A story beneath the cover- My journey with hEDS and the inflammation connection.
- Amanda Henderson
- Mar 6
- 15 min read
Updated: Mar 24
Written by: Amanda Henderson 2-28-25
Note: I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical advice.
Managing a chronic illness is time and energy consuming and often takes precedence over everything else; it's a massive lifestyle overhaul. Those who live with such a daily struggle often use camouflaging techniques to mask physical issues, which can be well worth the effort to feel more secure in an uncertain world. We often come home and crash for days after outings once we've used up our limited resources. This is a familiar storyline in online chronic illness communities. The strongest people I've ever met are the people who face the challenge to physically survive each day.
As I reflect on my own methods of self-preservation and the last twenty years of my 'chronic life', in my mind's eye, I see a vast ocean with very little shoreline in sight. There are insurmountable ebbs in which I disappear compeletly and peaceful flows in which I appear profoundly capable and in charge of my destiny. At some points in time, my small corner of the world became unrecognizable as I relied on automatic survival skills and other's able bodies while I was incapable of more than feeding, clothing, cleaning myself with help, then sleep and repeat. Reading a book or using my art skills to doodle seemed an unreachable goal. My many diagnoses can leave me with more questions than answers all too often, and yet, there has always been sunshine and beautiful ocean swells propelling me forward at the end of every storm.
On the darker days, my body holds untold amounts of pain in ways that I wish I could explain out loud for better understanding. Fatigue and brain fog can be overbearing and are capable of robbing me of more time than I would like to give. There is not a system in my body that is untouched by defective collagen, the ensuing inflammation, and the inevitable havoc it can wreak. In an effort to try and stay ahead of it daily, I keep track of sleep patterns, activity cycles, medications and supplements, mental and emotional wellbeing and finally, even the food and drink I put into my body. Still, there isn't always a clear answer as to what is happening to me in those moments. It's been a long and winding road riddled with victories and failures that presented more learning and growing than I could have imagined. I am grateful for the spot I have landed on as I am capable of maintaining a precarious comfort level that can be deeply satisfying, though it didn't begin that way, at all.
After graduating from college, I was working as a technical artist at a small company in Iowa. I got more than I bargained for as I found love there and married a colleague in 2005. I was looking forward to a life together all while visiting doctor upon doctor to try and fix my excruciating pain and the GI issues that seemed to be in a constant flare. I tried conventional and alternative therapies, to no avail. It became too much of a burden in Novemeber 2010 when I woke up one day with a limp. I thought it was due to an injury and would heal on its own, but it only got worse. My hips went offline and I was dragging both of my feet around as my ankles gave way. Eventually I had to use an assistive device since I couldn't walk very far without falling to the ground. Finding help and plausible answers were impossible.
As I wheeled around at work on a motorized wheelchair, which was a temporary fix to a bigger problem, I saw a few specialists who couldn't figure out what was going on with me and I began to feel very discouraged. After much trial and error, I ended up at Mayo Clinic in Rochester thanks to a personal recommendation from a friend of our family. I knew just how lucky I was to have made that connection, for I had reached the end of my rope and exhausted all resources at my own disposal.
I anxiously arrived at Mayo Clinic more than a year after my legs gave out and received a lot more testing and saw a wide range of doctors over several months and visits. Finally, a motion analysis study showed my malfunctioning hips and how it effected my knees and ankles, as well. While they weren't sure exactly why all of that was happening, they were certain that my lax ligaments were having a drastic effect on my whole body, which led to the diagnosis of Ehlers-Danlos Syndrome Type 3 (now classified as hypermobile Ehlers-Danlos Syndrome or hEDS). This opened an avenue for more testing with which they were able to diagnose POTS, peripheral neuropathy, ligamentous laxity, gait disorder, chronic fatigue, and chronic myofascial pain. I was also referred to their Pain Rehabilition Center program, and upon completion, they cut me loose with no clear answers as to how to manage this rare disease as the program focused only on the chronic pain piece. So I did what I often do, turned to the internet and cast my net wider to find more answers.
After years on waiting lists, in May of 2016, with the help of a life saving fundraiser, I made my way to Baltimore, Maryland to see Dr. Clair Francomano, a rockstar in the global EDS community. At her recommendation, based on a questionairre I filled out for her, I also saw Dr Fraser Henderson, a neurosurgeon familiar with EDS and its many comorbidities. Dr Francomano easily confirmed a hEDS diagnosis and shared many helpful ideas and protocols for helping me. I began treating Mast Cell Activation Disorder (MCAS) and began the process of receiving regular IV therapy, which were game changers for me. Dr Henderson diagnosed Tethered Cord Syndrome (TCS) and Craniocervical Instability (CCI) and sent me to another specialist who found a neurogenic bladder, which is a confirmation of TCS, and recommended surgery for the TCS as soon as possible in order to stop the disease processes from damaging me further. We continue to follow protocol for keeping an eye on the CCI, which is a much more invasive procedure and should be done as late in life as possible in order to mitigate the issues that can come from having the surgery and hardware installed. I finally felt well on my way to better health and healing from having better understanding and answers.
There really is no such thing as a straight path in life and after receiving such encouraging results, I was about to take a drastic turn. In Novemeber of that year, one evening my speaking became jarring and difficult. I was lightheaded, hot and sweaty, and had an erratic heart rate. I also had a very bad headache and was getting weaker by the minute. A nurse friend at our church told my husband to take me directly to the ER and it was a good thing we followed that order. When we arrived and the attendants were trying to figure out what was going on with me, they handed me flashcards that looked a lot like a children's book. I was perplexed as the nurse asked me to read the words and explain what I saw on the page. I could think the words and descriptions in my head, but my mouth opened wide and no sounds came out. I looked over at my husband who had been trying to maintain his composure up until that point and I started to cry. I had no idea what was happening from within the massive cloud of confusion I was quickly succumbing to, but I was suddenly struck with a fear I'd never experienced before.
They had to act quickly to administer a drug that would dissolve every clot in my body to stop the stroke they were certain I was experiencing. I would need to be completely bed ridden for 24 hours in order to make sure I didn't puncture my skin for I would most likely bleed out if I had. They also tried several times to access a vein for the medicine, but I was so dehydrated they had a hard time finding a viable vein, so they had to leave all those needles in and seal them up tight. Then they wheeled me to the ICU for the long wait.
I lost all memory that night. I didn't know who I was or where I was at one point. I was terrified, disoriented, couldn't speak or make any clear thoughts. I can now recall flashes like photographs of the ceiling, the walls, the nurse, the equipment, as I wondered what it all was. I can imagine it was a moment in time similar to what an infant might experience at its birth. These bewildering thoughts began to recede rather quickly as some of the blanks in my head began to fill in, but it was all a jumbled mess. I was left with aphasia, short term memory loss, and generalized weakness. The first word I was able to form with my mouth openly strangely wide and practically shouting was a simple "OK". It was an answer to the nurse's question and I laughed after it popped out of my mouth. Then she laughed, too, for we knew it meant I had turned a corner.
Over the next several years my recovery was slow, but I was stubborn and independent all while still being very befuddled. Funny thing about brain trauma- you don't know how bad your brain is disconnected until you're able to look back on it later, once you've healed, and compare the past to the present. I often did tasks backwards- like brushing my teeth, then adding toothpaste to the brush afterwards- and I had to relearn, or at least reaccess memories of, daily chores and how to cook our usual meals. My husband helped a lot, but I felt like I was stuck in a bubble, just me and my dogs, day in and out, trying to work out what was going on in our little world. I don't remember a lot of other interaction for a few years following that time. To this day that stroke was a bomb that went off on my timeline from around three years prior to three years after, and I still have difficulties finding words, accessing memories, and keeping time straight. My photo albums have been a life saver for helping me, as they were a pleasant little surprise to see all we had done since I couldn't voluntarily remember anything upon those pages. Throughout this ordeal, my chronic conditions were still present, hanging in the background, waiting to see what I would do with them after they'd done more damage while they were largely being ignored.
EDS has many effects on the body, from chronic inflammation to constant microtears and injuries, and so many bodily processes in between. It's easy to see that Dysautonomia and Mast Cell Activation Syndrome (MCAS) are common comorbidities due to the persistent wear and tear. Together this trifecta of conditions can make the GI system unable to redistribute fluids, vitamins, and minerals properly. I found I wasn't maintaining hydration, which may have contributed to the stroke, so regular saline IVs helped me to recover some energy and my heart rate and GI system began making gains. I was so glad I managed to follow up with this soon after my stroke since it had such profound effects. However, I couldn't find my way to receiving better help or care beyond that until 2019 when I was able to visit with Dr. Petra Klinge and had my Tethered Cord released. I preferred her surgical methods to Dr. Henderson's which is more a of personal choice, but one I recommend looking into. I'm glad for the decision I made, as the recovery was simpler and the results seem more long term. Soon after, the pandemic hit and I wasn't a good candidate for ending up with the virus, so I was very cautious for a while. I also began to require more IVs per week, so I fought to bring my medical care home. My doctor provided the proper orders and found the best facilities for my needs. I learned how to access my own port and administer saline every other day. It was another step forward that had several good outcomes.
Things were looking up, but my body was still not cooperating well enough for my needs. I began to physically fold in on myself and could barely hold my head up. I was so exhausted I would fall asleep on the sofa each night and my GI system was rebelling despite my best efforts and many tests that did not provide clear answers. I was almost completely homebound and my husband drove me to all of my appointments, so it was time to look into other modalities that would help bring back some quality of life rather than continue to deteriorate. I started Physical Therapy with a fellow EDSer and was introduced a protocol that slowly and safely built me back up. I have much better core strength now, though I can only achieve so much strength with the neuromuscular issues that I will always have. This was another step in the right direction.
After about a year of PT, I found an Occupational Therapist that helped me determine another cause of many of my issues, the lymphatic system. She found I have lymphedema and helped me obtain a pneumatic pump at home. My search wasn't complete yet, though, as I still felt there were issues that needed to be addressed.
About a year after very successful lymphatic work I found, with the help of my PT and another EDS patient, a doctor in Colorado who is familiar with EDS and venous compression syndromes, which also happen to be very common comorbidities. I had a stent placed in my left iliac vein after they found it was 87% blocked. The nurse there encouraged me to enlist the help of a venous doctor in Omaha to look into chronic venous insufficiency (CVI) in my legs. After my first visit, they were able to definitively diagnose CVI and I signed up for the procedures to ablate the veins that were causing it.
While I am still in recovery from all of those procedures, I can sense positive changes in my body. My brain is engaging better and my fluids aren't building up in interstitial spaces and under my skin. I can feel nerves firing in places that have been numb for a long time, thanks to less fluid and inflammation blocking proper blood flow. I'm still in pain, fatigued, my GI system is a mess, the pelvic congestion has not resolved, and there are a few days that no bodily function works properly and I fall asleep on the sofa. When that happens, I'll question every aspect of my routine over the last several months, but often there is no perfect answer in trying to maintain equilibrium. I still choose to be enlightened by the gift of clearer thinking, crisper memories, and looking forward to all the improvements I've encountered so far.
Not to be undone by my wild, ever changing journey, I turn to other's experiences in online support groups and I keep up to date with the latest research and developments in Ehlers-Danlos Syndromes. During my web deep dives as to how and why these procedures work so well for EDS patients, I've found that inflammation can run rampant in our collagen addled bodies from several causes. While the foundational issues are caused by lack of and/or defective collagen, a cascade of issues can develop from this.
Collagen is the most abundant protein in the body made up of amino acids and is the glue that holds everything together. There are 28 different kinds and they are synthesized and utilized by several different genes (not all are known). It is in skin, bones, muscles, ligaments, joints, myofascia (which is a thin membrane that wraps around everything in the body) and hollow organs such as heart, lungs and GI system as well as veins and lymphatics. Less and/or defective collagen in the body means more inflammation is bound to be present as flexibility and stability are weakened throughout.
Physical traumas such as microtears in the muscles and myofascia due to collagen deficits also lead to the inflammatory process activating to heal them. Microtears are considered acute/chronic pain factors, but because they happen every day, the inflammation becomes overwhelming and inappropriate. Toxins from these micro-tears as well as all of the stressors that regularly occur can lead to a backed up lymphatic system.
The lymphatic system plays a critical role in fluid homeostasis, immunity, and lipid reabsorption. When fluid flow is disrupted and accumulates, vessel distention, valve dysfunction, and reflux occur, which is common with EDS due to defective collagen. Inflammation can change tissue characteristics, enlarge lymph nodes, and store fat all at once. The lymphatic system will also create collateral lymph veins, which if unable to compensate for the initial lymphedema onset, the fluid accumulation in the interstitial spaces then contributes to an ongoing loop of inflammation that ultimately leads to full onset lymphedema.
The venous system becomes problematic, as well, when it fills with toxins from being backed up with fluids from lymphatic dysregulation. It also has pump valves inside the veins and the backup of fluid makes these areas over stretch which leads to fluid regurgitation. Also, veins can collapse without proper collagen reinforcement which can lead to development of collateral vein systems which, though effective, are often much less efficient than the venous avenues we're born with. All of these issues together will overwhelm the system, which can lead to Chronic Venous Insufficiency and phlebolymphedema, which causes blood pooling in interstitial spaces. This lends to the lymphatic system backing up and unable to do its job properly, and so the cycle continues.
While fluids play a major role in the inflammatory processes of EDS, a majority of EDS patients also have Dysautonomia and Mast Cell issues, as well. Mast Cells are a natural part of the inflammatory process in the body. Mast Cell Activation Syndrome (MCAS) occurs when inflammation continues to happen outside of known causes, so we are left to ask ourselves, which comes first, the inflammation or the MCAS, which issues in my tissues are acute and which are chronic, and which feeds what problem?
Dysautonomia is another such mystery in that the condition's prevalence with EDS is not clearly known. It is dysfunction of the Autonomic Nervous System and its connection with inflammation could be another key component of its connection to EDS.
All of these issues together can lead to a lot of problems in the gut, as well. Nausea, stomach pain, reflux, bloating, diarrhea, and constipation are extremely common, especially in the hEDS subgroup. While the connections and causes are currently unclear, it might be safe to identify inflammation in playing a role in these developments. There are physical problems due to collagen defects and there are Mast Cell issues due to the ensuing inflammation and sensitivities. Treatments are often hit or miss as are diet and lifestyle modifications. More research and development in this area would lead to much better quality of life for EDS patients who are struggling to maintain a sense of normalcy when GI issues are prevalent.
As you can see, EDS and its many comorbidities have many crossovers with inflammation, which can play a big role in exacerbating symptoms across the board. My body is a prime example of this, from nervous system issues to stroke, lymphedema, GI issues and so much more. I am living proof of just how interconnected bodily systems are and how profoundly the inflammatory process can alter it. I have also been able to experience healing some of the effects of the wear and tear on my body that causes many of the inflammatory issues.
There is a vast array of ways that inflammation can affect the body. Here are a few insights that may lead to personal discoveries for you.
Possible Causes of Inflammation:
• Immune System issues
• Mitochondria and Oxidative Stress
• Gut Microbiome Dysbiosis
• Skin Issues influenced by Aging and/or Defective Collagen
• Lymphatic and/or Venous System Dysfunction
• Environmental Exposures
• Unhealthy Diet
• Lack of Physical Activity
• Stress
• Sleep Issues
• Hormonal Changes
• Allergies- Environmental and/or Food
• Genetic Factors
If you feel that inflammation is a part of your life to the extent that it causes distress in any way, such as:
Fatigue, Insomnia, Body or joint pain, Anxiety, Depression or other mood disorders, Frequent infections, Frequent acid reflux (heartburn), Constipation or Diarrhea, Weight loss or Weight gain, Rash, etc..
Also, EDS and it's collagen issues aren't the only disease process that is connected to inflammation, as there are many. If you are experiencing medical issues as a byproduct of inflammation, such as:
Type 2 diabetes, Heart disease, Stroke, Cancer, Alzheimer’s disease, Autoimmune diseases like Lupus and Rheumatoid arthritis, Chronic obstructive pulmonary disease (COPD), Chronic kidney disease, Inflammatory bowel disease (IBD) such as Crohn’s disease or Ulcerative colitis, as well as Vagus Nerve Dysfunction..
You might find some helpful remedies based on your symptoms and diagnosis online. There are a myriad of ideas out there and I encourage you to explore them. If you are struggling to find a cause for your discomfort or specific diagnosis from doctors, please know that inflammation may certainly be a symptom of a root cause that might be difficult to find due to the complexity of its effects on the human body. Also, keep in mind that individual specialties aren't necessarily trained to see the body as a whole and hopefully will be encouraged take a broader viewpoint and learn from those of us who experience medical issues on such a broad scale.
As more information is uncovered and as research is conducted into each of these mechanisms, I hope better modalities will be discovered and a brighter future dawns for those of us living with these conditions. In the meantime, I'm busy at home with my regimen but I'm feeling more comfortable in my own skin than I have for a while. Though there isn't a cure for my progressive and disabling conditions, I am encouraged by the fact that there is so much more to be discovered and that there are some issues that can be helped. Ups and downs and twists and turns are always a part of this process, but the gains I have made along the way keep me moving forward.
If you'd like to learn more, I've blogged more extensively here:
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