5 Non-Glamorous Symptoms of Hypermobile EDS

I have Ehlers-Danlos syndrome (EDS), hypermobility type, and I have noticed it becoming a more popular diagnosis. I believe that it is very under-diagnosed, but I have had several people tell me that since they are flexible that they must have it as well. EDS is most widely known for hypermobility, but a large portion of the population is hypermobile without symptoms, which means they do not have EDS.

When I have friends questioning whether they may have EDS or not, I first send them the new diagnostic criteria, which includes many symptoms other than hypermobility. Sometimes EDS may seem glamorous because it is mostly invisible, but many of us experience several non-glamorous symptoms as well. These symptoms are embarrassing and a little bit shameful at times, but it is part of the diagnosis for many of us.

Here are five non-glamorous symptoms of EDS, hypermobility type:

1. Incontinence

Wetting the bed and leaking during coughs and sneezes is only for people who have had children, right?

Wrong. Thankfully, pelvic floor rehabilitation can keep struggles in this area a little more manageable.

2. Hemorrhoids

Only older folks get hemorrhoids, right?

Wrong. Many EDSers deal with these on a regular basis, and while it is not pretty, it can be improved a bit with lifestyle changes.

3. Night Sweats

People only sweat when they are anxious, exercising, or hot, right?

Wrong. Many people with EDS have autonomic dysfunction, which can cause sweating to appear at ridiculous times, especially at night. It’s not a small amount of sweat either, and many of us have to get out of bed to change our clothes and sheets.

4. Red or Purple Extremities

Feet and hands are the same color as the rest of the body, right?

Wrong. Along with the night sweats, autonomic dysfunction caused by EDS makes blood pool in the hands and feet, especially during hot showers or while standing. The extra blood turns the feet, legs, and hands dark red or purple, which isn’t always pretty, and it is painful as well.

5. Bowel Problems

Only those with inflammatory conditions have persistent bowel issues, right?

Wrong. Many EDS patients struggle with chronic diarrhea, chronic constipation, or a mix of both. It can result in immediately necessary bathroom trips, additional gastrointestinal symptoms, and even fainting. Gorgeous.

While these symptoms are not the most fun to talk about, they are an every day reality for those diagnosed with hypermobile Ehlers-Danlos syndrome. Please be kind and considerate to everyone. You never know what they could be struggling with on the inside.

Getty Image by a-wrangler

This story originally appeared on Blythe With Stripes.

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

close up photograph of a butterfly on a leaf

My Mental Illness Does Not Invalidate My Physical Illness

I recently went to my doctor for increased symptoms of fatigue and pain leading to a major decrease in my activity. During the appointment, I asked some general questions to see if there were more treatments I could try, and I informed my doctor of my recent PTSD diagnosis. As soon as that cat was [...]
Woman in a wheelchair. In one photo she is alone, in the other she holds a Labrador puppy.

How My Service Dog Changes the Way People See Me

Last week, I had my first appointment with an occupational therapist. She thinks she will be able to help me build up to returning to work and school, but it will be a very slow process to learn my limits and stay inside them. I will be using a wheelchair almost all the time, and [...]
Charlie sitting on her rollator, with her eyes closed. She is in front of a wall with blue, black and purple street art on it. The entire image is mirrored down the middle.

Navigating the Space Between Visible and Invisible Disability

I recently started using a rollator (outdoor walker). Before getting this mobility aid I had completely stopped leaving the house by myself, only leaving the house with the assistance of my partner or my parents less than once a week. Since getting my walker, I have been going out at least once a week by [...]
A woman holding a new born baby that is looking up at her.

To a New Mum With EDS, From Your Fellow Spoonie

First of all, congratulations. I bet that little bundle of joy is absolutely gorgeous! I was lucky enough to welcome my own daughter into the world in January of this year, so I know how tough pregnancy and delivery with Ehlers-Danlos syndrome (EDS) can be. My own labor was quite short, but very eventful, as [...]