Living with Ehlers-Danlos? Tips to help improve Your Quality of Life

Living with Ehlers-Danlos? Tips to help improve Your Quality of Life

By Ellen Lenox Smith.

Ehlers-Danlos Syndrome (EDS) is a condition that causes one to be born with defective connective tissue, the “glue” which holds the body together. Currently, there is still no permanent cure to this problem, so living life with this condition means learning to live with chronic pain, subluxations and dislocations all resulting in major changes in your life. Through the years, I have learned that there are simple things one can do to live life with EDS more safely and hopefully with improved quality of life.

EDS patients face the unknown daily. Those suffering the multiple and painful symptoms EDS produces often must confront the judgment from friends and even family, along with the social isolation, confusion and lack of consistent knowledgeable medical support and a body that often must confront symptoms of multiple medical issues simultaneously.  Most EDS patients face issues of co-morbidity adding further complications to conditions with few available proven and effective treatments.  All I ever wanted, when first diagnosed, was for someone to reach a hand out and guide me. But, that hand was not there. So, instead, I have spent the past fourteen 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.

With that in mind, I would like to share what I have learned and has worked for me, in hopes that your journey will confront fewer potholes and bumps in the road as you work with this condition, which the medical profession often is at a loss to provide effective treatments for. I hope the following suggestions will prove helpful in supporting EDS patients in a journey to a life with less pain and improved overall quality of life:

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.

Feel free to use our list of compatible geneticists.

Ellen Smith and friend

2.)Take Time to Grieve It’s okay and necessary to allow yourself to mourn the loss of your past life.  Life will move on, but it will never be exactly as you have known it. As you go through that process, remember you need to reach the goal of moving on, live with hope and try to be proactive.

3.) Address pain control – You will need to accept that you can not take this journey on your own. You need to address your pain in order to have the opportunity to attempt to regain some sense of normalcy in life again. You might be like many of us and have trouble metabolizing certain medications.

Many EDS patients respond beautifully to medical cannabis. It can be taken in a simple dose of oil at night, that not only allows you to sleep but also provides pain relief to the body well into the next day.

Here is the recipe I use to make the oil.

4.) Be evaluated and followed by an EDS friendly neurologist for common EDS conditions such as tethered cord, Chiari I Malformation, and instability of the neck. Since this is very important for your safety, every EDS’er should have this evaluation done and be sure to have the neurologist monitor you.

Many of us need to have the tethered cord released to address issues with the bladder, kidneys, pressure in the chest, and issues with legs. If needed, have the tethered cord surgery as soon as possible for not only will you feel much better but it will prevent permanent damage. Also, any physical therapy you undergo after surgery will prove to now progress much more effectively and quickly.

Instability of the neck will cause havoc with your body. It is worth trying strengthening, but if this does not resolve the issue, then consider the surgery. Having my neck fused has been a lifeline for me. It has tremendously reduced brain fog, imbalance, headaches and constant painful neck subluxations.

Chiari I Malformation must also be addressed. Severe headaches are not a positive way to live, so please have yourself examined by a neurologist that understands this condition.

Any or all of these may be an issue for you in time, but please understand that correcting them, when the time is right, will make the difference in your efforts to progress.

Feel free to refer to the list of neurologists on our list.

5.) Find a good manual sacral physical therapist – “Living Life to the Fullest With Ehlers-Danlos Syndrome” is a book written by my manual sacral physical therapist, Kevin Muldowney. He learned by working with many EDS patients at his clinic, that there are safe ways to strengthen our muscles. I have been through the protocols highlighted in his book and have found that they work for me. You’ll need to remain committed to the daily workout, but believe me, I love being proactive and thus, I  so appreciate the progress which is so evident to me – like having the scarum hold! This is your opportunity to take better control of your life by learning, through the guidance of this book and along  with a manual sacral physical therapist, how to successfully help strengthen your muscles which have the additional task of holding your body together.

6.) Develop a network of doctors that understand EDS or are willing to 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 given current treatment options complete recovery is not an option. 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. Many of us develop POTS or dysautonomia and eventually need the care of  a cardiologist to help us take the compatible medication to keep our BP elevated, to prevent passing out.

8.) Determine food allergies – A simple food sensitivity blood test can offer tremendous assistance in reducing reactions and inflammation. By getting these foods identified and eliminating them in your diet, you will in turn decrease inflammation in the body the helps to cause your subluxations. It can initially be heartbreaking to learn a wonderful food you love is on your list, but many times, if you avoid that item for three months, you may be able to successfully reintroduced it to the body.  As difficult as it is eliminating foods, you will find a huge difference in how much better you will feel. There are numerous tests to use but the one I happen to use is called MRT Food Sensitivity Testing.

9.) Determine Drug sensitivities – I wish that years ago I had a clue that there was testing available to see why I had such negative reactions to many medications since birth. A simple DNA drug sensitivity test can help determine what is a safe drug  you should be able to put into your body. If you keep taking medication or eating foods that are not compatible with your body chemistry then you are increasing the inflammation in your system. More inflammation means more pain due to the increase of subluxations! I happened to use Genelex DNA Sensitivity testing. You then have these results to use for the rest of your life – anytime you need to add a new medication, you can determine from your testing whether it will be compatible or not. I contact the testing company to have them check my results to be sure I am safe adding anything new.

10.) Cusack Protocol – I had read about this supplemental protocol. I had no intent to add anything else to have to take but then heard more and more EDS’ers rave about the results. So a year ago, I bit the bullet and started introducing one item at a time to see if I could feel positive results eliminate too. To my amazement, I believe my joints are holding better in place, I am strengthening more successfully and feeling a nice improvement in my health and overall attitude. I found it took a few months for these results to begin to kick in. I have always believed that if something might help me and not hurt me, it was worth a try. This protocol is staying on my to do list and I would highly encourage you to consider trying to add these supplements to your life. Although I am not able to drive, I can order all I need on Amazon!

http://arthritis.talksmedicine.com/welcome-new-members-to-view-the-cusack-protocol-chart-select-the-pinned-post-379602]

11.) Exercise Safely – When you live with chronic pain, you get emotionally and physically worn down and sometimes feel that you have no energy to exercise. However, living with EDS makes it all the more important to do just that. We need to keep our muscles strong and be sure to get a cardio workout to keep our bodies in the best shape as possible. Along with following my daily exercises following the Muldowney protocol, I also add either walking, when the body allows, a stationary bike or have myself hoyeried into the pool. I can’t do stairs presently so this gets me in and out of the water safely and then I kick on my back and/or use a snorkel and kick on my stomach. I had been a master swimmer and didn’t want to give up exercising in the water, my love, despite no longer being able to use my arms or neck with swimming. There are frequent times I have to stop or back up a workout due to subluxations that have had to get corrected and might need time to reduce inflammation before returning to my routine.

12.) Try to not get Isolated – I have found, especially when recovering from surgeries, my contacts in life become very limited. And, due to living with chronic pain and continual issues that arise, it is hard for others to understand that we still need friends. However, many of us have experienced our friendships diminishing due to either being judged that we look fine or just not being able to keep up with activities with our friends. So we have to look for new ways to stay connected and not feel isolated. So, see if you can attempt to locate a local support group, use an online support group or reach out to others that are also trying to learn to cope with chronic issues. Simple acts like visiting a rehab center or nursing home and reaching out to others also struggling helps to put your life into a better perspective.

13.) Candida tendency – We tend to be more sensitivity to candida, the yeast we all have naturally in our bodies. Sugars and carbs feed this condition and cause it to get out of control causing brain fog, fatigue, and weight gain, despite almost starving yourself. This was one of the fist symptoms I developed early on in life. For me, it takes a round of  Nystatin to rid my body of the issue and then lightening up on the triggers that feed it. I usually feel relief within twenty-four hours when I take the medication to kill the yeast.

14.) Taking care of your Gut – Many of us have issues with stomach aches and bowels that can literally shut down. Some deal with gastroparesis and others like me with motility issues. Many of the stomach issues are improved by addressing both the food and drug sensitivities. I had no movement of my gut for two years after my first neck surgery. The interesting thing is when I came down with congestion from a cold this past Fall, I turned to alfalfa tablets, per a homeopathic doctor,  to dry up the congestion since I am unable to metabolize decongestants. Strangely and thrillingly, I suddenly found the gut woke up and has been eliminating daily. I have stayed on the daily use of the alfala to keep this process in action and am thrilled!

15.) Control Low Blood Pressure – Many of us live with lower blood pressure than normal. There are a few things that I have found to be very helpful for this:

  1. Drink plenty of water.
  2. Elevate your bed from the bottom of the frame at your head, 30 degrees.
  3. Salt your food – and use the best salt you can get like REAL Salt that includes wonderful minerals too.
  4. Don’t get to the point of passing out and doing damage. If you feel the above is not working, then see your cardiologist to consider adding medication like Midodrine. I find if I stick with my three doses a day, my BP stays at a safe level.

16.) MAST Cell – This is defined as a cell filled with basophil granules, found in numbers in connective tissue and releasing histamine and other substances during inflammatory and allergic reactions. Those that suffer with these reactions often struggle tremendously. Be sure to bring this condition up to your doctors if you feel you are not reacting normally to foods and life around you. I have not had this issue so don’t want to address this incorrectly and encourage you to talk about this if you are reacting abnormally.

17.) Orthopedic issues – If you develop issues with bones subluxing and strengthening seems to not be helping and there is talk of surgery, please be sure they use cadaver tendons to hold the bones in position, not yours! Remember your ligaments and tendons are not able to do their job properly due to this condition. And also consider using arch supports since many of us deal with flat feet.

18.) Prolotherapy/Vector Machine –

I always have turned to prolotherapy, also know as Non-Surgical Ligament and Tendon Reconstruction and Regenerative Joint Injection, is a recognized orthopedic procedure that stimulates the body’s healing processes to strengthen and repair injured and painful joints and connective tissue. I try this before making the decision to go for surgery. It is safe and can be effective, depending on the damage to your body. If it doesn’t work, then I move on to the surgery.

The vector therapy system is indicated in the US for the treatment of chronic, intractable pain and for the treatment of post-surgical trauma pain. When I tired one treatment for the first time with the machine a number of years ago, I had to immediately reduce my medication for pain for the treatment had rapidly reduced my pain levels.

19.) Low Dose Naltrexone – Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome.  LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. I again did not take the original suggestion to try this medication just because I hated to have to pay for one more thing along with adding to my list of medications. But after hearing the positive results of others with EDS trying this, I broke down and am thrilled I did. I feel that is helps me to maintain a more positive attitude, more pain reduction and functioning in general. Another keeper for me!

20.) General Safe Movement of Body –

  • A simple thing to always remember to prevent up-slips, is to never sit in a chair or in the car and reach down, leaning to your side, to pick something up. That will easily slip you out of position. Either sift your body to the direction you need to pick up something and then lean forward to get out of the chair and bend your knees to bend down.
  • Always lean down to the ground by bending your knees, not twisting to the side, to help keep your sacrum in position.
  • Try to get into and out of a car that you don’t have to lift your butt up high or sink down into the seat to try holding your sacrum in place.

21.) Lifting Objects – It is helpful to limit your lifting and weight of objects to help prevent subluxations of your arms and ribs. Try to use a fanny pack to carry items instead of putting a shoulder bag on or carrying something in your hands pulling your arms downward. If you can possibly limit lifting no more than five pounds, it is safer for your body. You don’t want to pull and stretch those ligaments and tendons already compromised.

22.) Pillow – Many deal with issues with the neck. The Therapeutica pillow keeps the head in position during sleep to prevent the subluxations that can occur with innocent movement during sleeping.

Remember, each EDS person will have a very different journey from others  despite having the exact same diagnosis.  Some will be able to cope and never have to face surgical repairs and others will be facing one after another. We are not going to have the same path to follow but many of these suggestions can help us all  to live more safely and with some control.

Find a local EDS support group and learn as much as you can as to how to live more safely with this condition.  Work hard to find hope and joy in your life despite your sorrow and pain from this condition, for this is the only life you get to live. And remember, we all need to consider passing forward anything we find working to see if it might help the next person’s journey to not be as confusing, lonely and difficult as yours. I hope you will post other helpful suggestions on this sight to share with others.

May life be kind to you!

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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Alan Edwards

Thanks for the huge amount of information. In my vicinity, any wild plant is illegal for any therapeutic use. Being in pain, unable to sleep, and the weakness of cerebral palsy has left me in dire consequence. I am at 23 mme now but was told in a year or so it would end. The type and quality of medical professionals and care you speak of are unavailable to me and I am alone. To Steve below I have no answer. Pray and find a friend and advocate, call social worker or move. Sounds like we are both in emergency situations. We are in a historic artificial crisis never before seen in U.S. medical care history. On so many levels, the medical system is failing for the very sick. Healthcare workers in general are becoming increasingly wealthy and we who should receive palliative care are becoming increasingly poor or broke. I could not afford cannabis if it was legal here. Again, great article. Reality is extremely different in Virginia if one has complex intractable pain disease.

Karrie Johnson

Thank you SOOO much for this article. Diagnosed w/ Chiari, tethered cord, Syringomyelia, hydrocephalus, in 2010, fibromyalgia in 2012, and just recently diagnosed with EDS and possibly cervical instability and POTS. My 2 teen daughters are diagnosed with Chiari and EDS also. I’ve had 17 surgeries since my 1st diagnosis and have been on pain meds since. I hate taking all these prescriptions daily. I use marijuana also but by smoking it. Ive never been a “smoker” at all, so I really do hate smoking it, but I find great relief in it. I just don’t know where to begin when it comes to the oil, so your article is greatly appreciated and helps me to get a good start with learning about it. All of my diagnosis’ have been life altering, and now with my girls being diagnosed I need to learn as much as I can so they can lead a fairly healthy happy life.
Thanks again, and I wish you all the best!!

Karrie

Steven

Hi all, thank you so much for your article and I’m glad that it sounds like you have a good system in place. I know now since the opiate tapering is it given it’s easy to overlook it. Am I the only one that just simply can’t do what they ask 90 m m e? Does anyone have any General items like above list that at least help? Nearly bedridden.