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.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

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