My body does not work as well as my nervous system now does

For a long time, it felt like someone had taken a beat up, 1996 Chevy and replaced it with a 1500 horsepower engine but left the body. Yes, I could now go 300 miles per hour now but if I did, the wheels would spin off.

When I first got out of the hospital, I felt like I had more energy than I could ever remember having. Yet, I was so weak and in so much pain, I could barely walk across the room or sit in a chair. For months, I struggled. Then, as the post-surgical swelling subsided, I realized the more I did, the more I could do. First I walked in pools. Then, on dry land. I lifted one pound weights. Then three, then five. Every day, I pushed myself to the limit. At night, I would curl up in bed, exhausted. The next morning, it was like a truck had run me over. I think my muscles were sore for six months straight. But I did not crash. I knew that if I forced myself to get out of bed and move around, I would feel better. Then, I would do it all again. Physical therapy, exercise, and strength training became the center of my recovery. I can now hold a plank for two minutes. I can do thirty squats. I can walk 20,000 steps in a day. Yesterday, I did this “bird dog pose,” ipsilaterally (on the same side) for the first time.

This all would have been impossible when I had ME. In fact, attempting to do even basic, daily activities of living would have crashed me in bed for a month and possibly made me permanently worse. Exercise was poison. But post-surgery, I was no longer an ME patient. I was “simply” a severely deconditioned patient.

Now, the more I do, the better I feel.

Up is up again.

I suspect I have a connective tissue disorder

It is not hypermobile EDS, at least not by any of our past or current standards. (As I have written many times, I do not check a single box on this list.) I would not even call it hypermobility spectrum disorder (HSD). But like many ME patients have reported, I had some significant connective tissue changes after my viral onset. (For one, my nails became ridged and their lunulae disappeared.)

What I and a growing number of people have started to wonder is whether MCAS can cause many of the same complications people with hEDS are at risk to develop, even in those of us without genetic hypermobility, resulting in a distinct but overlapping phenotype? Or, might there be other connective tissue genes at play that are just not as clinically obvious as those that cause hypermobility?

If true, it would mean that while I have made remarkable gains, I can always develop new problems in the future. I am grateful for what I now have, for as long as I have it. I am doing everything I can to stabilize my mast cells, avoid mast cell triggers, and promote healthy collagen metabolism, despite scant evidence and all that is still unknown.

I have had trouble with recurring spinal fluid leaks

My days of hiking the great southwest were cut short after I developed a spinal fluid leak in late August. My physical therapist recommended I start doing daily massage of my tethered cord scar, that 8-inch doozy on my back (I have a much longer than normal scar. In addition to the tethered cord release, my surgeon had to evacuate a hematoma that developed following an earlier blood patch.) Direct massage of the scar immediately caused swelling and neurological symptoms, and triggered a recurrent spinal fluid leak. My neurosurgeon thinks the spinal fluid leak happened because that same part of my spine was found to have diverticula or “blebs.” Blebs are weak spots in the dura, that thick membrane of connective tissue that surrounds the brain and spinal cord. And they have a tendency to leak.

For two and half months, I spent most of my time flat in bed. I leaked and self-patched four times. When I leaked, I would get a headache in the front of my head, feel like I wanted to vomit, and think I was going to pass out. This was due to intracranial hypotension (low pressure in my skull). After 1–2 weeks flat in bed, I would develop wicked rebound hypertension in the form of a pressure headache. Now, I had the inverse problem: I could not tolerate lying in bed. However, if I stood too long or sat in a chair for even a short period of time, I would start leaking, due in part to the rebound pressure, and have to lay flat in bed again. Rinse, repeat.

I finally broke the cycle by taking treatments to bring the rebound pressure down to a manageable level (an herb, actually — Diamox doesn’t really help in my case). I made sure to lay flat for several days after self-patching. Then, very slowly and carefully, I increased the amount of time I spent out of bed. It took a lot of trial and error to get the balance right.

Aftercare and rehabilitation are everything

Well…almost. The most important thing is to find a surgeon who knows what they are doing. Because I got good advice, that was the easy part. Much harder was what came after.

I remember my surgeon telling me the day after my fusion, “50% of your recovery just happened in the operating room. 50% is the work you are going to do over the next year.”

“Great!” I thought. “I’m in. I want to be as well as possible. I’ll do the work!” But no one tells you what that work is supposed to entail, the help you’ll need, or how to find it. I actually don’t think anyone really knows.

Eleven months after surgery, I finally found the right rehabilitative help in the form of a chiropractor who specializes in sports medicine and in particular, helping athletes who have had surgery recover from their injuries. I had avoided going to this clinic, even though it’s not far from my house. The doctor is a serious weightlifter. He’s huge! All the photos on his Yelp page are of him with pro athletes. I thought, “This guy is definitely going to push me too hard. I might get hurt.” Then one day, desperate with back pain, I made an appointment. He ended up being the kindest, gentlest healthcare practitioner I’ve encountered in my life. When we started he was cautious, respectful of my boundaries, and observant of where my body actually is. His practice is a mix of chiropractic, physical therapy, and soft tissue work (e.g., massage, Graston technique). He focused on building up my core strength, which all of the other physical therapists I’ve worked with (and there were many) mostly ignored. He is also working on progressively stretching and reeducating muscles in my hips and legs that had grown too short or stiff from all those years in bed. He’s the reason I can now do planks for minutes, why I can sit in a chair without springing a leak. Without this help, I would still be profoundly debilitated.

I don’t know what comes next

The post-surgery healing is definitely behind me. They told me it would take a year, and it did. But eight years of being bedridden and a wheelchair user? Again, I don’t really have a roadmap. I think it will take another year to fully build up my strength and maximize my recovery. Healing from all this is a long process. And with the surgeries I’ve had and the underlying connective tissue disorder that I might still have, I don’t consider myself out of the woods. I have six screws lodged in my skull and first two vertebrae. I have three laminectomies in my upper lumbar and lower thoracic spine. I will have to strength train for the rest of my life to keep my core strong. I fear what having a fusion and back surgery will be like in old age.

All that, I can deal with.

What I haven’t quite figured out yet is what to do with what remains. One, the emotional trauma. Eight years of ME. Six months of daily, waking apnea and paralysis. It gets better with time but I don’t know if the ground will ever feel solid.

Two, the knowledge that there are a whole lot of other people out there, in this world and in our own community, who suffer from an array of connective tissue disorder-related complications/pathologies (Chiari, craniocervical instability, atlantoaxial instability, cervical stenosis, Eagle’s Syndrome, median arcuate ligament syndrome, the list goes on…), but who cannot access the extensive diagnostic and treatment options I’ve had. Because I live in the United States, where many of the EDS specialist neurosurgeons practice, and my husband works for a large organization that offers exceptional health insurance, all of these diagnostics and surgeries have been almost free.

Three, the knowledge that we aren’t doing nearly enough to define, measure, understand, and ultimately fix this problem. Many clinicians have known about these diagnoses since the 1990s, when the neurosurgery boards issued a moratorium on performing surgery on any patient with a chronic fatigue syndrome or fibromyalgia diagnosis. (Craniocervical instability is the exception. In the context at least of non-traumatic cases, its diagnosis and treatment is still somewhat new.) Maybe they thought surgery was all too serious, all too scary, and far too dangerous for such trivial-seeming illnesses. (Fusion surgery at least is not nearly as dangerous as some think.) Did we miss something big because we were too afraid to look?

I can’t help but wonder what might have happened if we had all collectively stared these pathologies in the face in the 90s. If we had tried to understand the underlying disease process that causes them, named all the risk factors, could we have learned how to prevent or even repair the damage? Would I have ever needed surgery?