By Ellen Lenox Smith

Everyone’s journey living with Ehlers-Danlos syndrome (EDS) is different, making it difficult for the medical community to learn how to help us. There are 13 different subtypes, with various levels of severity and impact. While some are able to live a decent life with little pain, others cope with constant subluxations and even dislocations. Some patients also have involvement of the spine and spinal cord, such as tethered cord, instability of the neck, and Chiari I malformation.

While we are all very different, there are many similarities. That means there are common strategies and techniques that can be used to address physical issues and improve the quality of your life.

My advice comes from 69 years of living with EDS (although I was not diagnosed correctly until the age of 54, which is inexcusable!). I’ve had 25 surgeries and tried countless therapies and interventions.

So, I do all I can to pass forward anything that I have tried that has helped me. We need to support each other, help remind ourselves that this is not in our head, and share our personal experiences and information as we wait for the medical world to catch up with what we have learned.

Please note the information in this post should not be considered as professional medical advice, diagnosis, or treatment. It is for informational purposes only and represents my opinions alone.

Here are my suggestions on what has helped me improve the quality of my life:

The Body

  • First, let’s address inflammation. When inflamed, we will experience more subluxations or even dislocations, due to that looseness and space created. The pain caused by your bones shifting just millimeters is indescribable. Here are a few tips to learn how to reduce that problem:
    • Addressing food sensitivities has proven to be a lifeline for me. We tend to be very reactive, so having a blood test to identify the good foods you are eating that may be causing inflammation can drastically change the frequency of your subluxations. I use the MRT Food Sensitivity testing done, ordered by my dietician. It is heartbreaking to get the results and then be expected to eliminate foods you enjoy for weeks or even months. But when I adhere to this process, I feel so much better, with a clearer mind and body that calms down as a result of not slipping out of position constantly. A food reaction takes about 48 hours to stop in your body, so try to be patient and know you will feel better when the identified food item is out of your system. Note that you will want to consider retaking this test throughout your life, as our body chemistries and food sensitivities may change over time.
    • Addressing drug reactions also reduces inflammation. Unfortunately, EDSers tend to be very reactive to medications. Many of us have reacted to, instead of being helped by, medications prescribed. A simple DNA drug sensitivity test can determine, for the remainder of your life, what is safe to use or not. Imagine not only eliminating reactions but also feeling better?
  • Now let’s understand the need for both overall strengthening and the strengthening of specific muscles . An individual living with EDS must deal with ineffective ligaments and tendons due to the collagen defect we are born with. Currently, there is not yet a cure to correct this, so we need to be diligent in learning how to strengthen the muscles that are holding the body frame in place. Our poor muscles are on overload taking on not only their job but also taking on the function of the tendons and ligaments that are defective.
  • The good news is strengthening properly does help! In fact, my manual physical therapist, Kevin Muldowney, has his book on the market designed to be used by you and your manual physical therapist. You can purchase the book on Amazon. It becomes a daily effort to keep strong, but again, it is worth the time and effort.
  • It is important to understand that if you are not able to progress with the above protocol, then there may be needing to surgically correct the physical issues created by the impact of EDS symptoms on your body.  Have a neurosurgeon keep an eye on three structural issues that one might be facing: tethered cord, Chiari I malformation and craniocervical instability (instability of the neck/head), if you have had issues in those areas.
  • In addition, staying physically active is so important, despite the limitations that are faced. I can no longer move my neck and use my arms for swimming, but I can get lowered into the pool and kick on my back and use a snorkel to kick on my stomach. It makes me feel as normal as possible when I return to that pool. On the opposite days, I ride a stationary bike. For me, physical activity often has a beneficial impact on specific muscles, but it also has positive effects spiritually. When exercising, I feel closer to normal and thus more hopeful about my future.
  • Also, consider trying the supplement regime called the Cusack Protocol to help strengthen your collagen. I noticed a huge difference after about four months on the supplements. This was developed by a woman who is also dealing with EDS, along with her daughters. She worked with doctors and scientists to find out what we miss daily from our bodies for better health and strength. I noticed positive changes in a few months after introducing each supplement and was thrilled to have no reactions to any of them.
  • Addressing low blood pressure is also vital. Many of us face very low blood pressure to the point of passing out, many times without warning. My life turned around when just adding extra salt wasn’t enough and was prescribed Midodrine HCL 7.5 MG. By taking that three times a day, I can be safe with the properly elevated blood pressure and not live with the fear of passing out!
  • Getting good quality sleep is vitally important to relieving pain and improving quality of life. For me, medical cannabis oil has been hugely helpful in promoting restful, consistent sleep despite pain.

The Mind

Living with pain and disability can make you feel helpless and frustrated. To feel part of life, I still need a purpose—in conjunction with a desire to still be here and fighting. At times, there have been so many things wrong that this has been a struggle to accomplish.  There have been time periods when, because of my health issues, I was literally preparing for my death.

Today, I am facing the future realizing I can now live a better life again with more confidence and hope for continued better quality of life in the future. For example, for years, I was not able to read a novel for it would bring on instant headaches and dizziness. But since having a neck fusion, I can read for considerable periods of time. What a gift!

I attempt to keep my mind as sharp as possible doing the following:

  • Reading the paper daily
  • I end the reading with attempting sudoku and jumble word puzzles
  • As mentioned before, I stay on top of my pain, which allows me many restorative nights of sleep (and sleep is obviously vital to keeping your mind sharp and calm)
  • I try to surround myself with positive circumstances and people. It doesn’t take much to drag me down by other’s complaints and anger. I am happy to try to listen and try to help them, but I must know my limits, too.
  • I try to keep active and involved, whether testifying about cannabis or my condition, volunteering for the U.S. Pain Foundation, volunteering here in RI for the Rhode Island Patient Advocacy Group, along with being appointed for both the Rhode Island Oversight Committee to keep an eye on our medical cannabis compassion centers, and the Adaptive Telephone Equipment Loan (ATEL) Program. Also, my husband and I are in frequent contact with others struggling and help to pass whatever we have learned forward.
  • I discovered, soon after the diagnosis, that for me, writing is very cathartic. I started by writing poetry to vent my feelings and that led to publishing two books. I spent years writing for Pain News Network and now am a staff writer for the National Pain Report. I love not only passing knowledge forward, but also find it helps me to feel value and a sense of purpose.
  • Finding my voice has been so helpful. I used to be quite shy. Now I can talk in front of a large group sharing what I have become so passionate about – how to live with EDS, chronic pain and medicating safely with cannabis oil.

The Spirit

Every day, I attempt to find a peaceful moment where I take the time and go through in my mind all that I am grateful for. Although there have been years of losses, I am still here and have a life to live, no matter how challenging. This is the only life I get to live, and I have discovered feeding the soul is priceless. Each morning, after getting the dogs outside and putting the coffee on, I go back to the bedroom alone, put my hand over my heart, look out onto our farm window and run through all that I am so lucky to have in my life: my family, life itself, a new me with a fused neck, a new gut that is now back to functioning after two years of being totally shut down, enough money to pay our bills, and all the opportunities that are brought my way.

I think you will generally find that those of us who have been on the edge of death are more able to recognize and appreciate any good that comes our way. Nothing is taken for granted. Try to find the positive in the life you are facing, no matter how many losses you must deal with. It will help you to live life and feel happier.

In the next part of this three-part series, I will go over some general safety tips for reducing subluxations and pain when living with EDS. [Click to read part two and part three.]

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.