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7 Symptoms of Ehlers-Danlos Syndrome that Google won’t tell you about

Updated: Feb 5


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 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!

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67 Comments


Lydia Addams
Lydia Addams
May 10

"Google won't tell you" lol Google brought me here.

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abigail nortey
abigail nortey
Dec 19, 2023

Thank you for the quick run down that always helps to start good conversation for those that want to have it. I have a question for fellow Zebras on here that, as I do, continuously keep looking for relief and life.


What type of medications are you being prescribed other than appropriate excercise for your particular type of EDS?


One lady who lives on a farm said something to the effect of '.....not being able to live disabled...', this resonated!! All of the frustration and inability to explain random all over pain that may be there for a second or a month, the years of searching g and Dr's Uber egos and on and on. Most on here get…

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Nah Man
Nah Man
May 24
Replying to

I've been given almost everything under the sun. I wasn't diagnosed until a couple of years ago and sadly found out (both parents are deceased) that both parents had EDS (on the DL, they both had the beighton? Tests done, I as well when I was diagnosed - for an Idea, my mother was born in 46' died in 2013, non natural causes, but she looked 40 to everyone and had the "velvety smooth skin" that I as well have


I'm not sure, since I haven't had thorough blood work done, what type of EDS I have, I mean my skin is smooth, easily damaged from just touch, a bug bite will look like a bullet hole, my skin is…


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Missy Smith
Missy Smith
Nov 27, 2023

I am still waiting and searching! I have Adhesive Arachnoiditis, fibromyalgia, NASH, degenerative disc disease, hbp, hypothyroidism, etc. now I am being tested bec I cant feel the normal sensation of touch or scratches all over mostly. Head, face, hands, feet. I am just about ready to give up. My ortho said I have something at base of skull. Others say nope nothing there! I mean if they don’t know I surely don’t! So ready to just be done with it all. So frustrating living in a small town no one treats half of this.

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Janette Lindsay
Janette Lindsay
May 30
Replying to

Your diagnosis of fibromyalgia covers the parathesia and thyroid issues, too. There are 250 documented symptoms of Fibromyalgia. Not everyone has them all, or at least, not all at the same time. Even tinnitus and hyperhydrosis (excessive sweating) are symptoms, the latter often accompanied by a surge of heat in a wave, similar to that experienced by perimenopausal women. This is due to the effects on the hypothalamus. Fibromyalgia affects the central nervous system. At the very least, you should try duloxetine, gabapentin and amitryptiline. There is apparently a new drug to be announced in the latter half of 2024. Other than these drugs, you can add magnesium and vitamin D, take gentle exercise regularly and frequently, swimming in heated…

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Lunette Von Loon
Lunette Von Loon
Nov 03, 2023

I know some people with other forms of EDS felt this article lacked proper information. Regardless I still appreciate this article. I myself suffer from HEDS, MCTD and MCAS. The people around me don’t seem to understand just how debilitating it can actually be. I’m grateful to find an article online that I can direct to my friends and family so they can better understand what I go through on the daily basis. I know some people have mild Eds and for others it’s much more severe. Mine is unfortunately severe. The slightest thing will send me into a full blown flare that can last day to weeks! Thank you for taking the time to share this with everyone!!!

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abigail nortey
abigail nortey
Dec 19, 2023
Replying to

Not my article but thank you for your response! Perhaps some folk might take a look and see how you can make your thoughts known, while still being courteous and grateful! ☺️

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thirty-eight
Oct 24, 2023

I'm a 56 year old female. I was unable to walk, so at age 3, they did experimental surgery ( at the time ) We are talking the 60s.Through bone grafting from my shins to under my ankles, several rounds of plaster casts, walking casts , then years in corrective shoes, I was walking free of aid from 5 yrs old til now. I've always been flexible, to a point where others who saw a casual finger out of shape, or any other hyper position I took, well, .. it would panic them.

Giving birth was fun. Month before my son was due, I had to stay in bed.Hormones acting on a pelvic region that was already loosely knitted together..…

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Ann Bailey
Ann Bailey
Dec 16, 2023
Replying to

Similar age when I found out about EDS. Not as flexible but was a bit in childhood. Many hernias needing surgical repair. Face of Vascular Ehlers Danlos. Cutis laxa under soles of feet & very extensible stretchy eyelids. Floppy heart valves. Got the same numbness & 'buzzing' in both legs & arms then muscular fibrillations & random intense spasms (visible enuf on video & to drs) in any limb, bilateral Carpal Tunnel and POTS with 'saddle anaesthesia' + massive migraines. Still no answers. Two neurologists & neurosurgeons said the arthritis in neck - while mild - might be the only cause. And post-Covid very likely made it worse. Scoliosis in all planes is mild but together with ligamentous laxity (made…

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