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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 cycle
2. 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 heart rate 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!
I might have a very mild version of it alongside Adhd, autism and Hiv just another thing to add to the shitshow. Sending love light and healing to you all. Oh Life!
Who else has the problem, you can't stop moving because it hurts, until it's so bad you fall on your face for days to weeks to months? All the doctors say to do is physical therapy, exercise and anti-inflammatories. I cannot take anti-inflammatories. I move constantly because it hurts to sit still and ADHD does help to keep moving. However the memory is crap because of the amount of pain that I'm constantly enduring with nothing to help alleviated any. When are the doctors going to help with the uncontrollable pain? I don't want to smoke weed. CBD does not touch it. I am tired of a life like this. I died in my 30s because of what they say…
How am I supposed to find a doctor to Dx me? Every doctor I talk to dismisses my concerns.
In response to Naomi's comment, there are no universal food rules for EDS. Generally speaking though, it's good to avoid highly processed foods and added sugars because they tend to elevate inflammation. To your question about supplements, there's an incredible one called Joint Genesis which you can find here
Hope this helps
At 65 I started taking advanced collagen and glucosamine contortion msm. I feel about 70 less pain. Wish I started sooner.