I was diagnosed with Ehlers-Danlos Syndrome (EDS), a condition you are born with, fourteen years ago at the age of fifty-four. The physical symptoms created by EDS mimic the symptoms associated with fibromyalgia. As a result, many of the individuals suffering from EDS have, like me, initially been diagnosed with the much more commonly diagnosed condition of Fibro. I can attest to this dynamic for over the past decade, I have had contact with many EDS patients sharing similar stories. I have also had contact with many medical professionals, whom, after becoming familiar with EDS and all its many symptomatic manifestations, have concluded that many of their fibro patients were afflicted with EDS. If you have been diagnosed with Fibro and are suffering some symptoms which seem to be extreme or perhaps unconnected to what most Fibro patients experience, then please considering taking the time to learn about EDS.
How could such a mistake be made?
The problem is EDS is not commonly diagnosed in a timely manner for so many of us. Very few doctors are taught much about EDS in medical school and thus are not equipped to make an accurate diagnosis relative to those suffering from EDS. Therefore, they don’t properly put the pieces of the puzzle together to realize the correct diagnosis. The confusing thing for a doctor is that we present with the same positive pressure points checked to help determine fibro. This confusion and misdiagnosis happen too frequently, so we need to educate ourselves to help spread the word to others in case they, too, are being treated for the wrong condition.
What make EDS different from fibromyalgia?
One with this condition has deformed collagen, the glue of the body. Therefore, ligaments and tendons do not have the strength to function effectively to work correctly and muscles must work on overload to compensate for their lack of effectiveness. This causes looseness in the joints that allows for bones to shift. One lives with many subluxations (partial dislocations) and even full dislocations. A simple twist, turn, hug can all cause things to shift. Unfortunately, this shifting of the structure creates pain that one must learn how to live with. Remember, it IS NOT a Systemic Autoimmune Disorder or a Collagen Vascular Disorder.
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How can you get the correct diagnosis to rule in or out, EDS?
To correctly diagnose Ehlers-Danlos, you need to get to a geneticist who is familiar with this condition. Diagnosis. Extremely loose joints, fragile or stretchy skin, and a family history of Ehlers–Danlos syndrome are often enough to make a diagnosis. Genetic tests on a sample of your blood can confirm the diagnosis in some cases and help rule out other problems.
Does it make a big difference to your health to treat fibro when it is EDS?
Yes! There are specific issues to keep an eye out for. A neurosurgeon looks for three possible issues with EDS: Tethered Cord, Instability of the Neck and Chiari I Malformation. Some people have all issues and others get lucky and have one or even none. Each person has a different journey with this condition. If these issues cannot be resolved with strengthening, then it may be necessary to have surgical correction to be able to improve the quality of life. Remember if you have been diagnosed with EDS, be sure to find a neurosurgeon that has been working with EDS. If you do not go to the educated neurosurgeon for surgical correction, you may end up having to have corrective surgery.
Here is a link to a list of EDS friendly doctors to consider.
And if you have been walking around with the wrong diagnosis, what do you do next to begin to improve the quality of your life?
It is so important that the diagnosis is done in a timely manner if you instead have EDS, for there are actions to take to begin the long journey of learning to live with better quality of life.
#1 Get diagnosed by the geneticist that is familiar with EDS. Too many times one goes to any geneticists and comes home dejected being told they are just hypermobile. But then when they get to the one more aware of the condition, they can get the proper diagnosis. If you feel they are not correct, try another geneticist and consider using this list to find your match:
#2 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.
#3 Find a good manual PT to help put those subluxations/dislocations in place and then learn how to strengthen the muscles that are on overload doing the job of the ligaments, tendons and the muscles. This is the manual written by my PT who sees over 100 EDS patients a week. It teaches one on how to help you and should be used by your manual physical therapist. It can be found on Amazon:
#4 The more you can control the inflammation in the body, since we are prone to systemic reactions, the less subluxations you will experience. We tend to be both very drug reactive and have numerous food sensitivities. There are DNA drug sensitivity tests, like Genelx, that will determine what you can metabolize to stop all those unpleasant reactions to medications. Also, there a blood tests to determine which foods are the culprit, like the MRT test that a dietician can order for you. Addressing both these issues can make life much more comfortable!
#5 EDS is a painful lifelong condition. Therefore, to improve quality of life, it is important to address sleep and pain. Some, like me, can achieve this with the use of cannabis. I use a simple tsp of night Indica oil to sleep and address the pain. I rarely need to take any medication that next day since it keeps the body in a calmer state. If an opiate is your match, then don’t deny yourself this relief, providing you are still able to get your script ordered and filled. This is a very painful condition and it is not a time to try to be a hero and ignore the pain. You will enjoy your life more if you can try to get on top of the pain, no matter what medication you find compatible with your unique body chemistry! Some are lucky enough to be able to address pain and sleep with other methods like meditation but remember we all have very different journeys with this condition.
#6 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.
#7 Although this condition is very difficult to cope with, remember when you can manage your pain and improve your overall health, you may be able to improve the quality of your life and infuse your life with purpose and meaning so critical to your physical and mental health. Many of us must reinvent ourselves and learn to accept the new you. It is not easy to have to let go of things we could do that were special for us. Allow yourself to mourn those losses and then begin to pick up the pieces and find new direction!
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/