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    6 People Answer 'You Know You Have Ehlers-Danlos Syndrome When...'

    Ehlers-Danlos syndrome (EDS) is a condition that impacts the joints, skin, and blood vessels that can lead to translucent skin, bruises, dislocations, and more. One thing about living with a health condition is that you are very rarely alone in your struggles. For example, The Mighty is a community full of people with various health conditions who understand what it’s like to live with them. That means you’re surrounded by people who not only “get it,” but they’re able to find relatable humor in their experiences. The Mighty’s editorial assistant Skye, who lives with EDS, posed a question to our EDS community with that in mind. She asked our community to fill in the prompt, “You know you’re an EDS patient when…” Her personal answers were: “Maybe you’ve been sitting at the dinner table with friends when someone points out that you’re sitting with your legs intertwined in an ‘impossible’ position, or you could be on your third specialist appointment of the day and still have physical therapy that evening.  My most recent ‘You know you’re an EDS patient when…’ moment happened when I squatted to play with my dog and my dad said, ‘How does a human move like that? You have frog legs!’” Her fellow zebras understood the assignment, and came forth with their own answers to the prompt immediately. Wait, the way I’m sitting is weird? “I was sitting on the couch watching TV with my mom. She looks at me, ‘Uhm is that seriously comfortable?’ In my head, I’m like ‘You know the answer. I’m 33, you know me.’ I’m like ‘Yes. Yes, I very much am in my pretzel shape.’” – @Dakota0419 “Just yesterday I had a coworker ask me ‘Are you really comfortable like that?’ and I was in a full squat. Feet flat on the ground and knees to my chest. I looked up and said ‘It’s comfier than standing,” and he just shook his head and walked away.” -@Meagancsantaa Ouch, that hurt. “When you can put your legs behind your head but can’t hold a pencil right. When you fall asleep on the couch sideways and your spina bifida vertebra adds two extra fractures and cysts filled with spinal fluid.” – Jessica MacLean “You know you’re an EDS patient when you sleep in the butterfly stretch position and you’ve subluxated your wrist brushing your teeth.” -@Megandorriesfield852 “…When one mosquito bite turns into a whole body itch-fest!” – KJ Did someone say bruises? “…When you wake up with multiple unexplained bruises after a night’s sleep.” – @Moontide99 What about you? How would you answer this prompt ? Let us know below or comment on the original post!

    Community Voices

    I’m Tired of Living Like This

    Today, I went out for about three hours with a friend. I really enjoyed my time with them, but when I got home, my body shut down. Fatigue set in, and as much as I wanted to resist taking a nap so late in the day, I felll asleep anyway.

    Now it’s late at night, and my body is complaining about me going out and doing things. I can’t sleep because I napped earlier, and my joints are in misery. I needed to tell someone, but I didn’t know where to go. So I’m here. Talking to people on the internet that I’ve never met before because I trust them to treat my condition with more respect than my IRL friends.

    I hate the fact that I have to spend so much money on braces instead of nice clothes. When I went on a trip out of town for a few days, I had a whole bag filled with knee braces, a back brace, compression socks, elbow compression sleeves, compression gloves, and ring splints, plus my cane. It still wasn’t enough to keep me together, and now I have to go searching for ankle and shoulder braces.

    I’m tired of living like this, and as lovely as my friends are, I know that they can’t understand how much I perform to look healthy enough in front of them to be accepted. It’s that or slipping into social isolation, which I can’t risk doing for my unstable mental health.

    I want to be able to go out and do fun things on a whim without having to consider my current pain level. I want to not have to purposely schedule large chunks of downtime into every single day so that my body doesn’t collapse on me. I want to not have to deal with deciding whether I need my cane enough to stomach the ableism that will come my way or if I can suck up the pain enough to avoid any comments.

    I don’t really know where I’m going with this, so I’ll stop now and try again to get some sleep. #EDS #HSD #Osteoarthritis

    2 people are talking about this
    Megan Glosson

    How Roe v. Wade Being Overturned Harms People With Health Conditions

    This past Friday, the Supreme Court voted five to four in favor of overturning Roe v. Wade. This landmark court decision from 1973 established the constitutional right to abortion. Now, individual states will get to decide whether or not they will allow abortion. People across the country are experiencing mixed feelings about this perplexing court ruling. However, many people, including the justices who voted in favor of overturning the court’s previous ruling on the matter, are not thinking about the way in which this decision will impact the millions of American women and people with a uterus who live with chronic health conditions. So, here are just some of the people the justices of the Supreme Court of the United States failed to consider when they overturned Roe v. Wade and all but outlawed abortion for over half of the states in our country. 1. The Transplant Recipients Whose Medications Make Pregnancy Problematic Although it is possible for a transplant recipient to get pregnant and carry a baby to term, there are many potential complications. First and foremost, many anti-rejection medications can cause birth defects that would make life unsustainable for the fetus. They can also build up to toxic levels in the fetus’ bloodstream, which can lead to other complications. Although there are some medications that are safe for the fetus, any change in immunosuppressants must be made gradually so doctors can measure if these medications are actually doing their job (because not every medication works for every person). Also, because medication levels are based on weight, pregnancy can impact the medication levels in a way that leads to organ rejection during the pregnancy, making it a life-threatening situation for parent and fetus. 2. The People Whose Autoimmune Disorder Could Cause Complications Many autoimmune disorders cause your immune system to attack healthy tissue. This means that a pre-existing autoimmune disorder can interfere with the pregnancy by harming the fetus. Even if the autoimmune disorder allows the pregnancy to continue, the mother’s antibodies can enter the fetus’s system and disrupt its development and growth. Furthermore, some people don’t even know they have an autoimmune disorder until their pregnancy triggers it. In these cases, a person may find that being pregnant is interfering with their life so much that it’s not possible to continue living while pregnant. 3. Those Who Live With a Genetic Disorder That Could Prove Fatal for the Baby Living with a rare disease is not an easy road. However, some genetic disorders can be fatal, and passing them down to a child can increase the risk of fatality for the baby. These conditions include Huntington’s disease, vascular EDS (vEDS), cystic fibrosis, Marfan’s syndrome, and many other genetic disorders that someone can either have or be a carrier for. Even if the baby makes it through delivery, they will have a hard life (assuming they can sustain life). 4. The People Whose Endometriosis Caused an Ectopic Pregnancy People with endometriosis are twice as likely to experience ectopic pregnancies than the average person. Unfortunately, there’s zero possibility of an ectopic pregnancy becoming viable, no matter what marvels of modern medicine an OBGYN can perform. Usually, ectopic pregnancies are treated with injections that end the pregnancy or surgery to remove the fallopian tube. Either way, these life-saving medical procedures can be considered forms of abortion, and would now be punishable by law in some states. This means that people could face jail time for something completely out of their control just because they chose to save their own life. And without Roe v. Wade, there’s nothing a person can do about it if their state’s court system decides to rule against them. 5. Those Whose Cancer Treatment Would Affect the Fetus Breast cancer is the most commonly occurring type of cancer for women, and breast cancer rates are on the rise for women of childbearing age. Unfortunately, many of the recommended forms of cancer treatment can cause harm to a fetus and are not compatible with pregnancy. There are instances where a pregnant person with cancer can either wait until after their child is born to undergo treatment or select treatment methods that are least harmful to the fetus. However, there are also times when someone may need to decide whether it’s better to end a pregnancy during the early stages so they can undergo cancer treatment, or risk bringing a baby into the world while also dying. It’s not an easy decision to make either way, but the overruling of Roe v. Wade now makes it even more challenging. 6. The People Who Live With Mental Health Conditions That Require Daily Medications There are countless mental health conditions that require daily medications. Some of these conditions include depression, anxiety, bipolar disorder, and schizophrenia. However, even with the wide variety of available medications out there for each and every single mental health condition, the American College of Obstetricians and Gynecologists still says a majority of these medications are not safe during pregnancy, especially during the first trimester. Whether a pregnancy was planned or unexpected, a pregnant person who uses one or more psychiatric medications may be forced to decide whether or not they want to expose their fetus to the risks associated with the medication. In many cases, these medications can cause harmful birth defects or even harm the fetus in a way that makes life unsustainable. Therefore, these individuals need as many choices as possible available to them, including the right to terminate the pregnancy if that’s what they and their medical team feel is best. 7. Those Whose Epilepsy Puts Them At Risk for a Stillbirth Women with epilepsy are up to three times as likely to have a pregnancy that results in stillbirth than women who do not live with epilepsy. Sometimes, there’s no way of knowing whether they will experience a stillborn birth, whereas other times an OBGYN may no longer detect signs of life before the pregnant person even hits the third trimester. Without the option to abort, these individuals will be forced to carry a pregnancy to term even though the fetus will no longer grow and develop. 8. The People Who Almost Died With Their First Baby and Don’t Want to Go Through That Again There’s a lot that is still unknown about how pregnancy impacts the body. Conditions like pre-eclampsia are largely undetectable until it’s too late, as are other rare pregnancy complications. However, people who experience these issues during their first pregnancy are more likely to experience them again. This means a person may take active measures to avoid additional pregnancies. Unfortunately, no form of birth control is foolproof, and a person can still end up pregnant even when actively avoiding it. Should these individuals have to go through the same hell they endured during their first pregnancy if they don’t have to? And is that really someone else’s choice to make? 9. The Trans Man Who Would Struggle With the Dysphoria of a Pregnancy Thanks to the advances in modern medicine, trans men can do many things to counteract the gender dysphoria they experience. However, up to 30 percent of trans men still experience unplanned pregnancies. These pregnancies can lead to depression and other concerns due to the mixture of dysphoria and judgment from society. Before the overturning of Roe v. Wade, trans men could decide whether or not they wanted to go through with a pregnancy. Now that it is overturned, trans men in states with abortion laws in place may have no choice, and this combined with the stigma they likely already face due to society’s general view of the trans community in their geographic location, could cause depression and suicide rates to climb even more. This list isn’t exhaustive. However, it does provide a view into just how many people will be impacted due to the Supreme Court’s decision to overturn Roe v. Wade. In many cases, people who live with health conditions are already marginalized and mistreated by medical providers and society as a whole. Now they may face even more problems and harsh judgment just for making decisions that can help them continue to live. This isn’t the type of treatment anyone deserves, especially people who already have to fight for their right to live day in and day out.

    Coping With the Effects of Ehlers-Danlos Syndrome on the Whole Body

    Seeing a bird perched perilously upon a high wire seems reminiscent of living with chronic illness, which is a human health condition or disease that is persistent or otherwise long-lasting in its effects. I’ve thought about what life can be like for the chronic illness community. Some days, chronic illness can seem to take up the entirety of a room, and accomplishing anything outside of the difficulties of the illness may feel impossible. Other days, you may be able to hold chronic illness in your hand, place it in your pocket, and carry on as you try to create enough good memories to get you through to the next inevitable hard day. Ehlers-Danlos syndrome (EDS) is a rarely diagnosed condition that affects every system in the body. It mismanages the production of collagen, the protein “glue” of the body, and it weakens every part that is involved. Skin, joints, ligaments, and hollow organs are directly affected — which leaves the rest of the body with a cascade of struggles. There are 13 different types of EDS, and more are added as they are discovered. Some are more severe in their presentation than others, and they affect each patient differently. This makes it difficult to have a universal treatment plan for all of the symptoms that may occur. Currently, there is no cure for Ehlers-Danlos syndrome, so mediating a body’s response to the collagen defects incrementally is typically the best way to have the highest quality of life. Also, responding to each patient’s individual difficulties in their own way can help them feel validated and respond better to treatments that can truly help. One major hurdle many of us with EDS often have to deal with is not being heard and treated properly by our doctors. Generally, doctors are not trained to deal with conditions that can affect every part of the body. Medicine is usually more of a “reactive” profession — treating what is obvious and emergent — than a proactive trade in which symptoms are treated before they get out of hand. This system can be difficult to navigate as a chronically ill patient with multiple needs. We are sometimes pushed through appointments without having the time to dig to the root of each symptom completely. The areas in which we live, the insurance that we have (or don’t have), and the amount of money we are able to spend on treatments and out-of-pocket costs are big factors in the amount of care we are able to obtain. This process can leave us feeling lost, embittered, and alone when we are not able to stay on top of our chronic illnesses. It can also make us feel ecstatic, hopeful, and accepted when we are simply heard and a doctor is willing to try the treatment plans we have researched so diligently. There are often no easy answers for this, and no amount of being more assertive about what our needs are can necessarily help. It’s a delicate balance in a system that is not built for treating chronic illness. I’ve had multiple doctors placate me to not look for further diagnoses, stating that “One ‘zebra’ found is enough” or “We like to keep everything in one basket,” though doctors don’t often realize that with EDS, all diagnoses are the same “zebra” and in the same basket. The more identifiable traits that can be addressed and the more manageable our entire syndrome can be, the higher the quality of life and the greater longevity we’ll tend to have. Another major hurdle we often deal with is having bodies that have “minds of their own” and will often not cooperate when we want them to be active. Many types of EDS are multi-systemic conditions that have many comorbidities, which are other illnesses or conditions that are caused by Ehlers-Danlos syndrome. EDS is also a progressive illness, which means it can continually get more severe as we age. When we have flares that exacerbate the symptoms in one body system, it can have a ripple effect to other systems and be so overwhelming, painful, and untreatable that we cannot leave our homes. These ripples can last for days, months, or even years without proper treatments, guidelines, and cures. Living with EDS can be a never-ending cycle when there are so many factors that lead to delicate imbalances in such a difficult-to-manage system. We must often consider everything we consume, how we sleep or spend our time, where the bathrooms are at every location, whether we’ve been keeping up with a hygiene routine, how accessible the areas we wish to visit are, and the effects we may have to deal with after a social excursion of any kind. At this time last year, I was barely able to leave my home for appointments — and I couldn’t do much else. My health had gotten to the point of being bigger than I could handle, and I couldn’t stabilize it. For the sake of learning, growing, and teaching, I’ll share some details in this latest physical hurdle. 1. I feel exhausted to the point of often not being able to drive myself. Even walking the dogs in a zombie-like state was a chore I could hardly endure. Running an errand? Never. I do have blood sugar symptoms too, which contribute to exhaustion, but fortunately, there are current studies regarding EDS and diabetes. Many rare diseases are on the verge of breakthroughs of varying degrees all over the nation, but for now, I struggle with being tired. 2. Everything I eat goes through me. I can no longer determine which foods I was sensitive to even though I don’t have many foods I can eat. CT scans revealed stool retention even after a 24 hour cleanse, so I was “backed up.” Everything getting through is called “overflow,” which generally consists of collected water. I was incontinent because of this — sleeping on pads and towels, only leaving the house when necessary, and using pads, crossing my fingers, and hoping for the best. This is a rarely talked-about part of health decline and can keep a person at home all on its own. I knew the next steps could be dire, and I wasn’t looking forward to those possibilities. 3. My thyroid wasn’t always producing as much of its hormone as it should be. This is no surprise since I only have half of my thyroid. Just getting it within “healthy range” was not enough for me — I had to fight to get it down to a lower number based on symptom improvement. This took several months and appeals to the doctor, and it made a positive difference, but did not clear up all of my health struggles. I’m used to not having all health symptoms worked out, but the more symptoms resolved, the better. 4. My muscle fatigue and weakness has increased. This is probably because of all of my exacerbated symptoms. My legs are the weakest, but I do have generalized muscle weakness due to neurological issues resulting from hypermobile Ehlers-Danlos syndrome and tethered cord . The earlier EDS and its comorbidities are diagnosed and treated, the better. 5. I’m always in pain everywhere. I believe the increase in my pain is due to exacerbated symptoms and other conditions, like lipedema and Sjogren’s syndrome, that I’m still trying to get diagnosed. This is yet another reason why diagnoses and treatments are so important. 6. My skin and liver are struggling right now. I’ve always had skin that flares after a shower. Lotion helps, and treating mast cell symptoms does so even more, but splotchy, red, dotty, tiny, itchy patches everywhere? This is new. Also, we found a spot on my liver, and we have to keep an eye on it. I had one “good” organ left! Ha! 7. I visit many doctors. I even finally have a new internist, but they just seem to be a cog in the wheel of never-ending tests, procedures, and difficulties. I have recently received some help in much better ways than I have before, and now, I’m starting to catch up on treating a few of my chronic symptoms. I feel blessed that I still have some life left in me and am not completely relegated to my house at all times, but I still have to be vigilant about “overdoing it.” I sometimes feel like I have a cloud of worry hanging over my head as I wonder when my life-changing symptoms will surprise me next, even as I try to live my life to its fullest and stay grateful for what I have. When you see me smiling, it is genuine. My smile may mask my difficulties, but I’ve truly found happiness in focusing on the positives. Having a silly husband who naturally evokes laughter helps too. Here are some treatments that are currently helping and making a positive change for the better: 1. I get saline IV infusions. Navigating the medical system to receive this much-needed care was difficult, but the effort was worth it. I now access my own port weekly and administer my own fluids. I have dysautonomia (My autonomic nervous system does not regulate properly), I have hypovolemia (I have low amounts of bodily fluids), and I have a lot of neurological damage that keeps my gastrointestinal (GI) system from working correctly. This treatment has brought some of my body back to life. 2. I take supplements. Some of my supplements help me rebalance electrolytes, while others keep my joints and tracts in working order. Potassium, magnesium, salt, vitamin D3, B12, multivitamin, even cranberry and glucosamine chondroitin all play roles in helping all of my systems work as well as they can. 3. I wear braces. It’s best for me to stabilize my joints from the ground up. I have shoe orthotics to keep my arches in place and ankle, knee, and joint braces to keep everything as stable as possible — which helps lower my pain levels and increase my leg stamina. 4. I use adaptive devices. I use a wheeled walker for any distance outside of my home and a power wheelchair for longer distances that I can’t navigate on my own. My legs gradually lose power as they are used. This is common in EDS, but society can be difficult to navigate when your ability level isn’t constant. Most days I don’t notice reactions, other days I can’t help but notice. Hopefully, someday, tolerance and objectivity will rule. 5. I eat to meet my body’s needs. I don’t eat meat or gluten, and I watch my histamine intake too. With so many medical conditions constantly vying for my attention, I try to keep all of my systems as happy and compliant as I can. I cannot tolerate statins, and after my stroke, eliminating meat was the best solution for keeping the right cholesterol levels and a healthy heart rate and blood pressure. I keep my protein levels up with plant proteins. My body doesn’t respond well to gluten, so it’s not an option. Everything in my body works more easily when my GI system is engaged and functioning as best as it can. When the medical community and our physical bodies are determined to hinder our best efforts, I am thankful that the internet can provide some answers and relief. It helps me find other doctors in my area and locate insurance providers through the help of online support groups. The experiences and connections that others with chronic illness share can be so helpful in finding any small measure of positive reinforcement. A friend in one group stated that people with chronic illness often get so used to being in “survival mode” that we may tend to have a different quality of life baseline than most other people have. That sure hit home. We also may “mask” well to try to fit in, but masking our symptoms can be invisible to others and may twist our perceptions of ourselves. If you’ve been surprised by anything I’ve mentioned thus far and wonder why you don’t know these things are happening, keep in mind that “survival mode” is a place in life that may make it difficult to reach out or talk about what we may be going through. Chronic illness survival calls for extra grace, mercy, and leniency in not taking cancellations or long pauses personally. In fact, reaching out can help us have support systems that can help us move forward. It can also feel daunting to breach the chasm that forms while we’re busily trying to keep our bodies going or are figuring out how to navigate our conditions in public. Consider that some of us with chronic illness may feel like a “burden,” which can take a lot of work to overcome. In fact, it took me two weeks to write this article. It is daunting to put myself out there and be vulnerable about such life-altering symptoms, but hopefully, the help it can potentially bring others will be worth it. Trying to receive the basic care needed to enhance wellbeing with chronic illness can feel like a two-step shuffle. The possibilities of something going “wrong” can seem endless, but I urge and encourage anyone struggling with lack of proper care and diagnoses to strive to move forward regardless of the hurdles. While it can feel lonely and daunting along the path of living with chronic illness, you are not alone. Together, just like a herd of zebras, we are a dazzle, and the more we all learn from our conditions independently, the more we can share and look forward to as a group. We can be a flock of birds on a wire, perched perilously but proudly.

    Community Voices
    Beth

    Tortoise Thoughts

    <p>Tortoise Thoughts</p>
    6 people are talking about this
    Community Voices
    Beth

    Little Bit of Progress.

    <p>Little Bit of Progress.</p>
    27 people are talking about this
    Community Voices

    Going for an EDS Diagnosis

    Hey all, I hope this is allowed (I don't think I saw anything in rules to say it isn't), but I was looking to get some thoughts on what I think may be EDS (perhaps hEDS) and my next steps.

    This post will probably be pretty long, so I apologise in advance for that.

    So, I was diagnosed with Fibromyalgia about three years ago. The GP also thought I could have ME. Generally speaking, I have been in constant widespread (joint and nerve) pain for the past 15 years, but every few years I seem to deteriorate further.

    I haven't experienced dislocations, but perhaps subluxations. I honestly am not entirely sure, though I feel like I should be. My joints are extremely tender, get worse with movement, and I click frequently (which seems to also cause pain).

    I don't have stretchy skin and I'm overweight. Basically, what I'm saying is that I don't believe I will be listened to by doctors because I don't fit the generalised view of EDS.

    I also didn't think I have EDS (a few of my friends do) until people started mentioning the possibility to me. After having done a lot of reading, I'm starting to see it might fit, but I've experienced so much invalidation, weight shaming, and placing blame on my mental illness from so many GPs now that I'm scared to seek help. As such, I've decided to raid the little house deposit savings I have and seek a private diagnosis, in the hopes I can be referred back to the NHS for treatment.

    So, I guess what I'm looking for from the group, if possible, is some thoughts on whether you think my symptoms align with a diagnosis of EDS. I'll list what the worst ones are for me below:

    Injuries: last year, I herniated my disc from simply turning around on the sofa. I've been in constant pain since and am due to see orthopedics next week.

    Bladder Control: a year or so ago, after experiencing bladder issues for years, I lost a lot of my bladder control. I need to pee every few minutes, though when I try, it often takes a long time to actually be able to, and I've had to wear pads now for months due to a lot leaking. Sorry if this was TMI!

    Possible Subluxation: a bone recently popped out in my wrist and has been painful and tender for about a month. I've been too scared to go to the GP. I eventually tried pushing it back in myself and it seems to have shifted somewhat, but isn't exactly as it should be or was before.

    Digestion Issues: I've long believed I have GERD (silent acid reflux), but only recently discovered those with EDS often have digestive issues. I had a really bad episode, lasting six months two years ago, but it dissappeared with only a few symptoms remaining. I am currently going through two months of not being able to eat (or even drink water) without belching, dizziness, bloating, gasping for breath, heart palpations, etc. I'm so, so uncomfortable and scared to eat. I've been told by friends who have it that this also sounds like POTS (I also experience a lot of dizziness upon standing) and MCAS.

    Food Allergies or Intolerance: this one has been with me since I was a child, but the foods I can eat without symptoms are becoming less and less. I recently discovered soya is a big no-no, feta recently made my mouth swell up after years of tolerating it. The list goes on.

    Mobility: honestly, this is where I tend to gaslight myself because I'm overweight, but I know other overweight people who don't live like this, so I'm trying to be kinder to myself and validate what must be something physical. So, I try to walk from the car to work (I am a jewellery maker and have my own studio, so can luckily work to my own pace). The walk is roughly ten minutes, but it is enough to cause a flare-up for the rest of the day. That said, walking is infinitely less painful than standing. Even before my back injury, I have long (maybe the past 10-15 years) experienced severe pain in my lower back when standing. The only thing I've found to help with this is if I sway gently from side to side. The gentle movement seems to help me stand for a little longer, but it's still agony.

    Issues Sitting: I don't know if this is anything to do with EDS, but I have been unable to sit upright on a sofa or most chairs for longer than a few minutes without experiencing severe pain in my lower back and legs. I often cry because I want to sit up, but I always, always have to resort to lying down.

    Joint Pain: All my joints seem to hurt, but the worst is, by far, my hips. As a side sleeper, I find it terribly painful to try to sleep at night. It feels like I'm lying on a brick! Ive also had an extremely tender ribcage for the past two-three years, so much so that now my partner can't cuddle me without excruciating pain and pressure.

    Weakness: again, I'm unsure if this is related to EDS, but I haven't been able to hold a book for about ten years, maybe longer, because I physically cannot bare the pressure it puts on my wrists, the weakness it causes in my arms, and the pain it causes in my neck and shoulders. As such, I read, lying down, with a Kindle. It's the only way it's manageable.

    Uff, I'm so, so sorry! I know this has been an essay! I just wanted to provide as much information as possible in order to get some feedback.

    Looking at the EDS diagnosis, I'm pretty uncertain if I have it (some questions I don't understand, others I don't have answers for), but reading about EDS in forums, talking to friends with it - that's when I start to think... this could be it.

    I guess I'm wondering if I'd be wasting time and money to see a specialist when this might all be something else.

    Thanks so much for reading. ❤️ #EDS #EhlersDanlosSyndrome #HypermobileTypeEDS #ChronicIllness

    7 people are talking about this
    Ellen Lenox Smith

    Finding the Light in Life With Ehlers-Danlos Syndrome

    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.

    Community Voices

    I’m starting to think I might have Gastroparesis.

    Ever since I was a baby, I’ve struggled with stomach issues. I’ve never been able to vomit normally - I literally projectile vomit EVERY time. I’ve been told it looks like I’m a cartoon when I do it. I end up with EXTREME stomach and throat pain. And over the years, I’ve noticed that I can sometimes not have eaten for 6+ hours but I’m still bringing up an excessive amount of what appears to be undigested food.

    This past weekend, I managed to catch Norovirus - the “winter” vomiting bug. Between the hours of 3:30am and 8:30am on Sunday morning, I was curled up on the bathroom floor sobbing, unable to stop myself from bringing stuff up. But I hadn’t eaten since 6:30pm that evening. So, it had been around NINE hours WITHOUT consuming anything other than water.

    TRIGGER WARNING - this part might be a bit gross…

    When I started vomiting, I could SEE what I’d eaten for dinner. Very clearly undigested cucumber, cherry tomatoes, and stuff like that. I managed to fill a 2 LITRE bowl up twice in the space of about 30-60mimutes, then I continued to bring up insane amounts of bile (BRIGHT greenish yellow) for HOURS afterwards. This can’t be normal, surely? I thought the stomach was supposed to be empty after 4-6hours? But to have a FULL stomach after NINE hours? Jesus. I haven’t felt so ill in all my life.

    From all the retching and vomiting, I’ve torn the muscles in my sides and my abdomen - it’s really hard to laugh and cough without crying. My fever was originally 39.8°C but is now down to 37.9°. I’m still achy, though. I imagine it’ll be a few more days before I’m back to my version of ‘normal’.

    I’ve had SO many investigations for acid reflux, stomach aches and GERD in the past. All we ever found was the GERD, a hiatal hernia and VERY inflamed stomach linings. Surely gastroparesis would’ve been found before now…? How do I go about having this looked into?

    Thank you all in advance, guys. And I’m sorry for the graphic description of my puke. 😬

    #chronicillnesswarrior #ChronicPain #GERD #IBS #NAFLD #POTS #EDS #Dysautonomia #Norovirus #TMI #SicknessBug #InterstitialCystitis #Diabetes #Migraines

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