(I like this skirt because it hides that knee brace right now)
I knew something was wrong over the holidays, but didn’t want to admit it to anyone. As I wrote the addresses of our loved ones on the envelopes, my hand would lose grip of the pen, cramp up, and spasm. What should have been a simple task done with joy became something that had to be split up over a week that resulted in embarrassingly scrawled envelopes that I resented. I also resented Tiny Prints for sending no back-up envelopes so I could throw out the really bad ones. I left our return address off, for the first time, because I didn’t want to see those cards again. Feliz Navidad.
A week later as I headed to the grocery store, I put my car into park, and my foot curled in and would not sit flat in its shoe. A painful cramping left me sitting in my car for twenty minutes so I could walk around and get the family groceries. As if I didn’t dread the task of grocery shopping enough, now I could barely make it through the aisles, dragging around this foot and worrying that it would happen again while I was trying to check out or while I was driving.
Then the pain started in my hands in such a debilitating way that I could not even type, shoot a camera, knit, flip a book page without pain, or do any of my usual routines that are expected of me as a mom. Pain shot through my fingers so badly that I sobbed and called my Dad like a little girl again, hysterically sitting in a corner of our bedroom sobbing and wondering why this was happening again when I was doing all the right things with my health.
So You Like Being a Hypochondriac
I was in denial that this was coming back. In college, after a routine dental procedure that went bad (as all procedures with me do), my parents had a battery of tests ran on me that included the usual blood work and more serious tests like a spinal tap for Lyme and MS. Everything came back normal, but I was anything but a normal college student when it came to my health. Muscle cramps, spasms, and numbness plagued me, particularly when I was overworked or tired…and I was constantly tired. I later saw a rheumatologist who gave me the diagnosis of fibromyalgia and treated it with antidepressants that aided in muscle relaxation, but I knew that I had never really been satisfied with that diagnosis.
I could go on and on about all the weird and quirky things in my medical history like being a klutz and chronically tired child covered in self-created bruises from walking into things. Every medical surgery that never went as expected. Weird scarring on my body from things that never healed correctly. A shocking placental abruption with the birth of my child that was like a really bad crime scene in our home. Menstrual bleeding that made me finally seek relief through an ablation procedure (that also went badly). Poor recovery from every routine procedure and struggles with anesthesia. Reacting to all medications. Dental issues and excessive gum bleeding. A recent hearing loss that lasted for months and months and months that threw off my balance. The snap, crackle, and popping of bones shifting each time I would go up the stairs and worries that something was going to pop out with all the sound effects. The stomach issues that plagued me my entire life. Old lady back pain that had me seeking relief at the chiropractor. Constant dislocations of random joints that left me rocking a brace on some joint on my body almost weekly at my gym classes.
I headed to the doctor with my hypochondriac list again and the routine tests were all performed along with an EMG to rule out radial tunnel syndrome. The follow-up visit revealed that, other than a few minor things, all was normal.
“How are your hands and fingers today?”
“Well, they are feeling a little better, but now my knee. My knee is out and it hurts really bad too.”
We had double booked our doctor for the morning and my son sat on the examining table for his routine ADHD follow-up. I requested that while we were here, he take a peek at the poor circulation in his hands. As the doctor began to examine him, Ethan said the magical question that started the ball rolling on the real answers.
“Are you going to ask him about our flexibility, mom?”
“What do you mean?”
“Well, I wonder if he has EDS. I have a friend that was diagnosed and it sounds like us.”
The doctor started giving us The Beighton Score test and we, of course, could do all of this and more. You should see us at parties or just a fun night at our dinner table showing off with our bendy fingers. After we passed this test with flying colors, he pulled my son’s skin on his neck and watched it stretch to an unnatural amount.
“Look at the stretch in his skin.”
“Oh, I think mine is like that too,” and I pulled out skin farther than Ethan’s.
We finally have our answer.
We had Ehlers-Danlos Syndrome.
Oh, and my kid had scoliosis and Raynaud’s syndrome.
And the other one, she should be looked at too since she is bruising all the time and run down.
My head was spinning as I clutched a million handouts, appointments were made, tests duplicated for the specialist, x-rays done…in two hours I felt like our entire life had changed.
What is Ehlers-Danlos Syndrome? And How Quickly Can We Get Over This?
Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders, caused by various defects in the synthesis of collagen. EDS is known to affect men and women of all racial and ethnic backgrounds.
There are six distinct types of EDS currently identified. All share joint laxity, soft skin, easy bruising, and some systemic manifestations. Each type is thought to involve a unique defect in connective tissue, although not all of the genes responsible for causing EDS have been found.
These six types are defined according to the signs and symptoms that are manifested, in a set of major and minor diagnostic criteria for each type. Each type of EDS is a distinct disorder that “runs true” in a family.
Different subtypes of Ehlers-Danlos syndrome are associated with a variety of genetic causes, some of which are inherited and passed on from parent to child. If you have the most common varieties of Ehlers-Danlos syndrome, there’s a 50 percent chance that you’ll pass on the gene to each of your children. Thus, the demonstration made by my crew means that we will all need a diagnosis to see if we all have it.
To receive a formal diagnosis of what type we all have and the treatment required for that type, we have to seek the help of a specialist and one of the leading people in this field just so happens to be rocking a practice in our town. Her research on EDS and how it relates to our GI system really helped to explain why I have had so much relief from removing gluten from my diet, as all of this is connected to our connective tissue. Instinctively, I had been doing many of the recommendations to seek relief for my numerous issues, never knowing how much I had been helping my body. It is probably why I have been doing so well for so long.
Dr. Collins counseled our doctor on the new regime we should follow until we could see her. It involves a really ungodly amount of supplements that should help with joint pain and digestion. You can see her recommendations for diet and supplements that have worked so successfully for many of her patients, diminishing symptoms with this disorder.
Unfortunately, we can’t get over it. It’s something that we will be dealing with our whole lives and that was devastating to me especially in the middle of a bunch of injuires.
We Have Answers And I’m Sad & Still in Pain
I would have loved to skip out of that office with prescriptions for us all and immediate healing to my body. That doesn’t happen though and it takes some time to figure out exactly what will work for me and for our kids.
I have wept more tears than I can count for the pain that I have been in this week and hearing that we have this is heartbreaking for us all. I told my mom yesterday, as she came to be with her weepy daughter, that I could handle all of it if I wasn’t in so much pain with my knees, hands, and fingers. If it would have come when I felt strong and fit, I would have done the whole pull myself up by my bootstraps routine and just killed it like I always do, but right now I feel really broken.
I’m heartbroken our kids may have this and I feel like a crappy mom for passing down such crappy genes.
I’m sad how this has impacted my workout routine of hitting my dance class each week. It was the one class that brought me inexplicable joy and I know that it is the worst thing I can do for my joints right now. I miss the routines and love I get from each of those ladies in that dance crew. They have become like a family to me and I hate not being there.
I can’t knit to curb the stress because of hand pain and the need to brace things to help relieve it.
I’m heartbroken to see my husband so sad and feeling helpless about what is happening to us all. To be honest, that hurts almost worse than the pain.
Silver Lining? Maybe Someday!
I am not in that silver lining stage and I cringe when people try to put a positive spin on this. My body and heart are in terrible pain right now. I guess the silver lining is that it could always be worse and there is always someone suffering and struggling with something bigger than something this minor.
As the four of us curled up on the couch together on Friday night, all on a single couch, I wrapped my two in my arms as tight as I could and alternately kissed each of their heads while we watched an episode of Shark Tank and chatting about if we would invest in people’s inventions. It was a simple moment, but we all needed it and craved it in this mess, the comfort that can only be found with one another. This situation is another team building exercise together and I’m glad I have this team and these people.
I’m also thankful we have an incredible village who are letting me be the weepy mess that I am and still want to be with me in spite of being the Debbie Downer of friends right now.
I’m ready to take the next steps towards healing.
In the meantime, the site may suffer, my workload will need to be lightened until I can get the hand pain under control, and I’m sharing this to buy some grace if things feel off here or if I don’t respond to your emails. I’m not myself right now, but I’m thankful we finally have an answer.
If you want to learn more about EDS check out the Ehlers-Danlos Foundation page!