8 Tips for Patients Newly Diagnosed with Ehlers-Danlos Syndrome
Once you are diagnosed with Ehlers-Danlos Syndrome, it can be an overwhelming process to find supportive medical care and learn ways to live life more efficiently and safely. Get a head start by gleaning some valuable pointers from the experiences of veteran EDSers like Ellen.
The information in this article should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network or EDSawareness.com.
By Ellen Lenox Smith, Columnist
Ehlers-Danlos Syndrome (EDS) is a condition that causes one to be born with deformed connective tissue, the “glue” that holds the body together. At this time, there is still no cure to correct this problem, so living life with this condition means a accepting a certain level of chronic pain.There are simple things to learn to live your life with EDS more safely. For instance, learning how to properly strengthen the muscles that are on overload doing their job, along with that of the useless ligament and tendons. Or understanding how certain twists and turns bring on other slippage of the body.
Living with Ehlers-Danlos Syndrome means, at times, a long, lonely and difficult journey burdened with a constant search for direction on how to try to create something resembling a normal life. I am 65, but it wasn’t until eleven years ago that I was finally given the correct diagnoses of something I was actually born with!
There have been times that I felt guilty for almost wishing I had been given a diagnosis of cancer — for then the doors of hope, direction, plans and medical interest would have been with me at all times. Instead, as many other EDS patients have learned, we cope with the unknown, judgment from friends and even family, isolation, confusion, and the lack of consistent knowledgeable help.
All I ever wanted, when first diagnosed, was for someone to reach a hand out and guide me. That hand has never been there. So, instead, I have spent the past eleven years attempting to help prevent others from having to replicate my experience. I simply wish to assist other EDS patients avoid some of the uncertainty and stress that I was forced to experience.
The task is often overwhelming and difficult, but you have no choice. This is the life you have been given.
With that in mind, I would like to make suggestions to the newly diagnosed, in hopes that your journey will begin safely by addressing these issues:
1) Confirm with a knowledgeable geneticist that you have EDS. If you get the feeling they do not understand or believe you have EDS, then go to another geneticist. I met with three before I was convinced and accepted the diagnosis.
2) Mourn your losses. It’s okay and necessary to allow yourself to mourn the loss of your past life — it will never again be exactly as you have known it. As you go through that process, remember you need to reach the goal of moving on.
3) Address pain control. Accept that you cannot take this journey on your own. You need to address your pain to have a chance of living as normal a life as you can. You might be like many of us and have trouble metabolizing certain medications. In that case, DNA drug sensitivity testing would help you to identify a compatible pain medication.
Many respond beautifully to medical marijuana instead of opiates. It can be taken in a simple dose of oil at night, that not only allows you to sleep but also carries pain relief to the body even into the next day.
4) Be evaluated by a neurologist for common EDS conditions such as tethered cord, Chiari I Malformation, and instability of the neck . This is a very important. Every patient should have this evaluation and have a neurologist monitor you. Many of us need to have the tethered cord released to end issues with the bladder, kidneys, pressure in the chest, and issues with legs. If you test positive, get it done and then you will feel so much better and be able to progress onto physical therapy more successfully.
Instability of the neck will cause havoc with your body if strengthening does not succeed. Chiari I Malformation must also be addressed. Any or all of these may be an issue for you in time, but please know that correcting them when the time is right will make the difference in moving forward again.
5) Find a good manual sacral physical therapist. This is your chance to take better control of your life by learning, through the guidance of a manual therapist. “Living Life to the Fullest With Ehlers-Danlos Syndrome” is a new book written by my therapist, Kevin Muldowney. He learned by taking on many EDS patients at his clinic, that there are safe ways to strengthen our muscles. I have been through the protocols and have found they work for me. ( View the video about his PT protocols.)
You’ll need to stay loyal to the daily workouts. But believe me, I love being proactive and so appreciate the good that is now showing — like having the sacrum hold!
6) Develop a network of doctors that understand EDS or are willing get educated. Feel free to visit my website to see if a doctor is listed near you. Also feel free to contact us if you have a good doctor that we can add to the list.
Remember, we are complicated and never get all better. That is a lot for a doctor to want to take on. Be patient and look for compatible personalities and let them learn through you.
7) Be sure to have a cardiologist. You should have an echocardiogram (echo test) done yearly. The test uses sound waves to produce images of the heart and allows the cardiologist to see if your heart is beating and pumping blood correctly.
8) Determine drug and food allergies. I wish years ago I had a clue that there was testing out there to see why I had bad reactions to some medications and foods since birth. A simple DNA drug sensitivity test can help you find a safe drug to be able to put into your body. The same goes for food sensitivity testing. You will learn what foods are causing issues or what drugs are not metabolizing.
Both these issues are VERY important to address. If you keep taking medication or eating foods that are not compatible to your body, then you are adding to the inflammation in your system. More inflammation means more pain due to the increase of subluxations.
It’s also important to remember that you are not alone. Find a local EDS support group and learn as much as you can to live more safely with this condition. Watch an educational video about support groups and local EDS awareness.
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.
For more information about medical marijuana, visit their website.
Ellen Smith was a speaker at the 2015 EDNF Conference and gave a Webinar about Medical Marijuana for the EDS Awareness Education Programs.
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