What do I do now that I have been diagnosed with an Ehlers-Danlos syndrome?

1. Build a healthcare team:

Your providers do not need to know what Ehlers-Danlos syndromes are when you first start seeing them. You need to look for providers that are interested in learning about EDS and working with you to achieve your best quality of life possible. It is your job to educate them and make sure that they are all communicating about your care. Know that not all providers will be receptive.

We recommend that everyone with Ehlers-Danlos syndromes have the following providers: 

Primary Care Provider (PCP): Your PCP will be your home base. The PCP will refer you to specialists and physical therapy, maybe order some tests, and prescribe certain medications that they are comfortable with. It is very unlikely that a PCP will diagnose Ehlers-Danlos syndrome, but if they are very knowledgable about it and comfortable with it, they might.

Physical Therapist (PT): This will be your number one way to get and remain functional and decrease pain. Many physical therapists may have not heard of EDS or don’t know how to manage a connective tissue disorder. That’s okay. Talk with your PT and make sure they are invested in helping you get better and are willing to learn. Your therapist will need to learn how to assess and treat pelvic instability in depth. It will be essential to have all of your joints aligned before doing your exercises. Don’t stress about this part. Your PT will learn to do this when you are in for appointments, your significant other can learn, and there are self correction techniques. Kevin Muldowney is a physical therapist in Rhode Island who wrote, Living Life to the Fullest with EDS, after ten years of working with EDS patients with successful results. This book is very helpful for PTs to use for guidance. It can be purchased on Amazon. Michael Healy is another excellent PT with tons of experience, also located in Rhode Island. If it is financially and logistically practical for you, it may be worth seeing one of these providers for a one time appointment to get an initial plan for how to treat your specific problems. It is absolutely not necessary though.

Try not to feel overwhelmed about the following list as many people will not need to see these providers or may have a plan developed and not need ongoing care. Depending on your situation/symptoms, the following providers may be helpful:

Allergist: The allergist will help manage mast cell activation syndrome.

Cardiologist: The cardiologist will check your heart and large vessels and help manage any issues with that. If there is an abnormality the cardiologist may want to see you at regular intervals to monitor for any changes. The cardiologist can also investigate postural orthostatic tachycardia.

Counselor: The counselor will help with depression, anxiety, and other disorders by using cognitive behavioral therapy (CBT), dialectical behavioral therapy (DBT), metacognitive therapy (MCT), and other techniques to help you learn how to cope.

Gastroenterologist: The GI doctor will diagnose and manage digestive issues.

Geneticist: If you’re reading this part you probably already saw a geneticist. You will likely only see the geneticist once. They diagnose EDS, but do not manage it. They will give you a long print out of what to do and what not to do, and what EDS is.  

Neurologist: The neurologist will investigate and help manage autonomic dysfunction, and chiari malformations.

Nutritionist: Sometimes diet changes can make a big difference in managing symptoms and decreasing inflammation. A nutritionist can help guide you, but you can also make changes on your own.    

Orthopedist: Orthopedists can be very specialized. You may see one for your hip, another for your knee, another for your shoulder, and so on. The orthopedist can do injections, and help you decide if surgery will be a good option or not.

Pain management: These types of specialists will offer injections and some medications. They do not typically prescribe opiates. Their goal is to help you manage your pain without opiates.

Psychiatrist: The psychiatrist will help manage depression, anxiety, and other psychiatric disorders by prescribing medications and maybe do some counseling with you.

Rheumatologist: Some rheumatologists are very knowledgeable about EDS and what resources are available. The rheumatologist may help connect you with other specialists, order some tests, and prescribe certain medications. Some rheumatologists will be able to diagnose EDS.

2. Join a support group:

New Hampshire EDS Support Group is on Facebook and meets the last Sunday of every month from 4-6pm, unless otherwise specified. The location varies. It is posted on Facebook.

3. See human resources or the employee assistance program at your work to make any necessary accommodations at work. It is your legal right to have “reasonable” accommodations made. Request an ergonomic evaluation.

4. Educate your family and friends.

Some people won’t seem as interested, but it may be that they just don’t know what to say. Others will not understand that it is possible to be in pain all of the time. It’s okay. People all have different reactions. The best you can do is be patient with them and educate them.

5. Learn how to pace yourself. *

This is so incredibly important. Doing too much and then having to rest and recover for several days after starts a cycle that could cause you to make compensatory movements and lead to deconditioning of the very muscles you need to be working on. You will have a better recovery and stay stronger if you maintain a slower, more consistent pace and take frequent breaks. Sometimes we have to over-do-it, just expect that you will need recovery time.  

6. Manage your expectations.

Realize that some of the things you used to do, you may not have the ability to do any more, or you may have to make adjustments. It’s okay to not be able to do as much as you were once used to. You’re still an important, beautiful person that can have an amazing life.

7. Talk to your family about what your needs are and any accommodations you may need around your home.

There is nothing wrong with asking for help. Try not to feel guilty about it. If your loved one were in the same situation, you would be more than happy to help them out.