MCAS treatment eliminated my hEDS symptoms

Keeya running, skating and playing pickleball

“What did you do?” ask the ER nurse, rolling me into an exam room.

“Exist,” I wanted to say.

How could I explain my foot had randomly subluxated while I was making dinner? One minute it was functional, the next a joint had slipped in the middle of my foot. When I stepped down, the uncomfortable protrusion inside my foot radiated pain. After 5 years of walking to the ER with kidney stones, a CSF leak, and mast cell reactions, I had been forced to ask my neighbor for a ride.

“What did you do?” asked the ER doctor, examining my right foot.

Okay, I knew what “I did.” The day before I decided to dust off my recumbent bike and begin training for the AKC National Agility Championship. Unsurprisingly, two minutes into moderate pedaling, my mast cells threatened to suffocate me. My foot joint had become unstable from pedaling the night before.

“Why do you think it’s dislocated?” the ER doctor asked.

“Subluxated,” I corrected him. “Because I have EDS.” 

It’s embarrassing, as a writer, to be unable to effectively describe a subluxation. It just feels wrong, followed by an intrinsic desire to push on it until it feels right again. Before surrendering myself to the ER, I desperately bounced on my foot, hoping for a gratifying pop. Instead, I collapsed on the floor in tears. A bruised egg had formed on the top of my foot. 

“We’ll get an X-ray,” the ER doctor said predictably. 

I knew there was nothing the emergency room could do for me unless I had a fully dislocated joint, and quite frankly, I wouldn’t want a random ER doctor manipulating my bone back into the socket. However, I also couldn’t walk anymore or take care of myself alone in my condo. Friends and family wouldn’t understand if I didn’t try to seek help. Like so many times before, I prayed my problem would be caught by imaging.

Not only did my subluxation not show on the X-rays, but the technician asked how I should position my foot for the imaging. God forbid, I’ve spent the last six years so focused on MCAS, I neglected to learn how to image joints. I knew if there was any chance at catching this subluxation, I would need to be standing, but I didn’t have the energy to suggest this.

“The x-ray didn’t show a dislocation. It’s most likely sprained,” concluded the ER doctor.

“What about a subluxation?” I asked. Sprains are also common with hEDS, but they sear, throb, and shoot pain up and down limbs. This mostly felt a foreign object lodged in the middle of my foot.  

“Well the x-ray didn’t show a dislocation, so that’s unlikely,” he said.

“Even for an hEDS patient?” I asked. I have asked this question before. 

“Sprains are the most common foot injuries,” he said, backing towards the door and ignoring my question just like the ER doctor I saw when I had a CSF leak. For four months, I shook with pain, vomited and blacked out, while doctors argued CSF leaks were rare. They are not rare with hEDS.

Two fears consumed me as I waited for my ride home. First, I was at the mercy of this joint. What if it never popped back on its own? How would I get around? Who could I trust to try to pop it back in and how much would it hurt? 

The second fear had been building for a while. My subluxations and hEDS complications were getting more severe and frequent every month. Thanks to my CSF leak, I was afraid of sneezing and pooping. Now, I had to worry my leg might pop off like that of a Whole Foods’ rotisserie chicken.

Before I was diagnosed with MCAS, the inflammation in my hips became so bad I lost my ability to walk for several weeks. After diagnosis, I developed costochondritis, inflammation of the cartilage in the rib cage. In addition to feeling like I was constantly having a heart attack, my ribs began subluxing so easily I couldn’t wear a bra or sleep on my side. Fortunately, an increase in dose of basic MCAS medication resolved both problems.

Now, five years into my MCAS journey, my right hip was subluxing twice a week on short walks with my dogs. It seemed every time my mast cells seemed stable enough for me to move, I sprained a ligament or strained a tendon. Not only did MCAS limit the foods I could eat, but my joints limited what I could buy and carry into my condo, even with disability parking. I gave up on stairs completely after several dangerous falls. My Invitae test for genes associated with Ehlers-Danlos syndrome was negative. I didn’t quite meet the Beighton criteria, but my CSF leak and other joints earned me an hEDS diagnosis. (Until remission, I repressed many memories of my childhood injuries.)

I wasn’t a ballerina or a circus performer, but I did stand on street corner of the hospital and shoot spinal fluid into my ear. 

I scheduled an appointment with an orthopedist for my foot subluxation without any hope that they could help me. I hopped on one foot out of my pajama pants and into my joggers. As I bent to pull up the waistband, I lost my balance and slammed my injured foot onto the bathroom tile.

POP.

It felt so good and sounded so terrible. For once in my life, I was truly thankful for dysautonomia. 


Five days after I realized I was in remission, Sancho and I boarded on a plane to Florida. I was intoxicated by freedom and ready to chase adventure.

“Don’t fuck this up,” warned my conscience.

A lot of hope was riding on my recovery and I still didn’t understand what made my joints unstable. I assumed my connective tissue had not changed overnight. Just six months before, I needed my best friend to help me through the airport and I still almost passed out. I couldn’t carry my luggage without subluxing my arms or hip. I warned myself that I would need to pace myself and slowly build strength to support my joints. 

But then, I arrived at the beach, got upgraded to a luxury room, watched a pink moon rise over the ocean, and lost all self control. Sunburned and hungover, I spent the morning walking in the sand and wrestling with waves, as Sancho worried about my new behavior. When the trip was over, I stuffed 10 sundresses, 2 swimsuits, 5 pairs of shoes, several books I did not touch (and would not for many months), and two laptops into my bags, and exited the hotel feeling stronger than ever.

When I got home, I took up pickleball and biking, proudly loading my bike into my car (usually after brandishing it above my head first for good measure). Swimming in endorphins, but free of injury, I proceeded to kayak, paddleboard, take barre classes, and train for a 5K. I should have absolutely should have been injured by now. I had gone from very restricted exercise for 6 years to daily–sometimes twice daily– exercise, including high impact sports, in one week. My worst complaint was blisters from running. It felt like a switch had been flipped and now my joints were stable. 

So, naturally I signed up for surf lessons. I figured I’d struggle to carry the board and stand up when I caught a wave. No. The real struggle is the brutal ocean beating you get trying to paddle out to catch a wave. On the beach, the instructor taught me how to grip my board and baby cobra as I hit a wave head on. As a Minnesotan, I didn’t really envision how waves work. Just as soon as the wave launched me into the air, to my horror, it disappeared below me. I free fell for five feet, belly flopping against my board as it hit the ocean. 

I took a deep breath and yelled, “I still have ribs!” 

Surfing was one the best and most exhilarating experiences of my life. I certainly was sore and had a few bruises, but no subluxations or other injuries. 

In October, when I told the figure skate salespeople I planned on skating 2-3 times per week, I was purely lying. I wasn’t sure my feet would even tolerate skates, but I had to justify paying hundreds of dollars for a sport I didn’t even know if I could do. 

As a child, I dreamed of competing in figure skating, but I kept getting injured. No one understood my injuries, so they questioned if I was faking them. X-rays didn’t show any broken bones, so they diagnosed me with sprains. Instructors told me skaters are supposed to be uncomfortable, so I thought numbness was normal. At age 13, the pain forced me to quit skating. I believed it was entirely my fault. 

Not only can I skate now, but I’m absolutely in love with it. I flail my body across ice 4 times a week without injuries. Despite a lifetime of poor proprioception, I now jump and spin on knives. My body is the strongest it’s ever been. I still have hypermobile joints, but they do not sublux or scream with pain. Thanks to supportive boots and custom insoles, my feet are painless. On the ice, I’m surrounded by other people with hypermobility that help me find ways to support my individual bodies’ needs.   


If you hunt around Twitter, you’ll find researchers and patients theorizing about mast cells causing connective tissue disorder. Dr. Theoharides often describes tryptase, one of many mast cell mediators, as a “meat tenderizer“ within the body. In a 2021 article, Dr. Afrin states, “Although hEDS is seen in only a minority of MCAS cases, limited studies have identified an association between hEDS and MCAS, fueling speculation that certain variants of MCAS may drive hEDS.” 

In Italy, researchers are studying doxycycline’s effects on hEDS, but I know there’s so much more to investigate than fibroblasts. When combined with basic MCAS medications, doxycycline eliminated my chemical sensitivity, dysautonomia, AND hEDS symptoms. While I understand these conditions are extremely complicated to study, the siloed approach to MCAS, EDS, and dysautonomia is not serving patients.

I highly recommend patients with hEDS learn about MCAS. One of my pet peeves is when patients blame common MCAS symptoms solely on hEDS. We have a lot to learn about both conditions, but we do know many of the adverse effects of excessive mast cell chemicals, for example, prostaglandins can cause inflammation and severe fatigue, while heparin can cause easy bruising and bleeding. There are many treatment options to inhibit these chemicals.

It’s also hard for me to believe it’s just a coincidence that both MCAS and hEDS symptoms often get worse at the onset of menstruation. Natural hormone changes are known to activate mast cells, even in healthy people. Again, MCAS treatment can help decrease symptoms and complications triggered by hormones. 

I am living proof we need research on the link between MCAS and hEDS. I truly believe my CSF leak, subluxations, and other damage to my body could have been avoided if I had adequate MCAS treatment sooner. 

Meanwhile, as we wait for research to explain my new reality, I couldn’t be more excited to shift my focus from MCAS, hEDS, and POTS to loop, lutz, and axel. 


P.S. An October 2021 Russian study of figure skaters concluded that successful figure skaters were associated with the AMPD1, COL1A1, COL5A1 genes. Past research has confirmed COL5A1 and COL5A2 “are the major, if not the only, genes involved in classic Ehlers-Danlos syndrome (cEDS).” Luckily, as an hEDS patient, I have no aspirations of becoming a Russian Olympian. 


P.P.S. Struggling to get your doctors to help you with these complicated health conditions and work with your other specialists? Check out my course with Dr. Linda Bluestein, Maximizing Your Medical Appointments

I really wish this course had been written years ago. I believe the approach explained here would have saved me a lot of tears at doctor appointments trying to explain my whole range of symptoms effectively.  This course is essential for anyone living with a chronic illness who wants to communicate with their medical provider in a way that is really heard, professional and understood.  Hugely beneficial and very much needed – thank you.”
– Jeannie Di Bon, MA PMA-CPT, Movement Therapist and Hypermobility Specialist

Restless in remission

Keeya standing on a paddleboard making the peace sign

You know that feeling when you decide you’re ready to be discharged from the hospital? Like you’re thankful for all everyone has done, but you’re about to rip out your IV and get the hell out of there? As the nurses finalize the paperwork, you’re sitting on the very edge of the bed, next to your packed bag, prioritizing your to do list. 

It’s been two months since I went into remission from mast cell activation syndrome (MCAS) and I wake up every morning ready to burst out of my condo. When I started this blog, I worried that I would not be able to write posts regularly because of chronic illness. Ironically, writing during remission feels impossible. After spending five years in pain and isolation, I’m not interested in sitting still.

Of course, I never imagined MCAS remission was a possibility for me. I had heard about it, but knew it was rare. Remission doesn’t mean I don’t have MCAS anymore. It means I don’t have the symptoms of MCAS on my current treatment. Please read my tick saga if you haven’t already to learn about how I went into remission and my current treatment.

Since MCAS remission, I have also stopped my dysautonomia medication and my dysautonomia symptoms have disappeared. My resting heart rate has gone from 81 bpm to 69 bpm! I am more active than ever, yet I have not had a single EDS-related injury or subluxation. Before remission, I experienced subluxations about every three days from walking. Clearly, mast cells impact our nervous systems and connective tissues. I hope my remission will encourage more dysautonomia (e.g. POTS) and Ehlers-Danlos syndrome patients to pursue MCAS testing and evaluation.

Everything is brighter, happier, and more amazing. Not only can I do all the things and eat all the things, but I am raving like a kid, soaking in every experience. I am overwhelmed, overjoyed, and a little lost. For the last five years, every hour was dictated by mast cell disease. There were so many rules, many of them conflicting. I had whittled my life to a strict regime dictated by pain, not joy.

I have been so isolated for so long that I just want to scream, “WHAT ARE MY CHOICES?”

In actuality, when I went to the grocery store and faced all the choices, I grabbed avocados, pasta sauce, and ice cream, before running out to avoid a panic attack. I can eat anything I want without rescue medication or feeling like I’m going to birth a demon, but I’ve also learned drinking four margaritas or eating an entire bag of sour cream and onion chips doesn’t make me feel great either. 

My favorite food is cherry tomatoes. I still hide in the corner on my kitchen and binge entire packages like I’m about to get in trouble. Before remission, I would have barfed before getting the second tomato in my mouth, because of histamine. Yet, my stomach pain has disappeared, and I have tapered of Prilosec completely. (Just 8 months ago, I had an endoscopy that showed inflammation and the gastroenterologist said there was nothing more he could do for me.)

Keeya and a big sandwich
I became vegetarian shortly after this sandwich. HA. Part of my spontaneous Florida vacation.

Every day I seek a new adventure. I assumed my muscles would be atrophied from five years of disability, but it appears they mostly just lacked oxygen. I rarely get sore afterwards. I don’t have to worry about one minute of sun or heat making me swell and vomit for the next 24 hours. I have paddled, floated, and swum in lakes, rivers, pools, and the ocean. My daily step average went from 5k to 15k. My cross-training includes weekly running, pickleball, and paddleboard. My lungs have never felt this clear; I have struggled with asthma my entire life. My worst injury has been blisters.

How remission how impacted my ability to compete in agility outdoors

See more photos and videos of my adventures on Instagram.

Several people have asked if I worry about remission ending. I don’t. The end of remission would probably be soul-crushing. No one knows how or when anyone’s MCAS baseline will change or if treatments will stop working. I am still susceptible to trauma, infections, stress, and so many other immune system triggers. Everyone is. But I know I can handle it. 

Fear limits our joy. (And is terrible for our nervous systems.) I have been given an incredible opportunity to experience the world in a way most people cannot appreciate. My gratitude neutralizes any bubbling fears. I’m too busy yelling, “I can see fish!” from my paddleboard.

Take that dysautonomia! Standing alone used to be a nightmare due to dysautonomia.

Related posts

It’s really hard to summarize how extensively MCAS, dysautonomia, and Ehler-Danlos syndrome controlled my life before remission, but here are some old posts and an article to provide perspective.

How I exercise with MCAS, EDS, and dysautonomia

Toy poodle Quixote runs through agility tunnel

What if I told you that I get up early most weekends… to compete… athletically… in front of lots of people?

While many people would be horrified by this combination alone, don’t forget my physical disabilities and history of exercise-induced anaphylaxis!

Let me back up to 2017, when I canceled my gym membership due to dysautonomia, subluxations, and life-threatening mast cell reactions. 

I wasn’t completely honest. I didn’t cancel all my gym memberships. 

You see I’m part of an athletic team, and while I canceled my personal membership, I couldn’t bear to abandon my teammate.

My 10-pound toy poodle, Quixote. 

Toy poodle Quixote in snow

One night in 2014, before my diagnoses, when Quixote was 5-years-old and interrupting my reading because he never learned to play quietly with his younger brother like I hoped, I signed him up for an agility class. Attracted by the bright obstacles and potential bragging rights, agility had always interested me. Quixote had crushed his puppy class, choreographing his own circus routine for anyone with treats. I didn’t know what agility training actually entailed, but I decided my poodle would likely be the best. 

Quixote absolutely loved class. Why wouldn’t he? The first few months consisted of showering him with meat, cheese, and praise any time he did an obstacle. When it wasn’t his turn, Quixote wooed my classmates into giving him more treats and praise. 

As Quixote’s confidence on the equipment increased, agility training essentially became human training. I significantly underestimated the mental and physical precision required to direct a four-legged beast through an agility course at full speed. I had to learn the footwork, arm movements, and timing of commands. Every time we missed an obstacle, the instructor pointed out how it was my fault and Quixote howled in agreement. Nobody showered me with treats.

As the months passed, Quixote ran harder and faster, but my body did not get stronger. My muscles felt heavy with weakness, and my lungs burned as I tried to shout the commands. My heart distracted me with its pounding. I joked to my friends that I must be allergic to exercise. Unfortunately, there was much more than a grain of truth in that joke. 

By the time I was diagnosed with mast cell activation syndrome (MCAS), I could barely walk across my condo without passing out or throwing up. All types of food induced terrifying asthma attacks. My skin and joints were so inflamed that I cried getting dressed for work each morning. 

Quixote didn’t care. When I couldn’t take him outside for walks or throw his ball, he hopped onto the tallest furniture and whined his grievances, throwing in an occasional growl. I had created an exercise monster. Eventually I couldn’t handle the anger of both my body and my poodle, so kept taking Quixote to class as much as possible. 

By the time I reached my disability parking spot at the agility gym, the screams of my body were often muffled by the squeals of my poodle. Once inside, Quixote bounced around the gym as if it were the greatest place on Earth. When it was our turn, I used every bit of energy to play with my poodle. My timing was usually off and afterwards I usually collapsed in pain and wheezing, but seeing Quixote happy made me happy. Although recovering from class required several days of laying on the couch, rest became much more bearable when I replayed his agility highlights in my head or on my phone. 

The pain didn’t scare me as much as the mast cell reactions. As I began to experience throat swelling and air hunger, I searched for a definitive guide. For the most part, all I found were basic medical liability disclaimers. I felt silly seeking validation for a hobby that made me sick, but I had already lost so much: foods, friends, and basic abilities. 

One day, a specialist said, “Sometimes we do things that make us feel sick in the short term, so we can feel better in the long term.”

There was no promise that I wouldn’t have anaphylaxis or need an ambulance, but my doctor urged me to continue with agility. I decided I was willing to risk having acute reactions for my long term wellbeing. Luckily, my instructor and agility friends were willing to support me and learn my emergency protocol.

With the help of daily meds and premedication (yes, I took 50mg of Benadryl to exercise), I began to see the advantages of agility for MCAS, EDS, and dysautonomia. First, people rarely wear fragrance to run with their dogs. Even in the rare event of perfume, the agility gyms have high ceilings and lots of space, meaning good airflow. I’m also lucky that I live in Minnesota where dogs train indoors, so I can avoid the sun and heat. Although I still worry about falling, the foam floor mats are safer than most surfaces.

I noticed that walking the courses for five minutes was much harder than running the course for one minute. Dysautonomia can cause dysfunction of the nervous system when standing–in other words, it can make you feel like you’re going to throw up, pass out, and piss yourself at the same time. I realized, during my timed runs, my competitive focus and adrenaline allowed me to briefly transcend my symptoms. Oftentimes I would skip the course walkthroughs and dedicate all my energy and adrenaline to one smashing run. At the end, I would yell, “One run and done!” knowing there was no way my body could do it a second time.

I worked with the instructor to find alternative techniques to accommodate my dizziness, pain, and muscle weakness. I relied less and less on rescue medication as I recognized my body’s limits and warning signs. On the hardest days, I sat and watched, while my friends ran Quixote for me. (He loves agility so much that he didn’t even turn back to look at me!) Through agility, I learned the needs of my disease and how to take care of my body.

Soon enough, Quixote and I began connecting as a team and crushing courses in our own way. Our runs usually lasted less than a minute, but for that brief period of determination, I forgot my illness and pain. Agility became my medicine.

So instead of quitting agility, I signed up for my first competition.

To be continued…

Toy poodle Quixote in agility weave poles
Quixote crushing the weave poles.

In the meantime, here are the details of why agility works for me.

My circuit workout

  • 2 days without exercise or leaving my condo 
  • 3 minutes of walking the course (if I feel like it)
  • 20 minutes of sitting
  • 2 minutes of running
  • 30 minutes of sitting
  • 2 minutes of running (maybe)
  • 2 hours or more of sleeping
  • 2 days without exercise or leaving my condo 

Advantages of dog agility for MCAS, EDS, and dysautonomia

  • High ceilings and lots of space = better air quality (MCAS)
  • Less perfume (MCAS)
  • Short exercise intervals (MCAS, EDS and dysautonomia)
  • Floor mats to lessen impact (EDS and dysautonomia)
  • Supportive environment (everyone needs this, but especially people with disabilities)

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Header image credit: Great Dane Photos