Understanding why my symptoms of EDS included breathing problems
A columnist describes her struggles with asthma over the years
I remember wishing the final whistle would just blow. I wasn’t sure how much longer I could force myself to keep running while being unable to breathe.
I’d already run to the sideline for my albuterol inhaler several times, but I was still struggling. It was a big game, the score was close, and we had to hold on until the end. I’ve always been a fierce competitor, so there was no way I was backing down.
When I finally heard the signal that the soccer match was over, I remember collapsing on the ground and getting sick. My chest was heaving, and I felt like I’d never get enough air again. After several more rounds of hitting my inhaler and lying on the ground, my breathing finally began to normalize.
Asthma was my nemesis from about 10 years old to my mid-20s. I had no clue until my Ehlers-Danlos syndrome (EDS) diagnosis that the two were likely connected. Many of us with EDS also have asthma and other complications. The soccer match I described happened when I was about 16, but I wasn’t diagnosed with EDS until I was 22.
Before my diagnosis, I battled sometimes crippling exercise-induced asthma and myriad other injuries I now know were a result of my EDS. While medication helped, I still had asthma flare-ups and attacks almost every time I played, although some days were worse than others.
There were also times when my meds didn’t seem to work. I would be audibly wheezing, but an asthma test on a treadmill that elicited the same symptom didn’t show asthma. So what was going on when that happened? The doctors were stumped.
After my diagnosis, I began physical therapy and massage work. One day, after several biweekly sessions, I rolled over on the massage table after my therapist had worked around my ribs and on my thoracic muscles. I took a deep breath and it felt like my air capacity had doubled. I suddenly realized that the muscles around my rib cage had been tight for so long, and I wondered if they were preventing me from taking full, deep breaths because my rib cage couldn’t fully expand.
After that lightbulb moment, my therapist made it a point to work on those muscles regularly. Since then, while I’ve had an occasional issue with asthma, I haven’t had another episode of wheezing.
There’s no doubt I have asthma, and I’m lucky it has calmed down after I reached adulthood. But I wonder if the extreme tightness of the muscles around my rib cage exacerbated my symptoms when I was younger.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
About the Author
Susan Leibler
You're one of the lucky ones who was able to find out. If I am slumping or slouching on the sofa trying to eat a snack, I quite often can't swallow. I found out my h-EDS causes my esophagus to collapse in on itself, thus closing off the route down my throat. I have experienced a number of other strange symptoms - sometimes I can move my teeth with my tongue or fingers, my neck swivels almost 180 degrees. My shoulders can touch my chin in the front. The bottoms of my feet cannot be walked on, feels as if the bottoms have been pounded on with a hammer. My digestion is a mess, my lower g.i. tract gets so twisted up in itself, that defecating is all but impossible. Every time I wake up in the morning my shoulders are dislocated, although they are easily put back into position. Sometimes I'll turn my head and a hot bolt of lightning strikes my head in the back, and chill-like ripples travel around my scalp. My primary doctor said that's a nerve getting pinched because my neck moves too much. My mitral valve prolapse scares the bejezus out of me more and more often, speeding up, skipping, pausing. This is a lot, and I state all this because it is quickly worsening with age - I was diagnosed at 35, I am now 66. The brain-fog is frustrating, the depression is scary. I have called many hospitals in the US and Europe, and unless there is a very specific study approaching, nobody can/will help us. There aren't enough of us to make it financially beneficial for any scientific organization to do research. I experience many more problems, but too many to go into here. If you are interested in knowing more, whether merely curious or feeling strange things of your own, don't hesitate to contact me. I wish you all well. Susan
Suzi Kaplan Olmsted
I also got similar asthma symptoms from my EDS, but it was mostly caused by GERD/stomach acid from a floppy esophageal sphincter, acid burning up upper respiratory tract. Surgery to tighten the valve eliminated the symptoms for at least a decade - though it seems to be occurring again.
Judee
I have serious infections in my lungs. Serious sinus issues ,rhinitis and they said bronchiectisus. I've had three aorta dissection aorta valve replaced and other valves are in serious condition . I think it has a lot to do with EDS .
saundra
A little background information: My 48yr old daughter and I, both have h-EDS. I'm 75 and was diagnosed just two years ago. Due to lack of insurance, she has yet to be formally diagnosed though she seems to be far worse than me. She has easily subluxated joints, terrible migraines, esophageal and gastro problems A month ago, she fell in the bathroom and lay on the floor for some time with bleeding on the brain before she was found. She was intubated in the ambulance and on respirator for several weeks. Now, she's having trouble swallowing because those esophagus muscles aren't cooperating. They were weak before the accident due to laxity and regular therapy is failing
Daniel
As a kid, I had terrible asthma, and it wasn't until my late 20s that it stabilized. I still struggle at times when my asthma. My chest will tighten up due to what I think is my GERD. At first, I try using my albuterol inhaler, but it doesn't work. Then I'll try my omeperzal, which is minimally successful. I'll take a nebulizer treatment and it helps to a slim degree. my chest will tighten up terribly badly. It feels like a giant heavy object sitting on my chest. Ultimately, it isn't until I make myself a drink of Jack Daniel's and Club Soda and a squeeze of lime that helped ease the tightness. Several times, during adrenal crises' my chest, will tighten up and I'll develop pneumonia or bronchitis. It isn't until 30-60 minutes later that the tightness dissipates and I'm able to breathe easier.