Putting the Pieces Together

Chronic illness has left my life scattered and in pieces for almost twenty years. I've found some unconventional ways to put it back together after common treatments have left my health issues all but unsolvable. I hope that my experiences can help others find their missing pieces.

written by: Amanda Henderson April 11, 2024

A zebra puzzle is a fitting visual for a lifetime of chronic illness and searching for answers.

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.

As a chronically ill patient, I've often found myself identifying as a medical mystery due to lack of definitive answers and having too few treatment options. I seemed pretty healthy for most of my life and I was able to deal with minor health issues as they developed. As I reached my thirties, however, it was as if the puzzle of myself that I had put together over a lifetime of learning and growing spilled all over the place and the pieces flew in different directions. Some were lost and others simply no longer fit in my design. What I was left with was unrecognizable as the life I had curated so I went in search of answers to fill in the blanks and devise an image that would fit my new circumstances.

My story begins very typically in a hospital room almost 49 years ago where I was born with a twisted leg and a bad case of constipation. Though my introduction into the world was unceremonious, at best, they slapped a cast on my leg and sent me home. I was a colicky and cranky baby and my mother had to keep an eye on how often I messed my diaper. As foods were introduced and I was terribly choosy about what I would put into my mouth, she also tried her best to get enough nutrition in me to continue thriving. I was always very small, in lower percentiles, and as a toddler some of my earliest memories are conversations with mom that went something like, “have you had a BM today, Amanda?” in a sweet, singsong motherly voice. If the answer was a tiny toddler "noooo" and it had been a few days without a movement, it was time for another suppository, which I remember disliking very much. I just thought that's what everyone did and chalked my differences up to normalcy.

As I grew, eating issues, regulating BMs and more GI problems led to me removing offending foods from my diet. I realized I was picky, but some things really did hurt my stomach. I also often had pain issues, especially in my legs, and I was floppy and wobbly and tired- ALWAYS tired. I was prone to ENT infections, allergies, and was gangly with prominent joints and capable of moving my body in ways that was beyond normal limits. Childhood kept me resilient and oblivious to the fact that not everyone hurt and felt sleepy all the time. Whatever was really going on with me remained a secret for many years until it wouldn't just leave me be and I was forced to try and figure out a better way to deal with it.

All of my prior issues flared with a vengeance at the age of thirty and would not let up. It was my fervent wish to start a family with my husband who had two children of his own. I dreamt of adding my own kids to the mix and wanted to have full abilities to be able to take care of them. Initially, after fighting through the medical system for a few years, I was given a diagnosis of fibromyalgia. It seemed to fit until I tried common treatments that did not work for me. It appeared the mystery would not be easily solved and my illnesses would not relent.

Fast forward a few more years while on the lookout for answers, I began to limp and my feet dangled from the ends of my legs, which had also curved inward from my calves all the way down to my heels in an alarming way. One day I fell to the floor as I was walking down the hallway at my job and I began to worry in earnest about what was happening to me. Without definitive answers, I continued to work through these setbacks by keeping a motorized wheelchair in my cubicle. However, the pain was almost unbearable and the mystery was growing in intensity. Having more tests and seeing more doctors was the only option I had for finding some sort of resolution.

Another year passed and my search led me to Mayo Clinic where I attended a fibromyalgia workshop and endured more tests and more doctors. Finally, a gait analysis for movement disorders revealed the possibility of Ehlers-Danlos Syndrome and a geneticist confirmed it. Officially, I had a diagnosis of hyper-mobile EDS. EDS's main DNA component is damage to and lack of collagen, the main protein in the body that holds everything together. There are 27 different types of collagen and not enough knowledge about how each one is effected by genetic anomalies. It was a great day to receive an actual diagnosis and put a name to such a large piece of the puzzle, but it was also a horrible day to learn there were no treatment options and I would continue to degenerate for the rest of my life. The doctors recommended I attend the Pain Rehabilitation Clinic in order to obtain tools that would help deal with the chronic and debilitating pain. It was helpful in some ways, but had a one-size fits all approach that actually did not bring my pain levels down despite that being a goal of the program. At that time, one of the greatest research and development hospitals in the country knew very little about EDS and its' comorbidities, which left me to my own devices to manage this disease. Though I gleaned some helpful hints for dealing with chronic pain, I was left feeling terrified at the thought that there was nothing to stop the progression of this disease.

Soon after returning home from the month long program, the next piece I placed into my puzzle was disability. I was unable to function in a 40-hour work week because the overwhelming pain, fatigue, muscle weakness and GI issues were so intense, to name a few of the largest concerns. I also had no idea where the progression of my condition would lead and I was beginning to need help to shower and dress. I was still on a mission for better answers, but it would take two or more years to see the specialists I had found in EDS communities online. My entire life was evolving and changing drastically, but I still wanted to find a way forward and not simply give in to it.

Eleven years into my search for health and healing, I saw a geneticist who is familiar with EDS and has dedicated her practice to helping people just like me who were lost to this emerging and all-encompassing condition. It concerned me that my chronic illness had not only eliminated my career and salary, it had cost more than I could have imagined. The doctors I was able to see gave me names for the neurological issues I was succumbing to that were caused by hEDS, Tethered Cord Syndrome and Craniocervical Instability. I was armed with new treatments for Dysautonomia and Mast Cell Activation, as well. I began to believe that perhaps a new life was emerging from the mess I'd unwillingly found myself in.

The next piece came quickly and was a little more devastating to find. It set me back on my journey in ways that I wasn't prepared for. I've since learned these experiences can create roadblocks in your life or new pathways, as long as we're willing to do the work to keep moving forward. In this case, it was a pause in my journey of more tests and procedures that were recommended by the geneticist. I endured a stroke that caused aphasia and severe short term memory loss. Though the doctors couldn't pinpoint an exact cause they do believe it was related to all of my genetic issues. Tests over the years have confirmed that I have small, floppy veins and arteries, hypovolemia (lack of fluids) and lots more questions about my physical issues and how they can effect the body. IV fluids had already been ordered and we decided it would be even more beneficial for me due to these added health concerns. I also eliminated more foods in my diet that are known to contribute to inflammation, such as gluten, meat, and dairy. The low histamine diet was recommended by my geneticist and it also makes a difference in the amount of inflammation in the body. Through trial and error, I found I can't take statins to keep my veins clear and open, so this diet was another option for me. I found myself on a slow path to recovery.

It took a few years for me to get back into the search for more pieces as my brain healed and I was able to hold thoughts in my head and speak clearly again; imagine having to consciously recall how to use a shower or cook a typical meal every day. Luckily, the resilience I'd built up from my physical disabilities was in reserve and I refused to give up on even the slightest details of how to live a more fulfilling life. I was able to connect with another specialist on the East Coast who recommended Tethered Cord Release surgery, which she thought would be helpful based on my symptoms. Though my MRI's didn't show an obvious tether (occult tethered cord), she was confident that this surgery would, at the very least, stop the progression of the disease. From her experience with EDS, she knows that TCS is an often overlooked and seemingly invisible component for patients who share many similarities with my symptoms. Case in point, my twisted leg may have been an indication at birth. The surgery helped neurological and bowel issues to a point, but we found there had been too much neurological damage for too long, so I wasn't able to heal to the state I'd been in prior to disability. My hope is that degeneration from the disease has slowed or stopped and time will give us those answers. I found one more piece of the puzzle, regardless of how it effects my future.

A few years later, I was able to find more forward momentum as my brain began working even better, but I was becoming weaker and the abilities I had fought so hard for were slowly digressing again. The measurements that I check my abilities to were in a state of decline, such as having more pain, fatigue and weakness and less ability to walk. The dreaded BM issues and terrifying brain fog were also overshadowing my prior achievements. The geneticist I had been working with was helpful in suggesting I add more IVs which helped my worsening GI symptoms work a bit better, my dysautonomia and heart rate even out and stay at a normal level, as well as the fatigue and memory issues I was experiencing that made thought and verbal expression feel impossible, lightened up a bit. I do have more underlying conditions than I have names for, but they haven't felt as daunting as they once were. It was one helpful piece, but not enough for me to be content and compliant with my genetic predisposition. Prescription medications generally haven't been a clear answer for me, so I’ve been forced to look for unconventional treatments which have much better results in the long run. With this in mind, I picked up where I'd left off and continued my search, this time a bit more hesitant considering all I'd been through.

In late 2022, I finally found a Physical Therapist who tailors exercises to hEDS as well as the comorbidities and neurological issues that I have. I'd been in several PT regimens prior to this and had become discouraged at the toll it had taken on my body. I couldn't find a fitting piece that would take all of my issues into account. She put me right at ease by explaining how EDS bodies work a little differently than normal bodies. She also provided the pieces I'd been missing, such as loss of motor control in my hips and neurological muscular issues and how to find my best ability within this body's parameters. She helps me work on my posture and core, as well as waking up muscles that do work. It's been encouraging to experience progress even though my insurance company will not cover it.

After implementing an exercise regimen and being reinvigorated by the headway I've been making, I decided there was still room for improvement. I noticed an online support group member's posts about Lipedema and that it was a common comorbidity with EDS. It directly effects the lymphatic system which was a part of myself I hadn't looked into before. I did some research and I was intrigued by the the latest findings as well as its numerous effects on the body. I went to two different specialists who had no idea how to help me, but I wouldn't give up. I finally received the name of an Occupational Therapist from someone in another online support group for lipedema. Though I had no idea what to expect I made an appointment and was pleasantly surprised that it was so rewarding.

I opted to try Manual Lymphatic Drainage in her clinic twice a week and the effects were life-changing. I was thrilled to find so many overlapping pieces that made this puzzling body work better. Issues such as constipation and gastric pain, fatigue, chronic pain and inflammation/swelling, and a decline in cognitive abilities such as brain fog and poor articulation were being addressed all at once. She also found that I have Central Lymphatic Dysfunction and has helped me to obtain a pneumatic pump for home use. I added more compression pieces for my legs and abdomen and she showed me and my husband how to manually drain my own lymphatics as much as we're able to so that I can help this body work to the best of its ability. I hope to graduate to seeing her in the clinic once a month after all of the home pieces are implemented.

Meanwhile, I'm learning more about the lymphatic system and I'm excited to share the latest developments. Currently, Germany and Australia are on the cutting edge, while China and the U.S. are making great strides to add their own insights. Patients are exchanging their developments and outcomes in order to help others, including one brave woman who has devoted her life to taking on treatments, sharing her experiences and developing her own products. Collectively, they've found that some illnesses that are greatly impacted by the newest research include fibromyalgia, lipedema, lymphedema, functional and specific neurological disorders like Alzheimer's and Parkinson's disease, Multiple Sclerosis, venous system issues, inflammatory conditions such as GI issues, dysautonomia, mast cell disorders & allergies, metabolic syndrome that doesn’t respond to normal treatments, cancer, of course EDS and the newest addition, long covid, though this is not an exhaustive list and they are finding more conditions that can be helped by this all the time. The symptoms of these illnesses may seem innocuous on their own but can be overwhelming when they are often overlapping. They include fatigue, brain fog, inflammation and swelling, heart rate unpredictability, a long list of GI issues, and chronic pain in a few different forms like headaches, muscular, or joint pain. Science is continually finding correlations with many of these illnesses and patients with these conditions are often searching for help in non-standard ways just like myself. Many of the treatments that are currently include some kind of surgery, such as liposuction and lymph node transfer. Patients often require a multidisciplinary approach that includes some form of Manual Lymph Drainage, as well. Medications are being studied and compression garments are often recommended. Tibetan singing bowls and tuning forks are being used as tools to find the proper vibration for working, or non-working, lymphatics in the body. Some doctors are creating techniques for home use, and they are helping patients who are stuck in their search for health and healing. These treatment options are not currently studied well enough to be mainstream. Some patients have had to travel outside of the country to find relief, and oftentimes insurance does not cover the surgeries and travels that they require. Fighting insurance companies and finding the best doctors that keep up with the constantly changing landscape of care for their illnesses can be tiring and discouraging. At the end of the day, finding out how involved the lymphatic system is in the body's processes and treatments that can help it is a promising outcome. That so many mystifying conditions can be helped is enough to make my brain spin, which leads me to wonder if I can use what I've learned to help other patients in some small way.

After so many years of losing pieces, I feel I’m finally gaining more and creating a clear, more finished picture of what I hope my life will look like. I'm adapting, redirecting, and trying my best to live within my parameters and give myself a little grace. Though I've come to terms with the fact that this body is not capable of normal function and I have major issues that are not capable of complete healing, I'm going to keep searching for pieces that can help keep me as mobile as possible, in a more tolerable amount of pain, and capable of using the toilet (yes, mom!). I'm hoping that medical advancements continue to provide even more relief, as well. Now that the lymphatic connection to my EDS issues has been found, it's turned on a lightbulb of discovery and helped me realize how connected the venous and GI issues have been with this giant piece of the puzzle that I was missing. Though I have that clarity now, there is no science explaining why my body so drastically does not work. I don't know why I find relief from pumping fluids in and then having them moved around manually. There must be a mechanism behind how it all fits together, but it's still a mystery. I'll also probably always wonder, if I’d been able to find better answers sooner would my life have turned out differently? Though I may not have an answer to that either, I sincerely hope that the quest I've been on for the last almost 20 years with 80 doctors and counting, leads me to be a pioneer for others to find their pieces sooner for better results and perhaps with less trial and error.

Thinking ahead, I’d like to see Physical Therapy that is much more individualized and Manual Lymphatic Drainage and compression pumps become a common treatment option for chronic patients. It would be wonderful if they wouldn't have to fight so hard to obtain them, as well. I also think it would be beneficial for hospital recovery rooms, nursing homes, and pain management facilities to provide teachable options that won't cost a patient money to utilize. Perhaps a PCP could prescribe these instead of pills, sports medicine could provide chemical free options for injuries and even someone that has a cold or allergies could just start palpating their head down to their chest and find that a manual drainage technique can be just as helpful, if not more, than a medication. A future that costs us less and places healing in our own hands is something I could look forward to.

After sharing lots of ideas to ponder I'll leave you with this; many chronically ill patients must think outside the box in the struggle and search for relief of many physical concerns due to many uncommon and often invisible issues. We can help them by listening to the experts who are on the forefront of these answers and by looking for answers beyond prescription drugs and common treatments. Between the lines is where you'll find the patients who are still searching for pieces and perhaps someday these options will benefit you, as well. You'll have a piece of the puzzle that will inspire others and give them hope to keep moving forward. That very piece could be just what it takes to make them feel more complete.