Ehlers-Danlos Syndrome – How Could I Be Improving?

Ehlers-Danlos Syndrome – How Could I Be Improving?

By Ellen Lenox Smith.

I wake up each day and truly bask in the wonder and joy of my recent and amazing improvement living with Ehlers-Danlos Syndrome. Those closest to me, including family and friends, have also had an emotional reaction like my experience, they are shocked and amazed at the changes taking place.  But, let there be no doubt that my current success required tremendous self-discipline, patience and sacrifice.

I am guessing you are assuming by stating this, that I have not had as tough of a journey as you. However, perhaps that is not the case. I have now endured twenty-four surgeries, four years living in a wheelchair, numerous episodes of becoming catatonic when the sternum and trachea have shifted and caused serious breathing episodes, food sensitivities, drug reactions, along with a gut that shut down totally for two years after the first of two neck fusions. I was forced to give up a teaching career which I loved and found totally fulfilling in 2007, after finally getting the correct diagnosis at the age of fifty-four. I lost the use of my arms and neck to swim, after being a former swim coach and master swimmer. I lost the capacity to read a book due to dizziness and nausea which reading would bring on. The list goes on and on, but each of us has a laundry list of stories we could share in our efforts to cope with the incredibly debilitating and varied symptoms brought on by EDS, so no need to keep listing more.

Now, at the age of sixty-eight, I am guessing you are wondering how I could possibly say I am improving after listing the above. I want to share what I believe I have learned is in my control just in case these suggestions, that seem to be working for me, can help you too!  My experience has taught me that while addressing physical symptoms is critical long term success in dealing with EDS, it requires a holistic approach to include not only the body but the mind and spirit, which are intimately related. I have found successful treatment requires each of these elements to be given attention.

The Body

First, let’s address inflammation. When inflamed, we will experience more subluxations or even dislocations, due to that looseness created. The pain created 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 have 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 trust me, 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. A food reaction takes about 48 hours to calm down 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 addressing this test throughout your life for when you feel changes recurring, you might have new food items to consider eliminating.
  • Addressing Drug reactions also reduces inflammation. Unfortunately, EDSers tend to be very reactive to medications. Many of us have reacted to, instead of gaining help, from 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 to for both overall strengthening and the strengthening of specific muscles (strengthening.) An individual living with EDS must deal with ineffective ligaments and tendons due to our 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 Instability of the Neck, if you have having issues in those areas.

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 “Hoyered” into the pool and kick on my back and use a snorkel and 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 with strengthen your collagen. I am 68 years old, have had 24 surgeries and have 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.

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 BP and not live with the fear of passing out!

The Mind

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 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 a continued better quality of a future.  For years, I was not able to read a novel for it would bring on instant headaches and dizziness. But since the neck fusions, 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 the Sudoku and Jumble words
  • I stay on top of my pain that allows me many restorative nights of sleep
  • 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 US Pain Foundation, volunteer here in RI for the Rhode Island Patient Advocacy Group, along with being appointed for both the Oversight Committee to keep an eye on our compassion centers, and 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, is very cathartic. I started by writing poetry to vent my lost feelings and that led to publishing two books. I spent years writing for Pain News Network and now am staff writer for National Pain Report. I love not only passing knowledge forward, but also find it helps me to feel value and a sense of purpose.
  • And 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 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 so I have discovered feeding the soul is priceless. Each morning, after getting the dogs outside and putting the coffee on, I then 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 the opportunities that are brought my way. I think you will generally find those of us that have been on the edge of death 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.

So, yes, after years of horrible, frightening struggles, loss of my career I adored, isolation and loneliness brought on by my 24 surgeries and recoveries, loss of friends unable to find the time to keep up with someone who couldn’t be that person they first knew, people judging EDS and the reality of this condition, to name a few, I am today on a new path. I don’t want to make those of you struggling, to read this and feel angry and jealous but instead understand that I am writing it in hopes this will give you hope. If through all this daily work I can improve at 68, then I hope that gives you some reason to not give up and keep searching for what is best for you to keep going and hopefully by your actions and commitment create a better quality.

May Life Be Kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column 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 National Pain Report.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Authored by: Ellen Lenox Smith

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Becky

Ellen, thank you to bring awareness to EDS. My daughter is disabled from EDS but then on top of that add Lyme and co-infections that went undiagnosed for years . Add to that a fluroquinolone damage. Her pain is off the charts. Due to Medicare and CDC she cannot get needed meds to by get pain bone that is below an 8. It is just me to help her and I work full time. We need help managing pain to a 6 so she can try to do what you suggest. Sad when an EDS patient is denied meds that did work but were taken away. Lyme on top of EDS is a horrible life. We tried Cusack, tried the food. Thank you may you improve daily. Gentle hugs

Sarah

One if your best yet Ellen! Thanks!, on this Thanksgiving Day to read of your success with the Cusack protocol, me too!… and with very promising results thus far! Congrats & Stay strong, your voice is so important!

Ellen Lenox Smith

Geoffrey Nielson, feel free to email me and let’s see what we can connect you within your area – ellen@uspainfoundation.org

Donna sullivan

Ellen you were one of the first people we ever met who had EDS and you have been our guiding star ever since. So grateful and blessed to know you and to have you in our life. To see this article this am, so full of hope is making me so happy for you and I can’t wait to share it with my daughter. I’m happy to Ae seeing improvements (as we have witnessed all of your hell) and thank you for these suggestions and all that you do to help others living this EDS life. Love you and hope you and your beautiful family have an awesome Thanksgiving. ❤️

BethAnn

Ellen Im so happy for you. I feel blessed as well. Two years ago I would have never thought I would be able to live a somewhat normal life. I work on my mind, body and spirituality evrry day. I still rely on many pain meds but I can now function while on them. My Dr helped me with every aspect of my personal self and developed a plan just for me. He is as pleased as I am. God bless you Ellen

Cakes

Although I do not suffer from Ehlers-Danlos Syndrom; I have other problems that cause a great deal of pain.
I believe your article touches on things that can help most all of us; including healthy people who want to stay healthy!
May your journey continue to get easier and may you find more things daily to be thankful for!
God Bless You and your husband for your awsome work!

Geoffrey Nielson

Hello, geographically I now live in Arkansas. Can you lead me to any known cannabis advocacy groups in NorthEast Arkansas?
Multi diagnosed and multiple years since a spinal cord injury, (work comp), 3 failed surgeries, 12 strokes, 2 heart attacks, 1 brain aneurysm, fibro, peripheral nerve damage, sciatica, anklylosing spondilolothesis, insomnia food allergys, drug allergies and extreme pain in both feet.
Reliance on God and AA to keep going.
The cannabis oils I have tried cleary show that I would have had spent limited income better on the price of castor oil.
Living from faith instead of fear. Active in changing me to be better each new day.
Exhausted today. I have to push myself through each day. Approaching 60 and look 90. Hmmm.
And each day has been a gift.
I seek and receive what I ask and work for when others can be helped before my own needs.
Hopeful in Arkansas,
Geoffrey Nielson

Rakel

So true Ellen I have never seen the struggle with pain and EDS and the need for self management expressed so well. Feeding the soul and the spirit from whatever resources work for you( for me being in water and in beautiful nature) is so important as the best pain doctors know: pain and it’s associated losses murder the soul.