason.7. A love for zebras
The zebra is the mascot of EDS patients. There’s a saying that goes “when you hear hoof-beats, think horses, not zebras.” It makes doctors think of the most common causes to symptoms they are presented with. Because of the variety of EDS symptoms, doctors sometimes have a hard time with an EDS diagnosis. The horse analogy works often – but not always, zebras, as rare as they are DO exist.
So there you have it. Life with EDS is not an easy one. But with the proper treatment and care, these wonderful zebras can live long, fulfilling lives.
P.S. If you’re interested in learning more about Ehlers-Danlos syndrome or would like to talk to our physiotherapist who understands you and your symptoms, visit our website, https://www.actifypt.com/hypermobility, or call (561) 366-2435. There’s never a charge for having a conversation!
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16 Signs You Grew Up With Ehlers
The Mighty community shares the signs they grew up with Ehlers-Danlos syndrome (EDS).
16 Signs You Grew Up With Ehlers-Danlos Syndrome
Paige Wyant • Follow June 29, 2017 Share 7.9K Save
Join The Bendy Bunch, a group for Mighties who understand what it’s like to live with flexible joints and more.
Article updated June 14, 2022.
Although Ehlers-Danlos syndrome (EDS) is a condition you are born with, it may take many years (or decades) before you are diagnosed. During childhood, it might just seem like you’re more flexible or prone to sprains and injuries than the other kids. Doctors might assume your discomfort is just a result of “growing pains.” It may take the progression of several of your symptoms before doctors are able to recognize you have EDS.
“EDS, I would describe it as a genetic disorder of connective tissue,” Paldeep Atwal, MD, a board-certified geneticist, told The Mighty. “It’s when the strength and the structural framework of that connective tissue isn’t as it should be, that’s what’s causing EDS and other connective tissue disorders.”
There are 13 subtypes of Ehlers-Danlos syndrome, though the hypermobile subtype is the most common. Your symptoms will depend on your subtype, but most people with EDS experience overly flexible joints, regular partial or full joint dislocations while doing everyday activities, stretchy or fragile skin, easy bruising and chronic pain. Because it’s a complicated condition that overlaps with many other chronic illnesses, it’s not uncommon if it takes more than 10 years to get an EDS diagnosis.
After your diagnosis, you might look back and realize that many of your childhood “quirks” were actually early signs of the illness. We asked our Mighty community to share signs that they grew up with Ehlers-Danlos syndrome, which they can now recognize in retrospect. Perhaps some of these will sound familiar to you, too.Here’s what the community shared with us:
1. Having Extra Flexibility
If you were the kid who could always ace that flexibility test during gym class, it may have been one of the early indicators you have EDS. Being more flexible than average — sometimes way more flexible — is one of the most common symptoms of the condition. “People tend to be hypermobile. It’s really a hallmark feature,” Dr. Atwal said.
“I was always extremely flexible as a child, even more so than other children my age. At the time it was a benefit because I was into gymnastics, ballet and cheerleading. Not knowing that all the flexibility was a bad thing [and] would later cause me so many problems.” — Grace S.
“I was always flexible but it wasn’t recognized as medically significant until later in life. My first adverse symptoms looking back were that I had GI issues from infancy.” — Erin M. J.
“When sitting twisted up like a pretzel with your feet behind your head playing video games was a totally normal thing for a Saturday afternoon… and you had no idea that wasn’t ‘normal.’” — Laura M.
2. Thinking You Were Double-Jointed
Connective tissue helps hold all your joints in place. Because EDS can impact the quality and amount of connective tissue in your body, many people with EDS are prone to full or partial joint locations. In the case of seeming double-jointed, you’re likely experiencing subluxation, or partial joint dislocations, which are often painful.
“I can sublux both shoulders without conscious thought. As well as other joints that snap, crackle and pop. I just thought I was double-jointed.” — Jacqulyn S.
3. Experiencing Regular Joint Dislocations
In addition to partial joint dislocations, EDS can also make you prone to full joint dislocations. Many people experience joint dislocations, such as in their elbows, shoulders or jaw, while doing everyday tasks like trying to pick up a shopping basket at the grocery store. Joint dislocations occur due to differences in the connective tissues around your joints.
“Dislocating something and not realizing that’s what you were doing.” — Emily M.
“My elbow kept dislocating. I also had many soft tissue injuries as a kid. It wasn’t until I really injured myself and it wouldn’t heal [that] my doctors finally put it together.” — Christa R.
“My sister and I weren’t allowed to hold hands when we were younger because we would dislocate each others’ arms. Turns out we both have EDS.” — Jane B.
“I once dislocated my jaw while eating a bowl of cereal. I avoided that cereal for years, because I honestly believed it was the cereal’s fault.” — Melanie G.
4. Always Wearing Support Braces
When your joints are prone to popping in and out without warning or you experience pain and weakness, it’s only natural you might try braces or splints to keep those joints in place. Of course when you’re a young child, you may be one of the only kids who needed extra support to play on the playground safely.
“All of my teachers thought I was a hypochondriac because I was always wearing wrist or knee braces and going to the nurse with a headache or to get ibuprofen.” — Kelly S.
“Having more splints and braces than clothes.” — Julia S.
5. Bruising Easily
Collagen — the connective protein impacted by EDS-related gene mutations — largely determines the texture and elasticity of your skin. Many people with Ehlers-Danlos syndrome have fragile skin that’s prone to bruising easily and your wounds may heal slowly. Sometimes you won’t even recognize what caused the bruise.
22 Signs You Grew Up With Hypermobility
The Mighty community shares signs they grew up with hypermobility.
22 Signs You Grew Up With Hypermobility
Paige Wyant February 22, 2018
While it’s not uncommon for people to be “double-jointed” in one or two parts of their body, having loose connective tissue in the joints that allows you to easily extend them beyond their normal range of motion can be indicative of hypermobility. For many people, hypermobile joints are painless and not caused by an underlying medical issue, but for some, hypermobility can be a painful symptom of a chronic condition – such as Ehlers-Danlos syndrome, joint hypermobility syndrome or Marfan syndrome.
Although it can sometimes take years (perhaps even decades) to receive a diagnosis that explains your symptoms, many people with illness-related hypermobility can trace their issues back to adolescence or even childhood. Perhaps you were able to bend your fingers and arms in ways other kids couldn’t, or were always rolling your ankles and getting injured during gym class. But if this was your “normal” growing up, it may have taken some time before you realized that all the pain, discomfort and dislocations were actually indicative of an underlying condition.Related: Why I'm Not Defined by My Chronic Illness
Sometimes receiving a diagnosis as an adult not only puts a name to your current set of symptoms, but can also make sense of some of your childhood experiences. We asked our Mighty community to share signs they experienced hypermobility growing up, which they now recognize in retrospect. Maybe some of these will ring true for you as well.Here’s what our community shared with us:
“Looking back, I would sit with my legs folded like a pretzel and stretch in ways I now know most people cannot do.” – Krystal K.
“I was very clumsy – tripped a lot, ran into walls and furniture, etc…. I was never able to maintain correct finger position on violin or piano for long since my fingers would ‘collapse’ and lock back instead of maintaining a strong curve. I also sprained my neck several times and constantly had ribs popping out. I had no clue those weren’t normal injuries for most people.” – Rayla S.C.
“My knees dislocated all the time when I was little! I also thought it was normal to be able to twist my arm in a 360° circle. I have Marfan syndrome.” – Cassandra A.B.
“In high school, the look on my friends’ faces when they saw my thumbs can bend back to touch the lower arm. They gave me the same look when they saw my fingers’ joints all bent like a zig-zag. I realized by said looks that being able to bend like that wasn’t normal.” – Evie D.S.
“I set flexibility test records every year that to this day have not been broken at six different schools.” – Unity M.
“Being the kid that would be running round playing football one day, and be on crutches for the next six weeks with a ‘funny knee.’ No doctors I saw could figure out what was wrong with me.” – Zoe K.H.
“Having physical therapists tell you at 13 years old that they have never seen anyone’s knees hyperextend that far backwards and call everyone else over to look.” – Kara H.R.
“I definitely should have noticed my hypermobility more when I was younger. When I played soccer in middle school my kneecaps would go in and out very easily. Bowling and basketball [were] always difficult because my fingers would hyperextend and dislocate, making things painful and causing me to drop the ball. That same problem with my fingers would cause me to drop plates of food or cups of coffee. So many things!” – Catherine A.M.
“I would just hang out with my feet behind my head. Just because I could. Freaked my parents right out.” – Lindsay-Sarah C.
“I was constantly getting injured growing up, mostly joint dislocations. I was as flexible as most of my friends who were in dance classes all growing up, even though I had never taken a dance class.” – Delsy G.
“I had so much trouble holding a pencil! My fingers would turn white and cramp because I’d try so hard.” – Sam O.
“Not being able to run properly. I used to ‘gallop’ (there’s no better way to describe it) to keep my hips in. P.E. teachers used to yell at me for ‘goofing off’ but if I ran properly I’d start falling over, crying, etc. Turns out I wasn’t just trying to get out of it, my hips were just subluxing/dislocating!” – Alecia R.
“My body has been doing the snap crackle pop symphony as long as I can remember.” – Jess S.
“The fact that I could contort into the craziest hiding places while playing hide and seek! Even kids smaller than me couldn’t fit in my hiding places.” – Nicolette K.
“I was really into dance and gymnastics as a kid because I was so flexible. I was always the most flexible on my team; little did I know that that was the reason I kept getting injured over and over.” – Shyla M.
“I hated the no-stretch Levi’s and other denim jeans before bell bottoms and baggy pants came into style in the ’90s. It literally took me until now to put it together that it was because taking them off always subluxed my ankles, and resisted my knees and made my hips pop.” – Caitlin G.