Ellen Lenox Smith

Living life with Ehlers-Danlos syndrome (EDS) is often no picnic, but it is the life we live. However, do you wish you could just hand this condition off to a volunteer who would take over the challenges it presents? Clearly, no one would probably like to take on this assignment, but the thought is amusing. Living with EDS means we were born with defective collagen. Therefore, our ligaments and tendons do not work “normally.” Due to this, much of our body is being held together by our muscles. Our muscles may go on overload because they attempt to take on the duty of the muscles, tendons, and ligaments. So those muscles can end up spasming and may easily cause our bones to subluxate or even dislocate. Although we are only referring to millimeters of subluxation, this movement of our bones can be painful. If you have Ehlers-Danlos syndrome, you may spend your life in “caution mode” attempting to not cause any shifting of your joints. As you age, your ability to be spontaneous, adventurous, and active may disappear. You may attempt to avoid car jolts and accidents, being hugged, excess bending, and twisting your body. You may try to keep your body safe. You may also work to strengthen your muscles to give them every opportunity to take on this “triple duty.” But then, something may happen in a split second, and you may travel backwards despite the success for which you have worked so hard. For me, a person unexpectedly joining my swim lane, doing a sloppy backstroke, and ramming into my neck caused about a month of subluxation of my shoulders and ribs. My neighbor’s new dog rammed into my knee — causing my entire body to jolt out of position. Yet another time, a box fell out of the truck in front of us on the highway, and my husband had no choice but to hit it since shifting to the other lanes would have meant hitting a car. This caused my neck to jolt abruptly, which in turn caused weeks of neck subluxations. Despite many manual physical therapy appointments, the shifting of my vertebrate continued to not hold even though the vertebrate was being returned into the correct position in physical therapy. The inflammation from the accident took weeks to calm down and recede — so the healing process was slow. So why is it that my husband was in that same car and had no lingering problems, but one simple event like this caused me a month of discouragement and health challenges? Those of us living with EDS may have inflammation from the foods and medications we aren’t able to metabolize, so an accident can add to this and cause a longer healing process. What can you do to try to help this frustration we must have to learn to cope with? Try to eliminate as much of the inflammation you already live with by identifying the foods and medications you may not be metabolizing correctly. There are tests to identify both food and medications. Try hard to move your body even if you may feel tired and frustrated. Learn how to properly strengthen your muscles. Strong muscles can help calm spasms and reduce or eliminate subluxations. Try to keep your spirits up after you mourn the added pain you are encountering due to that split-second event that threw you backward. Remember that you are living in a body that may take longer to return to its physical baseline. I know all this may be easy to say and hard to do. I feel like I am drowning emotionally each time I experience another setback. I ask “Why me?” I feel sorry for myself. I fight feeling sad, discouraged, and angry for more limitations on my body. But eventually, I remind myself to try to be patient as I wait for the body to settle down. It can be hard work to try to release negative emotions and to work with a more positive attitude, but I can do it.

There is nothing sweeter than bumping into an old friend and embracing them, but with Ehlers-Danlos syndrome (EDS), this type of love can have unintended, painful consequences. If you know someone who has EDS, then please take a moment to understand why hugging can hurt. This does not mean you cannot demonstrate affection to those who live with EDS — it just means that you must be creative in your approach to showing love. After all, the worst thing you can do is to not express your feelings to an individual who’s in need of any emotional gesture you have to offer. EDS is a connective tissue disorder, which means that those who have it have defective collagen — the “glue” that holds the body together. This means the person has ligaments and tendons that may not fully stay together, so their bones can slip out of position with simple movements like hugging and touching. EDS patients’ muscles are thus required to take over the job of the ligaments and tendons — all while still acting as muscles. Therefore a person with Ehlers-Danlos syndrome may find that their muscles are on overload. When someone puts pressure on the body, bones can then shift out of position. The bones may move millimeters, but the result may be painful. Thus, the briefest physical contact may result in days of extra pain and a significant setback in an individual’s therapeutic treatment program. As a person living with EDS, I will share a few personal experiences in an attempt to provide you with insight into how vulnerable my body is. Just last night, we had dinner with some dear friends who are aware of my condition and the journey we have been on as we deal with my 26 surgeries. However, at the end of the evening, as we were in the process of saying goodbye, both of my friends embraced me, and one even put their hands around my now-fused neck to initiate a close embrace. I went home but had trouble staying awake for the evening and had a lousy night’s sleep. That simple gesture caused my neck to slip, my shoulder to subluxate in partial dislocation, and my sternum to slip down onto my chest, causing difficulty with breathing. The next day, I did not feel well, so I looked forward to getting to manual physical therapy to have them reposition many of the bones that caused me pain and discomfort. My husband and I try to keep me protected, but so much social action, particularly with friends, is spontaneous and rapid enough that I don’t always catch it in time. Another time recently, I was sharing how much better I was feeling, and at the end of the conversation, the person I was talking with was so happy that they wrapped their arms around me and pulled me in for a celebrational hug. That compassionate action again caused another poor night of sleep, my chest to shift inwards, and many unpleasant physical sensations until manual PT was required to correct it all. Once again, this all happened so quickly that I just didn’t catch it in time to prevent the damage. The hard part is that these expressions of compassion and caring are normal in relationships, but if someone happens to have EDS, the results are not always positive. I have run this over in my mind each time this has happened to me and have had to pay the price, hoping to come up with a plan to try to prevent this from happening again. The underlying problem is that the last thing in the world many of us want is to give our friends the sense that we are rejecting their sincere gestures of affection. For those living with EDS: If you can catch a hug in time, mention that you just can’t be hugged tightly (or at all) due to the possibility of subluxations. If the hug happens too quickly, consider crossing your arms over your body to protect yourself. Consider extending your hand out to shake instead of leaning in for a hug, then taking your other hand to place over theirs too to show extra care. Consider using how hugs affect you as a teaching opportunity for someone who cares about you and would never want to hurt you. Consider wearing a brace to protect a vulnerable area. If you are going to a planned social event, develop a plan to address this need to protect yourself and not offend others. For those approaching a friend with EDS: Consider asking first if it is OK to be touched and if so, what would be safe. Consider extending your hands out instead of reaching in for a hug. Consider asking your friend to initiate the movement towards you — whether it be a hug, pat, or handshake — to be sure you are not doing anything to hurt them. Many of us who have Ehlers-Danlos syndrome don’t look like we can’t be hugged. However, if you don’t have EDS, you might be taken aback when you hear about how painful hugs can be. The last thing you want to do is hurt someone, so take this moment to think about how you might safely express friendship, love, and compassion safely toward your friends with Ehlers-Danlos syndrome. Trust me — your consideration will be greatly appreciated!

Living with Ehlers-Danlos syndrome (EDS) can be overwhelming, heartbreaking, and full of so many obstacles. Still, it may be important to believe there is still hope to hold on to. Without hope, how can we continue to persevere and face the journey we are on? If your life with this condition is like mine, there may be times when you wonder how you will continue to find hope. But in learning to cope with this daily battle, I have found that sometimes there is light at the end of the dark long tunnel we often travel through. It took 54 years for me to finally get a proper diagnosis, so that was one long tunnel to walk through. It meant years of being doubted, misdiagnosed, and judged. It also involved reacting to medications and treatments that were not the right ones for me. I was so excited when that light finally came and I received an answer. But no sooner did I come home with the diagnosis than I again entered a long, lonely tunnel. I realized how few knew about this condition and knew how to help me. I was literally told by my rheumatologist that I would be better off turning to the internet since my EDS was too complicated and was not something he could help me with. I felt lost and discouraged, which led me to help “pay it forward” to anyone who might benefit from anything I found helpful. That tunnel of darkness was with me for many years, especially as I learned to navigate the system. I learned to travel towards that light by: 1. Addressing My Symptoms I tried surgical repairs when all my other options had been exhausted. I still attend manual physical therapy to receive help with repositioning subluxations and dislocations and learn how to safely move in my daily life. I addressed my food sensitivities. I also used DNA drug sensitivity testing medications to avoid things that were causing me reactions and inflammation. 2. Advocating for Ehlers-Danlos Syndrome Awareness As an advocate for people with EDS, I wrote two books to share my experiences to try to help others. I spoke out about EDS at hospitals, medical schools, and support meetings. I even joined Zoom presentations, called insurance companies, and spoke on Capitol Hill and with the FDA. My advocacy led me to connect with the U.S. Pain Foundation, and through this, I have shared what has been successful for me in hopes that it might help others. I also listen to others in distress and offer them compassion. 3. Practicing Gratitude I have learned to focus on the good I have in my life. I also try to remember that we all have trials to take on, and my EDS happens to be the one I have to face. There is a saying on my favorite doctor’s wall that grabs me each time I wait for her: When things seem to be falling apart, maybe they are actually coming together. That line jolts me into thinking that in many cases, I have pieced together what was falling apart, and in many cases, I have settled into a new pattern. As you travel through your own dark tunnel with the world on your shoulders, try to keep stepping forward and searching for the light: the people who support you and the things that brighten your day.

So many living with medical conditions do not understand that controlling inflammation in the body can help with your overall well-being. I have literally gone up in weight just from missing the cause of the inflammation. That added weight is just a miserable feeling. My head gets so foggy I can’t think straight, energy levels drop and discouragement seeps in. And for one like me living with Ehlers-Danlos syndrome (EDS), this means creating the perfect storm internally that causes the body to easily sublux or even full dislocations. It has taken many years for me to figure out the reasons this inflammation has been occurring and how to take some control to try to avoid it and maintain the body. And no matter how hard I try, there are still mysterious times that I have to investigate and look back to try to understand what I did wrong again. I never realized that one huge culprit for me that causes inflammation is the nightshade vegetables many of us so enjoy. They include white potatoes (not sweet potatoes), eggplant, tomatoes, and peppers. When I learned about this and stopped them, all the difference in my body was huge to the point that I now refuse to eat them. And yes, it was heartbreaking to stay away from these vegetables I love and were growing and harvesting in our garden, but again the change was dramatic. Another thing to consider is sensitivity to medications can cause inflammation. If this seems to be an issue, then consider having a DNA drug sensitivity test done to identify what medicines are not compatible with you. I remember my mother saying my pediatrician shared that it seemed that my body was allergic to itself. And he was close to right — for my results showed I was not metabolizing Aspirin, Tylenol, any opiates, and so much more. From this point on, I contact the company that did my testing to be sure any new medication that is being suggested is checked against my results, to be sure I am not making things worse by causing inflammation. I have now gone from using no pain medication to being able to metabolize cannabis oil that allows sleep and calm in my body. I had chosen to live with no pain medication before these results, since nothing was working and was only causing inflammation and actually more discomfort with the reaction process. Today, I have peace in the body! Try taking a look at the foods you are eating and find out if they are causing problems. There are blood tests to check for food sensitivities — one example being the MRT food sensitivity test. The results are heartbreaking to discover that foods you love may be causing inflammation. However, once again, eliminating something that is causing a reaction in the body was so beneficial. A return of energy, sleep and clearer thinking became more important to me than eating the identified culprits. Sometimes when you eliminate a targeted food, you can get lucky and be able to return to eating it again. And there might be other ones that no matter how long you avoid, leave you feeling poorly when you try to reintroduce them. Each person is different, so all you can do is go through the process of identifying them, eliminating them and then upon directions of your dietician, try eventually reintroducing them. These issues do make it very difficult to eat with others that have cooked for you or to eat out at a restaurant. People will mean well and will easily share there is no gluten, dairy, soy, nightshade vegetables, etc. and then you come home and feel that negative change happening in your body. I recently had the weight increase for a week with no idea why. Then I realized I had been delivered some black beans that the can was marked “spicy” in small print. Upon reading the ingredients, I discovered that they had tomatoes in it. Just eating a few meals with those beans had such a negative effect for a while in my body. I had missed this and kept eating what was left without a clue. I was the one that had to pay the price. Living with medical conditions can be overwhelming and leave you feeling like your life is out of control. So for me, anything I discover that I can do to return some control back in my life and help improve the quality of my life becomes a gold mine for me. Do I enjoy watching others eat what I need to avoid? No way. But to have some calm and peace return to my body is so worth the sacrifice, for me. Maybe this will be worth it to you too! May life be kind to you.Ellen Lenox SmithUS Pain Foundation, Co-Director for Cannabis Advocacy

So many living with medical conditions do not understand that controlling inflammation in the body can help with your overall well-being. I have literally gone up in weight just from missing the cause of the inflammation. That added weight is just a miserable feeling. My head gets so foggy I can’t think straight, energy levels drop and discouragement seeps in. And for one like me living with Ehlers-Danlos syndrome (EDS), this means creating the perfect storm internally that causes the body to easily sublux or even full dislocations. It has taken many years for me to figure out the reasons this inflammation has been occurring and how to take some control to try to avoid it and maintain the body. And no matter how hard I try, there are still mysterious times that I have to investigate and look back to try to understand what I did wrong again. I never realized that one huge culprit for me that causes inflammation is the nightshade vegetables many of us so enjoy. They include white potatoes (not sweet potatoes), eggplant, tomatoes, and peppers. When I learned about this and stopped them, all the difference in my body was huge to the point that I now refuse to eat them. And yes, it was heartbreaking to stay away from these vegetables I love and were growing and harvesting in our garden, but again the change was dramatic. Another thing to consider is sensitivity to medications can cause inflammation. If this seems to be an issue, then consider having a DNA drug sensitivity test done to identify what medicines are not compatible with you. I remember my mother saying my pediatrician shared that it seemed that my body was allergic to itself. And he was close to right — for my results showed I was not metabolizing Aspirin, Tylenol, any opiates, and so much more. From this point on, I contact the company that did my testing to be sure any new medication that is being suggested is checked against my results, to be sure I am not making things worse by causing inflammation. I have now gone from using no pain medication to being able to metabolize cannabis oil that allows sleep and calm in my body. I had chosen to live with no pain medication before these results, since nothing was working and was only causing inflammation and actually more discomfort with the reaction process. Today, I have peace in the body! Try taking a look at the foods you are eating and find out if they are causing problems. There are blood tests to check for food sensitivities — one example being the MRT food sensitivity test. The results are heartbreaking to discover that foods you love may be causing inflammation. However, once again, eliminating something that is causing a reaction in the body was so beneficial. A return of energy, sleep and clearer thinking became more important to me than eating the identified culprits. Sometimes when you eliminate a targeted food, you can get lucky and be able to return to eating it again. And there might be other ones that no matter how long you avoid, leave you feeling poorly when you try to reintroduce them. Each person is different, so all you can do is go through the process of identifying them, eliminating them and then upon directions of your dietician, try eventually reintroducing them. These issues do make it very difficult to eat with others that have cooked for you or to eat out at a restaurant. People will mean well and will easily share there is no gluten, dairy, soy, nightshade vegetables, etc. and then you come home and feel that negative change happening in your body. I recently had the weight increase for a week with no idea why. Then I realized I had been delivered some black beans that the can was marked “spicy” in small print. Upon reading the ingredients, I discovered that they had tomatoes in it. Just eating a few meals with those beans had such a negative effect for a while in my body. I had missed this and kept eating what was left without a clue. I was the one that had to pay the price. Living with medical conditions can be overwhelming and leave you feeling like your life is out of control. So for me, anything I discover that I can do to return some control back in my life and help improve the quality of my life becomes a gold mine for me. Do I enjoy watching others eat what I need to avoid? No way. But to have some calm and peace return to my body is so worth the sacrifice, for me. Maybe this will be worth it to you too! May life be kind to you.Ellen Lenox SmithUS Pain Foundation, Co-Director for Cannabis Advocacy

So many living with medical conditions do not understand that controlling inflammation in the body can help with your overall well-being. I have literally gone up in weight just from missing the cause of the inflammation. That added weight is just a miserable feeling. My head gets so foggy I can’t think straight, energy levels drop and discouragement seeps in. And for one like me living with Ehlers-Danlos syndrome (EDS), this means creating the perfect storm internally that causes the body to easily sublux or even full dislocations. It has taken many years for me to figure out the reasons this inflammation has been occurring and how to take some control to try to avoid it and maintain the body. And no matter how hard I try, there are still mysterious times that I have to investigate and look back to try to understand what I did wrong again. I never realized that one huge culprit for me that causes inflammation is the nightshade vegetables many of us so enjoy. They include white potatoes (not sweet potatoes), eggplant, tomatoes, and peppers. When I learned about this and stopped them, all the difference in my body was huge to the point that I now refuse to eat them. And yes, it was heartbreaking to stay away from these vegetables I love and were growing and harvesting in our garden, but again the change was dramatic. Another thing to consider is sensitivity to medications can cause inflammation. If this seems to be an issue, then consider having a DNA drug sensitivity test done to identify what medicines are not compatible with you. I remember my mother saying my pediatrician shared that it seemed that my body was allergic to itself. And he was close to right — for my results showed I was not metabolizing Aspirin, Tylenol, any opiates, and so much more. From this point on, I contact the company that did my testing to be sure any new medication that is being suggested is checked against my results, to be sure I am not making things worse by causing inflammation. I have now gone from using no pain medication to being able to metabolize cannabis oil that allows sleep and calm in my body. I had chosen to live with no pain medication before these results, since nothing was working and was only causing inflammation and actually more discomfort with the reaction process. Today, I have peace in the body! Try taking a look at the foods you are eating and find out if they are causing problems. There are blood tests to check for food sensitivities — one example being the MRT food sensitivity test. The results are heartbreaking to discover that foods you love may be causing inflammation. However, once again, eliminating something that is causing a reaction in the body was so beneficial. A return of energy, sleep and clearer thinking became more important to me than eating the identified culprits. Sometimes when you eliminate a targeted food, you can get lucky and be able to return to eating it again. And there might be other ones that no matter how long you avoid, leave you feeling poorly when you try to reintroduce them. Each person is different, so all you can do is go through the process of identifying them, eliminating them and then upon directions of your dietician, try eventually reintroducing them. These issues do make it very difficult to eat with others that have cooked for you or to eat out at a restaurant. People will mean well and will easily share there is no gluten, dairy, soy, nightshade vegetables, etc. and then you come home and feel that negative change happening in your body. I recently had the weight increase for a week with no idea why. Then I realized I had been delivered some black beans that the can was marked “spicy” in small print. Upon reading the ingredients, I discovered that they had tomatoes in it. Just eating a few meals with those beans had such a negative effect for a while in my body. I had missed this and kept eating what was left without a clue. I was the one that had to pay the price. Living with medical conditions can be overwhelming and leave you feeling like your life is out of control. So for me, anything I discover that I can do to return some control back in my life and help improve the quality of my life becomes a gold mine for me. Do I enjoy watching others eat what I need to avoid? No way. But to have some calm and peace return to my body is so worth the sacrifice, for me. Maybe this will be worth it to you too! May life be kind to you.Ellen Lenox SmithUS Pain Foundation, Co-Director for Cannabis Advocacy

Living with Ehlers-Danlos syndrome (EDS) can be overwhelming, heartbreaking, and full of so many obstacles. Still, it may be important to believe there is still hope to hold on to. Without hope, how can we continue to persevere and face the journey we are on? If your life with this condition is like mine, there may be times when you wonder how you will continue to find hope. But in learning to cope with this daily battle, I have found that sometimes there is light at the end of the dark long tunnel we often travel through. It took 54 years for me to finally get a proper diagnosis, so that was one long tunnel to walk through. It meant years of being doubted, misdiagnosed, and judged. It also involved reacting to medications and treatments that were not the right ones for me. I was so excited when that light finally came and I received an answer. But no sooner did I come home with the diagnosis than I again entered a long, lonely tunnel. I realized how few knew about this condition and knew how to help me. I was literally told by my rheumatologist that I would be better off turning to the internet since my EDS was too complicated and was not something he could help me with. I felt lost and discouraged, which led me to help “pay it forward” to anyone who might benefit from anything I found helpful. That tunnel of darkness was with me for many years, especially as I learned to navigate the system. I learned to travel towards that light by: 1. Addressing My Symptoms I tried surgical repairs when all my other options had been exhausted. I still attend manual physical therapy to receive help with repositioning subluxations and dislocations and learn how to safely move in my daily life. I addressed my food sensitivities. I also used DNA drug sensitivity testing medications to avoid things that were causing me reactions and inflammation. 2. Advocating for Ehlers-Danlos Syndrome Awareness As an advocate for people with EDS, I wrote two books to share my experiences to try to help others. I spoke out about EDS at hospitals, medical schools, and support meetings. I even joined Zoom presentations, called insurance companies, and spoke on Capitol Hill and with the FDA. My advocacy led me to connect with the U.S. Pain Foundation, and through this, I have shared what has been successful for me in hopes that it might help others. I also listen to others in distress and offer them compassion. 3. Practicing Gratitude I have learned to focus on the good I have in my life. I also try to remember that we all have trials to take on, and my EDS happens to be the one I have to face. There is a saying on my favorite doctor’s wall that grabs me each time I wait for her: When things seem to be falling apart, maybe they are actually coming together. That line jolts me into thinking that in many cases, I have pieced together what was falling apart, and in many cases, I have settled into a new pattern. As you travel through your own dark tunnel with the world on your shoulders, try to keep stepping forward and searching for the light: the people who support you and the things that brighten your day.

So many living with medical conditions do not understand that controlling inflammation in the body can help with your overall well-being. I have literally gone up in weight just from missing the cause of the inflammation. That added weight is just a miserable feeling. My head gets so foggy I can’t think straight, energy levels drop and discouragement seeps in. And for one like me living with Ehlers-Danlos syndrome (EDS), this means creating the perfect storm internally that causes the body to easily sublux or even full dislocations. It has taken many years for me to figure out the reasons this inflammation has been occurring and how to take some control to try to avoid it and maintain the body. And no matter how hard I try, there are still mysterious times that I have to investigate and look back to try to understand what I did wrong again. I never realized that one huge culprit for me that causes inflammation is the nightshade vegetables many of us so enjoy. They include white potatoes (not sweet potatoes), eggplant, tomatoes, and peppers. When I learned about this and stopped them, all the difference in my body was huge to the point that I now refuse to eat them. And yes, it was heartbreaking to stay away from these vegetables I love and were growing and harvesting in our garden, but again the change was dramatic. Another thing to consider is sensitivity to medications can cause inflammation. If this seems to be an issue, then consider having a DNA drug sensitivity test done to identify what medicines are not compatible with you. I remember my mother saying my pediatrician shared that it seemed that my body was allergic to itself. And he was close to right — for my results showed I was not metabolizing Aspirin, Tylenol, any opiates, and so much more. From this point on, I contact the company that did my testing to be sure any new medication that is being suggested is checked against my results, to be sure I am not making things worse by causing inflammation. I have now gone from using no pain medication to being able to metabolize cannabis oil that allows sleep and calm in my body. I had chosen to live with no pain medication before these results, since nothing was working and was only causing inflammation and actually more discomfort with the reaction process. Today, I have peace in the body! Try taking a look at the foods you are eating and find out if they are causing problems. There are blood tests to check for food sensitivities — one example being the MRT food sensitivity test. The results are heartbreaking to discover that foods you love may be causing inflammation. However, once again, eliminating something that is causing a reaction in the body was so beneficial. A return of energy, sleep and clearer thinking became more important to me than eating the identified culprits. Sometimes when you eliminate a targeted food, you can get lucky and be able to return to eating it again. And there might be other ones that no matter how long you avoid, leave you feeling poorly when you try to reintroduce them. Each person is different, so all you can do is go through the process of identifying them, eliminating them and then upon directions of your dietician, try eventually reintroducing them. These issues do make it very difficult to eat with others that have cooked for you or to eat out at a restaurant. People will mean well and will easily share there is no gluten, dairy, soy, nightshade vegetables, etc. and then you come home and feel that negative change happening in your body. I recently had the weight increase for a week with no idea why. Then I realized I had been delivered some black beans that the can was marked “spicy” in small print. Upon reading the ingredients, I discovered that they had tomatoes in it. Just eating a few meals with those beans had such a negative effect for a while in my body. I had missed this and kept eating what was left without a clue. I was the one that had to pay the price. Living with medical conditions can be overwhelming and leave you feeling like your life is out of control. So for me, anything I discover that I can do to return some control back in my life and help improve the quality of my life becomes a gold mine for me. Do I enjoy watching others eat what I need to avoid? No way. But to have some calm and peace return to my body is so worth the sacrifice, for me. Maybe this will be worth it to you too! May life be kind to you.Ellen Lenox SmithUS Pain Foundation, Co-Director for Cannabis Advocacy