Hi! My name is Crystal Bradley, and I am a regulatory chemist by trade, although I am on medical leave currently. I love all things science, particularly the natural aspects! I love the outdoors, art (often natural itself), animals, and of course, sharing it with my loved ones. I am unfortunately affected by lesser-known spinal manifestations in connective tissue disorders and really would like to raise awareness.
5 Invisible Symptoms
- Upper Cervical Instability causing neurological Impairment. This is likely causing many other symptoms, but few providers are aware of this condition or the treatment for it, and the handful in the world who can provide treatment have very long waiting lists. This was completely invisible until the neck brace got added late this year, and then full-time last month.
- Postural Orthostatic Tachycardia Syndrome (POTS) and associated Dysautonomia. In other words, my body likes to quite literally “drop it when it’s hot” (or just standing still too long). Along with this, blood doesn’t flow properly in my body affecting cognition and digestion.
- Mast Cell Activation Syndrome (MCAS). Hives and rashes everywhere from everything!
- Costochondritis from my subluxing ribs.
- Swallowing Dysfunction. This is a neurological symptom but has caused me to struggle to maintain a nutritious diet or drink enough fluids due to difficulty eating and drinking.
4 Things That Help Me Manage Pain
Most of us have struggled to get pain managed to a workable point, but I wanted to be transparent that I am still on my journey to find the right options for relief for me.
- Natural/alternative therapies like cannabinoids or topicals like Biofreeze.
- Meditation and Breathwork. This is huge for me to regulate myself and “hack” the Vagus nerve.
- Motion is lotion! I don’t move a ton, but frequent position changes and isometrics have been so big as well!
- Emergency medications. Because let’s be honest, life happens and sometimes they’re needed.
3 Ways My Life Has Changed
- I used to be active, I felt strong. I now have to show appreciation for my body doing very different things. I was a dancer for most of my childhood until I had to stop for pain and difficulty with injuries that kept me from being able to keep up in my dance classes. I would have bilateral bunionectomies that failed the year after, which are still not fixed. Even so, I went on to hike and be a park ranger with the national parks. The cumulative toll of having been undiagnosed for a chronic illness and also traumatized from other mis-happenings in life, sent me into a period of focusing on my health and wellness where I felt like I lost myself, but most importantly I felt like I couldn’t trust my body. Through careful work in psychological therapy, in physical therapy, and, most importantly, in accessing the healthcare I needed, I’ve learned to have more faith and trust in my body, especially to heal, as long as I actually listen to my body.
- I used to be social. I was always extremely drawn to being social. It wasn’t until bullying created shame around who I was, the fragile girl who must have just wanted attention for all of those medical problems (right?) that I really withdrew in my childhood. I decided college wasn’t going to be that way for me, so I pretended everything was perfectly normal and fine, hiding what I now know were obvious signs something was wrong, until that same period when I really started focusing on my health and wellness. During my facade, I struggled deeply, all while presenting like a typical sorority girl at an SEC school. When I first started being transparent about my struggles, I found my days and nights were more silent than they had ever been. Many of my old friends still do not speak to me today. I have, on the other hand, truly found the greatest group of individuals I could have ever been blessed with over the past year or so through support groups and social media like TikTok. Even though my mobility is limited right now, making me often physically isolated, I still feel the most supported that I have ever felt. We are not alone and so much stronger together. Never be afraid to reach out. Being social doesn’t have to match society’s standards.
- I used to be successful; society’s idea of it at least. I worked hard to get a degree, to live on my own, to get out of a small stagnant rural town and move to a big city. I even got a cute dog and settled down with the love of my life. I did it. I worked to get a job with one of the leading companies in the industry and got to be a real-life scientist living with my boyfriend and dog, until my health required me to go on medical leave while waiting bed ridden for neurosurgery consults on my spine. On paper before then, I was living the dream. In reality I was dragging my body through damage to do things that were too much for my health. I didn’t know how to ask for help. Success looks a lot different now, I have learned to gauge it on much different things than what society once convinced me was success, although I still find massive joy in my partner and our dog. I know how to ask for help, persist despite it all, and hold on to hope in dark, scary times. I know how to care for myself and others in a way that I had not known yet.
**I said “I used to…” for each of my statements because that is how it may seem on the surface, but I was and I still am, just in different ways.
2 People Who Inspire Me
- All of the people living with disabilities who carry on and are wonderful people despite it all. There are too many to name individually, but each person’s journey and vulnerability in sharing with me to find support in one another is the most beautiful inspiration that truly keeps me going every day. Also, all of the researchers, doctors, advocates, and other patients, just trying to help, all with the same disorders they’re targeting. The fight in you all ignites one in me.
- On a similar note, all of the people struggling through any of life’s hardships with trauma intertwined in their family and childhood. Breaking generational cycles and healing is hard, but what comes after is such a hard won and beautiful canvas of life. You all truly pushed me to never give up no matter how dark it gets. You all are why I know that people can make a difference if they just take the time to figure out what that difference could be.
1 Thing You Want People to Know
I want you to know what the spinal manifestations of connective tissue disorders are! And to know that these spinal manifestations and connective tissue disorders exist in general, which is something myself and my doctors had no clue about until around July this year.
Here’s why–sorry it’s long, but I promise it is worth the read, and it could save a life, literally–I was undiagnosed for the connective tissue disorder I have until July of this year, but had some pretty gnarly neck pain and radiculopathy start after a really aggressive deep tissue massage that I had been getting to help with general back and neck pain, and migraines. I saw an orthopedist surgeon who mentioned that I, “looked like I might have Marfan’s” and brushed it off because, to him, I did not meet criteria after a 5 second poke at my pointer finger. He then proceeded to tell me I had standard disc herniations and to do physical therapy. I was 23.
Because I was not properly diagnosed for the connective tissue disorder, or for the condition of my neck, I did PT for 4 months for the wrong diagnosis, using (what I know now to be) harmful techniques and exercises for a severely unstable cervical spine. Because ligament laxity was not considered in PT, I was pushed too far, too fast, which caused me to collapse, and no one could figure out why. I finally saw a rheumatologist who thankfully recognized that I had a connective tissue disorder immediately and got me set up with an amazing geneticist. I thought I was safe to continue PT knowing this. We toned what I was doing down, but I still began to decline severely and could no longer work or do basic care tasks without syncope and GI dysfunction. I discovered that I had also been living with mild dysautonomia, which that had worsened during PT.
I began reaching out to support groups for help, knowing I at least had a connective tissue disorder, but had no idea that my life had already changed, likely at birth. It turns out that in connective tissue disorders, spinal instability is more likely to occur due to ligament laxity in the spine. I unfortunately have also suffered quite extensive and severe repeated head injuries at a very young age that has likely contributed to my case as well.
Spinal instability causes different symptoms in everyone depending on what is unstable but, in my case, I have neurological symptoms that look like radiculopathy, weakness, vision/hearing dysfunction, numbness, dysautonomia, vomiting, and choking/dysphagia. In milder cases (which I had back in May), physical therapy is the golden standard for relief BUT it needs to be with an instability/hypermobility aware PT for the correct condition. In more severe cases, which is where I am now, surgical intervention is likely necessary but highly experimental, and there are only a few providers who are knowledgeable. The wait lists for these providers are often a year or more. While I am hopeful and thankful that I am on the right track now, I do hope to raise awareness and increase early and adequate intervention for spinal manifestations of connective tissue disorders so hopefully there can be less people in situations like mine.