This will be the first post about being sick, but it will not be the last. Yet, even as a I write this, I already feel guilty for saying it. There are people in this world who are far more sick than I, but I am sick.
It has been eight years since I started having symptoms. Eight. Years. That is one-third of my life so far. It will be another 70 years give or take, depending on how long I live, before I find relief. There is no cure for what I have.
Less than two months ago, I was diagnosed with Fibromyalgia coupled with Undifferentiated Connective Tissue Disorder. So I have a pain disorder and an autoimmune disease. I’m not yet 25. That’s a lot to handle.
I was sixteen when I started having symptoms. It started with a chronic pain in my upper back. Then it spread to my neck. Then I started having headaches…then those turned to frequent migraines. I had multiple doctors, across different medical specialities, tell me that they could find nothing wrong with me. When I was 19, I was diagnosed with myofascial pain syndrome (referred to as MPS), which mimics fibromyalgia.
In the fall of 2015 my pain spread to my shoulder and hips, I had multiple MRIs on my shoulder that were inconclusive. I asked my neurologist who was treating my migraines and MPS, if I potentially had fibromyalgia, to which he responded “That’s a trashcan diagnosis.”…. so I went on with the pain spreading and worsening in severity. MPS is not supposed to spread, by the way. The more I hurt, the less I sleep, then the more I hurt from lack of sleep…it was, and still can be, a vicious cycle.
I went back to the neurologist’s office, seeing a new NP, as my previous neurologist retired. She agreed with me that I was doing everything right. I was eating right, exercising, sleeping, foam rolling, taking medication, and yet my issues were still worsening. She referred me to the rheumatologist.
On September 29, I finally met my rheumatologist. I showed him a list of symptoms and his immediate response was what I had been asking for months. Fibromyalgia. He then did a full panel of blood work to check for autoimmune diseases, because they often go alongside fibromyalgia.
Two weeks later, I went back. My inflammation markers were high enough to potentially be lupus, but other symptoms were not consistent. He instead diagnosed me with Undifferentiated Connective Tissue Disorder (UCTD). Neither fibromyalgia or UCTD are curable. Treatable. Not curable.
I have begun a treatment plan. I have started new medications, one will end two weeks from tomorrow, the next may not take full effect until March, but I have been guaranteed they are what I need. I have started doing yoga daily. I have started practicing meditation, which is actually frustrating. I’m trying to eat what my body agrees with. But I will never be curable.
So here I sit, typing, tired, and annoyed. I want to enjoy today. I get to teach one of my favorite things. But I am tired, and so my shoulders hurt, and inevitably my head will probably begin to hurt as well. It is frustrating. It gives me anxiety.
But yet, I do not LOOK sick. I just feel sick. So that is where my next post will pick up.
* WordPress does not like the words myofascial, fibromyalgia, or rheumatologist. It has tried to change them way too many times while I wrote this.