Jordan C’s Personal Experience with Zion Physical Therapy!
Thank you Zion Physical Therapy and my physical therapist Staci Levine for all of your ongoing support. I am very grateful and excited for the opportunity to share my experiences. Physical Therapy changed my life. I hope my story will help someone else going through a similar situation and create more awareness and understanding around Abdomino Phrenic Dyssynergia (APD) and Pelvic Floor Dysfunction (PFD).
In October 2012 when I was 16 years old, I had a very sudden onset of symptoms. I woke up one morning and my belly looked pregnant. The following days I began to experience constant major abdominal distention, and discomfort especially when eating, or even just drinking water. The bottom of my belly would be hard and round and I would get this squeezing feeling at the top of my rib cage that felt like I was being strangled from the inside. I felt this intense pressure around my ribcage and lower core. I felt bloated. It felt like a balloon of air and simultaneously heavy rocks were forever implanted in my stomach. I always felt full, like a Thanksgiving meal that would never go away. No matter how much I exercised, or how much or little I ate, the round pregnant-like distention would always be present to some degree and would get worse as the day would progress. I would have to wear XXL t-shirts to hide my round abdomen. I would feel sick for hours after meals. I was not able to eat a lot of solid foods and began to have a more liquid based diet that consisted of protein shakes, smoothies, and other soft foods. My diet was very limited and there was no food that didn’t make me feel sick, it was more a matter of finding what I could tolerate the most.
For years this was a mystery and I saw many doctors and heard a variety of speculations. Doctors would tell me the distention and pain was because of slow GI motility, or possibly SIBO (small intestine bacterial overgrowth) or perhaps food sensitivities (I tried so many diets, although I ate very clean, nothing helped the bloating, distention, and top of the rib squeezing sensations). Some doctors accused me of having an eating disorder. I had doctors just dismiss my symptoms and tell me that it was all in my head.Other doctors would tell me to do more core exercises. One doctor even wanted to do a botox injection in my pyloric sphincter. Most doctors would just not know what to do and pass me along or hope my GI problems would get better over time by itself. There was also a question at one point if I could have MALS (Median Arcuate Ligament Syndrome) due to my symptoms and diagnostic imaging.
I was diagnosed with slow GI motility and ultimately Gastroparesis back in 2012. At the time I was experiencing major constipation. There was a period of a few years where I would have up to six capfuls of Miralax every night as well as drinking two to three gallons of Golytely (a medication often prescribed to cleanse the colon in preparation for a colonoscopy) every four to six weeks just to avoid getting hospitalized for severe constipation. This led to me eventually being diagnosed and treated by the Mayo Clinic in 2014 for Pelvic Floor Dysfunction using biofeedback methods. PFD can commonly occur simultaneously with APD since the pelvic floor and diaphragm have a close pressure relationship and their synergy plays a large role in the core functioning optimally. The Pelvic Floor Dysfunction can present differently depending on the person but in my case, my pelvic floor was so tight that it was not releasing properly and would contract instead of relax. It’s worth noting that I was also diagnosed with Autonomic Dysfunction which was playing a huge role in my constipation and GI troubles and could perhaps be what caused the PFD and APD (but we will never exactly know for sure). Doctors figured that treating the Pelvic Floor Dysfunction would also solve the APD as well. But despite treating PFD and the constipation slowly improving, I still had no relief in the upper rib squeezing sensation, major distention, air in stomach, and pain and discomfort with eating.
Another two years went by and doctors told me that it seemed like some of my GI symptoms could still be related in part to APD. They told me there was not a lot of research on APD and there was nothing much that could be done to treat it at this point. Simply put they said “it is what it is” and just continue to practice some diaphragmatic breathing. I just couldn’t believe that there was no way to help it, that just didn’t make sense to me. There had to be something we could do. Over the course of the next three and a half years I always had APD in the back of my mind and continued to bring it up to different doctors with the hope that someone would know something that could help.
After a total of six and a half years of dealing with these symptoms all day, every day, I had a consultation with a GI doctor at Weill Cornell who had heard of physical therapy for APD. She referred me to Zion Physical Therapy in NYC. In April 2019 I started physical therapy with Staci Levine. She was so kind and patient, I quickly knew I could really trust her and she would be the absolute perfect person to help me! She made me feel comfortable opening up in detail about the struggles I went through and was living with. She listened with such compassion and not once did she dismiss my symptoms. I was so excited and grateful to have someone believe that I could feel better and be willing to work with me.
For the next 12 months we constantly worked to release my diaphragm and pelvic floor, retrain the muscles coordination, and strengthen my core muscles. The goal was to make sure the diaphragm and pelvic floor were both releasing as effectively as possible, this way we could coordinate their functioning. With PT my pelvic floor started to release with more ease and began functioning better than ever. Treatment included abdominal/colonic massage, internal rectal muscle releases in coordination with proper relaxation of the pelvic floor, core activation exercises and core strengthening, posture education and taping to re-educate neuromuscular control. We also worked to relax my very tight upper back muscles and increase mobility in my thoracic spine. This helped loosen around my rib cage which created more freedom for my diaphragm to fully release. Staci was able to loosen my diaphragm with manual release techniques. When my diaphragm released properly, it was like a magic trick! I would go from having a round pregnant-like stomach to a flat stomach in minutes. I couldn’t believe it!!! I then immediately knew this was the missing piece to the distention and squeezing all along. This was a matter of the body not functioning cohesively.
I went to PT twice a week and then was compliant with our home exercise program which consisted of: diaphragm release techniques, abdomen massages, stretches, foam rolling (for my back), and strengthening exercises on my own multiple times throughout each day. I would work to specifically focus on strengthening my lower core, obliques, and upper back. In the morning upon waking, after meals, and if I remained sedentary for too long were the main factors that increased the abdominal tightness and squeezing (in my rib cage and lower core area), so I did have to continually implement the techniques I learned in PT to manage my diaphragm throughout the day. I would spend a lot of time practicing breathing with a focus on expanding my rib cage, rather than breathing to expand my belly or shallow chest breaths. In the past doctors would often recommend the relaxation breathing technique of expanding the abdomen and filling it with air on inhale, and then feeling the abdomen retract on the exhale. Personally, this type of breathing actually made my symptoms worse because it further reinforced the pattern of my abdominals over expanding instead of contracting to compensate for the diaphragm getting stuck and pushing down on my abdominal wall.
It took awhile for my diaphragm and core to learn how and get used to functioning in a “new” way. Normally the diaphragm releases, the core maintains contraction, and the pelvic floor relaxes. For those with APD and PFD the diaphragm is stuck in contraction which forces the abdominals to relax causing the distention. The pelvic floor also contracts when it is supposed to relax causing constipation. When I first started PT my stomach would often, as I call it “pop”, go back to bulging and wasn’t able to keep the proper neuromuscular pattern. Sometimes within 15 minutes of leaving PT my abdomen would return to bulging. After several months my stomach began to hold for a day before it would pop, then a couple days, in late July 2019 in held flat for a week! The diaphragm just slowly started staying and holding the correct position for longer increments of time as we continued our sessions reminding it of what it was supposed to do. There would be periods of “setbacks” where my body didn’t always respond in the way I hoped it would, but I knew it was overall slowly moving in the right direction so I felt hopeful! At just about a year into PT in March 2020, I stopped having the daily extreme pregnant looking distention all together.
Staci helped me address all the ways I was compensating from living in this dysfunctional way with APD for so many years. She would put two pieces of Kinesio-tape from my ribcage down to my hip bones. The tape would act as a cue to help remind me to stand properly and try to maintain my lower core engagement (when we were able to get my diaphragm to release) rather than giving into the urge to relax my lower core muscles as they were so used to naturally doing. I would wear the tape around in my daily life often. My normal posture inclination was to lean back, standing up straight felt like I was leaning very far forward. I had to learn how to stand in proper alignment. As we were able to start getting my diaphragm to release, I had to relearn how it felt to engage my core muscles properly. Especially early in the PT process, my core muscles would tremble and shake, and feel weak because they were not used to being able to fully contract. It felt like a whole new way of existing. I had to go back to the basics and slowly build my core strength and learn how to move utilizing my newly capable core rather than compensating and using other muscles. For years my upper back and neck were chronically very tight and caused me a lot of daily pain and headaches from which we believe were partly due to the fall out of compensating for so long and having the diagram tightness. Staci works on rehabilitating my back and neck muscles so this way they are able to release, gain more mobility, and be able to handle a fuller range of motion. My headaches and constant neck pain have improved dramatically.
I have always been an active person, exercise has really helped me especially since becoming chronically ill in 2012. Even though working out when feeling sick can feel very counterintuitive at times, I’ve always believed in consistent movement and the importance of keeping my body as strong as possible to give it the best chance at recovering. I am a dancer so personally, exercise was key for my APD recovery. I make a point to do some form of movement along with my PT exercises everyday otherwise I’d feel an increase in tightness in my abdomen. Dance classes along with pilates, yoga, strength training, and HIIT workouts helped me tremendously with keeping the diaphragm from tightening and retraining the core engagement. Although I learned I have to avoid crunches and upper abdominal contracting motions often seen in Pilates (when in craniocervical flexion when lying supine position). These crunching type motions irritated my diaphragm and would cause an increase in the squeezing sensations which would then at times even lead to my abdomen going back to bulging. Alongside eating very clean, I have small nutrient dense meals throughout the day (combination of solid food and soft foods) with a lot of hydration. Large meals can really irritate and cause squeezing sensations and a lot of pressure around my stomach area. Before starting PT, I used to eat just to get it over with. I am now working to practice eating more mindfully by eating slowly and chewing more fully. Mindful eating helps me better manage the pain around my rib cage that comes from eating.
And here I am today! No more wearing XXL tees to hide my distention. No more excruciating pain everyday from wearing sports bras. No more planning my days around getting my daily to do list done before the distention and discomfort and back pain becomes too much to bear. My abdomen no longer gets filled with large amounts of excess air. Eating, drinking water, breathing, feels so much better. My GI motility rate is also significantly better compared to a few years ago! And I even burp now, for years I never burped. Before PT, everyday I used to dread eating food and even just drinking water and my low back was always in terrible pain from the distention. My low back pain is gone. I no longer struggle with constipation. I go to the bathroom fully everyday and I don’t use any laxatives! I am in complete awe of my progress. My daily quality of life has completely changed. I continue to go to PT twice a week and do all the work outside of the sessions everyday since the muscles still get tight and I get some bloating and air.
My abdomen still gets a little more distended at times than the average person but I am able to help it by implementing my PT techniques to help the muscles to relax. Overall my stomach does stay consistent with my flat stomach ‘after picture’. Since I had APD untreated for so many years I knew I had to be patient, consistent, and dedicated to this process for the long haul. I made a promise to myself to give this rehabilitation my all. I did my best to look past the hard days and focus on the big picture and being positive and seeing the promise in every small improvement. I am committed to treating this as long as it takes. Based on my current progress I believe it will just keep getting increasingly better and I will eventually be pain free and healed as I continue my daily practices.
My diet in between these before/after photos did not change at all! Exercise and dancing feels so much more free now that I can fully engage my core correctly. I look back and can now realize why there always felt like a disconnect from what my body was doing versus what I deep down knew it was capable of doing. It feels like huge missing pieces have finally clicked and I understand why so many aspects of dancing and workouts were such a struggle. I am continuing to learn how to move while maintaining core engagement and I feel stronger than ever. It's truly unbelievable the difference I feel! I couldn’t believe how much daily pain and discomfort I had lived with and normalized.
After eight years I had my breakthrough! So many doctors gave up on figuring this out, but I’m so glad I never gave up when in my gut I always knew there had to be an explanation and a solution. I hope my account helps bring more understanding to the hurdles people with these types of conditions often face everyday. I went to such great lengths to hide my struggles and my stomach distention in my daily life. I forced myself to push through life, and tried my best to cope and be positive. But it was miserable everyday consistently being in physical pain and extreme discomfort. I forgot what it felt like to feel pain free. It got to the point where for years I didn't know any different than to be in discomfort. I gave it my all to try and rise above and manage but my symptoms dictated a lot of aspects of my life. It felt like a never ending nightmare. This was not something that would have gone away on its own and no doctor was specifically addressing treating APD. If it hadn’t been for me pushing and questioning all this time it’s likely I would have continued on with this for years when it was treatable all along. I am very grateful and feel so lucky that I happened to have a consultation with a GI doctor who knew I could go to PT for APD and knew where to send me.
It should be noted that APD and PFD are only one aspect of my long and complicated medical journey. I am diagnosed (by the Mayo Clinic) with Dysautonomia -specifically Autoimmune Autonomic Ganglionopathy which causes a whole host of other symptoms and problems I’m currently still working through. My body has been through a lot over the years. At times I have felt discouraged and concerned about how sick and physically weak I have been. While I always wanted to be hopeful, a part of me wondered if it was realistic or even possible to truly feel better after consistently struggling for such a long period of time. My comeback with APD reminded, reassured, and helped me to realize that given the right treatment, the human body can be very resilient, capable, and strong and it is possible to make big recoveries from complex health adversities.
My APD breakthrough was backed by a lot of consistent hard work, patience, optimism, and belief. It feels like a miracle and the greatest gift I could ever have hoped for. Much of my health journey over the years I have often kept private. But I want to be more vulnerable about my experiences because we all have insecurities with our bodies and I think it is important to talk about these things, it is nothing to be ashamed of. After so many years of hardship with this, I knew I would find freedom in having the courage to own my story and all its truths. APD is slowly becoming more recognized but there is still a lot to be learned about it. I want to share my story because I know there are many people like me out there with this being misdiagnosed or don’t know that there is treatment for APD. I think it is also very important that Pelvic Floor Dysfunction is talked about more freely, because it is something many people struggle with. I don’t want patients to feel alone or self conscious so that was a big reason why I decided to share my story. I first googled Abdomino Phrenic Dyssynergia back in 2014 and hardly anything came up about it. I am writing the article that I wish had popped up. Learning about someone else’s experience and perspective would have given me a direction to look into and potentially saved me many years of daily suffering. For anyone going through this, there is hope and it is not too late! I know it can feel defeating going through all this but keep searching for answers!
Lastly I want to say a big thank you to Zion PT for helping me share my story. Thank you to my physical therapist Staci!!!! I am forever incredibly grateful to Staci for believing and inspiring me, and for changing my life.
Written by Jordan C.
If you are dealing with symptoms like this, come see one of the pelvic floor specialists at Zion Physical Therapy so we can help get you back on track to living life the way you want to!
Phone: 212-353-8693 • Fax: 347-507-5510 • Office Email: frontdesk@zionpt.com
