Tips for People Newly Diagnosed With EDS

After what was likely a long journey, upon diagnosis you learned that you are among the estimated 1 in 5,000 people who have Ehlers-Danlos syndrome (EDS). Although you may be relieved to finally know the cause of your loose joints and other symptoms, you my still need guidance.

Here are some tips for people newly diagnosed with EDS.

Grieve your losses

It’s fine and even necessary to mourn the loss of your past life, as life will be different once you have a diagnosis. As you go through this process, remember that the goal is to move forward.

Get a neurologist to evaluate you

Get a neurologist to check for possible neck instability, a common condition that can cause other physical problems if left untreated. Treating such instability early can keep you from progressing to a need for physiotherapy, or help to guide the physiotherapy best suited to you.

Get supportive braces

You may find it beneficial to have braces with varying levels of support for problem areas. Such support can include knee, elbow, and ankle braces, finger splints, and wrist supports. You may also need a cervical collar. Your physician can advise you on what kind or types of support would best help you.

Keep moving

Overly flexible joints in EDS can cause problems such as arthritis and dislocations. Still, you have to keep moving to prevent deconditioning.

• Learn to move safely within a normal range of motion
• Change positions often when standing, lying, or sitting
• Increase exercise repetitions and resistance slowly over time
• Avoid straining
• Consult a physiotherapist with EDS expertise to learn the best exercises for you

Address pain control

You may be experiencing chronic pain, a common symptom of EDS. Talk to your physician about it; the doctor can prescribe pain medication if need be.

Get better sleep

Research has shown that EDS can cause various types of sleep disorders, ranging from insomnia to obstructive sleep apnea. Here are some things you can do that may help you get a better night’s sleep:

• Set a sleep schedule
• Create a dedicated sleeping space
• Learn breathing and relaxation techniques
• Avoid stimulating foods and drinks prior to bedtime
• Expose yourself to daylight, especially in the mornings
• Limit daytime naps to 20–30 minutes

Get educated after your diagnosis

You may want to find out as much as possible about your condition, and stay abreast of the latest research and developments. Our website provides a lot of information about the disease. We also publish news stories, health insights, and columns written people affected by the disease on a regular basis.

Develop a doctor network that understand EDS

Remember that EDS is a complicated condition and not every doctor is experienced in dealing with it. Contact a patient organization such as The Ehlers Danlos Society if you need help finding a specialist.

Get your heart checked

You should have an echocardiogram done annually. The test allows a cardiologist to see if your heart is beating and pumping blood correctly.

Prepare for emergency care

There may be times when you have to seek emergency care. In EDS, complications such as dislocations, or lacerations, broken bones, and even heart attacks may occur. It would be helpful to have ready a wallet-size card that explains your disease to medical personnel.

Last updated: July 1, 2020

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.