What Are The Symptoms of Ehlers-Danlos Syndrome?

This can be a scary question for a lot of people. Ehlers-Danlos Syndrome (EDS) is a group of rare genetic conditions that affects the body’s connective tissues. Things like the skin, bones, capillaries and other organs can be affected. This condition can cause a wide range of signs, varying in severity and type from person to person.

If you’re wondering about the symptoms of EDS, it can usually lead you down the rabbit hole of “self-diagnosis” which can be dangerous. In this blog, we’ll take a closer look at the symptoms of Ehlers-Danlos Syndrome, including how it can affect the body, what causes these symptoms, and what to do about them.

Understanding Ehlers-Danlos Syndrome

To get a good understanding of the symptoms of Ehlers-Danlos Syndrome, it is essential first to understand what causes it. EDS is a genetic condition, so if you have it, it’s not your fault or the result of anything you did! Your genetics affects everything in your body, including the production of collagen, a protein that offers structure and support to the body’s connective tissues. Depending on the specific type of EDS (there are multiple subtypes like hEDS), your body will exhibit different symptoms. For example, it can cause connective tissues to be weak, stretchy, or breakable.

The symptoms of Ehlers-Danlos Syndrome can affect several body parts. That’s the reason you can talk to a group of people with EDS, and one person will have stomach issues while someone else will have really bad joint pain.

Here are some of the most typical signs:

Joint Hypermobility: One of the most common symptoms of EDS is joint hypermobility, which means that your joints can move beyond what a “normal” range of motion would be in most people. This can trigger joint pain, instability, and dislocating parts of your body if you move in a certain way.
Skin Fragility: People with EDS might have weak or stretchy skin that can tear and scar easily.
Non-Stop Pain: Many individuals with EDS experience persistent pain, which can be triggered by joint instability and hypermobility that was mentioned above, muscle weakness, or nerve damage.
Fatigue: EDS can cause interruptions with sleep and make you feel tired all the time. This is one of those symptoms that many people experience for many other reasons. So just because you feel tired, it doesn’t mean you have EDS. It can just be a contributing factor.
Gastrointestinal Symptoms: Some individuals with EDS experience gastrointestinal symptoms that can cause upset stomach, bloating, constipation, or diarrhea. This is another very common symptom that many people without EDS have. You’re probably tired of hearing it, but diet and exercise play a big role in this one.
Cardiovascular Issues: EDS can impact the heart and capillaries, which can lead to symptoms such as palpitations, chest pain, or shortness of breath. Whether or not you have EDS, or if you’re having any symptoms that have to do with your heart, you should see your doctor or cardiologist immediately!
Vision Issues: Some types of EDS can affect the eyes, resulting in vision issues. This is a pretty rare symptom, even when it comes to people diagnosed with EDS.
Oral Issues: EDS can affect the teeth and gums, causing things like puffy gums that bleed. It can also cause teeth to be smaller or have a funny shape.

These are some of the more common symptoms of EDS. But it bears repeating that symptoms can vary widely from person to person, and while you might have one or two symptoms from the list above, someone else may have something completely different.

As I said from the start, reading about the symptoms of a particular disease can take you down a dark rabbit hole. The best thing to do is to talk to your doctor about what you’re experiencing and confirm if you might have EDS. There are multiple tests that can be done to see how likely it is, and you can confirm a diagnosis by consulting a geneticist.

We see many patients that have some of the symptoms of EDS, like joint hypermobility and persistent pain, but haven’t received an “official EDS diagnosis.” We were able to get rid of the pain and work through many of the issues so that they could significantly reduce the pain and get back to living everyday lives again. If you’re from the New York area, click here for a free consultation!

Handling the Symptoms of Ehlers-Danlos Syndrome
OK – so you have some of the symptoms of EDS, and maybe even an indication that you have EDS from your doctor. What can you do about it? Although there is no cure for Ehlers-Danlos Syndrome, there are numerous treatments and things you can do to live an amazing life!

Here are a few of the most common:

Physical Therapy: If you’re having pain in your muscles, joints, or in certain parts of your body, Physical Therapy is one of the best things you can do. Someone who is trained and understands how to work with EDS patients can help you to significantly improve and feel better in your day-to-day life. A physical therapist can also help you get back to hobbies and activities that you stopped doing because of what you’re feeling throughout your body. Not to mention it’s completely natural and doesn’t require medication or surgery. To learn more about how physical therapy can help, book a free consultation with us today!
Medications: There are a number of medications that can be used to manage the symptoms of EDS. This is something you should talk to your doctor about. Just make sure you’re also exploring other routes like physical therapy as well. Many of the patients we see are frustrated that they had to be on medication longer than they wanted because they weren’t told about alternatives.
Way Of Life Modifications: This one is a bit controversial for us. Generally, Way Of Life modifications can be split into two categories. First is stopping activities that cause you pain and discomfort. The second is using tools like braces or splints to support different body parts. While both of these can be helpful in managing the symptoms of EDS, there is usually a better approach.

A physical therapist can help you relieve pain and do activities in a safe way that doesn’t cause pain. So stopping something altogether and putting limits on your life is not something we believe in. Tools like braces and splints may sometimes be necessary depending on your exact symptoms. But again, when combined with physical therapy, you should become less and less reliant on these tools over time.
Surgery: In severe cases of EDS, surgery might be necessary. This is something that you’d discuss with your doctor and is usually a last resort after alternatives like Physical Therapy have been exhausted. If a doctor recommends surgery without trying physical therapy (with a PT that knows how to work with EDS patients), that’s usually a big red flag, and you might want to get a second opinion.
Support Group: Because of the lack of resources surrounding EDS, even amongst doctors, a support group can be very helpful in knowing that you’re not alone in what you’re going through. A support group can advise and assist in handling living with EDS.
Mental Health Assistance: Dealing with chronic pain and other signs of EDS can take a toll on anyone. Finding a professional that can help manage the psychological and psychological aspects of EDS can be just as important as dealing with the physical symptoms.

In addition to these strategies, it’s very important to have regular check ups with your medical team to monitor signs and identify future issues early. If there is some new symptom or complication, that’s something you want to catch and not wait for it to become a problem.

By understanding the ins and outs of EDS, we can work together as a team to improve the lives of everyone affected by it.

If you have EDS, or think you MIGHT have EDS, I can’t say it loud enough. You are not alone, even if it might feel that way! Finding answers, whether it’s through a support group, your primary doctor, a specialized healthcare team, or a physical therapist, is a very important step.

While the symptoms of EDS can be challenging, don’t give up! You can still live an amazing life with EDS!

If you need help taking that first step, book a free consultation with us today!