Personally, I’m not sure where the key to understanding my illness begins. As far back as I can remember I haven’t felt well. I remember being a young child, crying to my mother that I just didn’t feel okay. When I was 5 years old, my mother, my brother, and I were sick with mononucleosis. I became much sicker for much longer than they did. To the point where doctors had my mother bring me to the clinic every few days to have more and more blood drawn. After that illness, I was never the same.
When I turned 17, my illness began to kick it up a notch. I began accumulating new severe allergies every time I turned around. By 20, I was in and out of the doctor’s office more than I went to class. At this point, I was struggling to make it out of bed each day or even feed myself a proper meal. When expressing my pain and symptoms to my doctor, I was told
There was absolutely nothing wrong with me and I was an over stressed college student who needed more sleep.
But I couldn’t sleep. I couldn’t be awake. I couldn’t do anything except exist in my apartment on my couch with a bowl of microwaved mac and cheese.
When I moved to a new area, I had a new doctor. This time, he tacked a name onto my symptoms, Chronic Fatigue Syndrome. Like many other people, I walked out thinking, “well, I guess it is just because I’m really tired,” not really understanding my diagnosis. But I did have a medication that really seemed to help some of my pain symptoms. I spent the next few years thinking my journey was ending and things would get better the more I rested.
However, the closer I got to 30, the worse I felt. With another move came a new town and a new doctor. As I explained my worsening symptoms, this time I was taken seriously.
Fast forward 5 years, my doctor and I have been through every possible diagnosis you can think of. This doctor added another name to my symptoms and gave me a dual diagnosis. Chronic Fatigue Syndrome and Fibromyalgia. I started a new treatment and some of the symptoms started improving. But I bounced from specialist to specialist, had 6 surgeries, and tried every treatment that could be thrown at me. One by one, each doctor gave up on me.
One day I found myself in the office of a rheumatologist after a rash and a positive ANA gave me a possible lupus diagnosis. The rheumatologist informed me it wasn’t lupus and rather this disease that he thought would blow my mind, Fibromyalgia. I’m not sure if it was hearing the name of a disease I had been given 5 years prior, the arrogant way he dismissed all of my symptoms, or the fact that he was trying to convince me to go to a speciality fibro clinic that didn’t take insurance and cost $2,000 per visit, but I lost it.
I’d hit breaking points before but never like this and certainly never in a doctor’s office. I cried uncontrollably, unable to verbalize anything. Shaking, getting angrier with every sentiment of “this is a good diagnosis” this doctor threw at me. He had taken 2 minutes to look at a chart and decided he had no answers for me other than what I’d been told before. Finally, my husband stepped in to explain why I was so upset. The doctor said nothing and exited the room.
I left that visit feeling like I had lost everything. I was ready to meet my fate living with unanswered questions, dealing with symptoms no one could explain, and spending everyday feeling like I was the crazy one because the fibro was doing more than what textbooks said it should.
After the rheumatologist visit, I returned to my PCP with the one suggestion of a new treatment I’d been given. He was in just as much disbelief as I was that nothing new had surfaced. He said he wanted to grasp at another straw and see if a medical school would have someone who could treat me.
A few months later, I made a 3-hour journey to see a dermatologist at the University. I’d been to many dermatologists before with no success. By the time I arrived at this one, the rash I had was covering the majoring on my face, scalp, arms, legs, back, and other areas of my body.
Still, I had very little hope of an answer. My self-confidence and willingness to push through another specialist visit was lower than ever. Every molecule in my body hurt. Joints, bones, skin, fingernails, you name it, I had a pain in it. And what would this specialist tell me that no one had before? Sure, they took corner cases, but like most I assumed they’d tell me I had no reason to be there.
When the resident doctor entered the room, she looked at my face a bit perplexed. Studying the pattern, flasks and redness that seemed to be all over. She reviewed my past biopsies, tests and treatment and said she had never seen a case like mine. The attending joined her with the same conclusion, adding that no adult should have psoriasis above the neck.
“So, it’s not psoriasis? Is it related to my fibro? Is it something else?” I asked.
And he said something that changed my perspective.
“Why don’t we stop looking for a name, and start getting you better?”
I’d never thought about getting better. I was focused on something to blame. Something to call this monster floating above my head. If it didn’t have a name, could I really know how to accept it?
The attending labeled it “atypical psoriasis, causing psoriatic arthritis caused by an unknown form of inflammation.” The treatment was an injectable medication that had the potential to clear my rash, ease my painful joints and improve my “quality of life.” Reminding myself I had very little quality to my life at that moment, I agreed to give it a go.
Today, I have been on this treatment for about 6 months. I can’t say it is flawless or that I feel 100%, but I can say I feel better. It makes my daily life more tolerable. I’m able to do more activities and “exist” more than I have in 15 years. I still struggle with understanding the “why me?” of it all. But I care less about why I have it and what it is and choose to focus more on how I feel each day. Can I physically climb mountains? No. But each step with less pain gets me one foot higher.
You can connect with Jenna by following her on Instagram.
Fibro Ramblings: Thanks so much Jenna! I am so grateful that you have shared your story, as each face and story added raises Fibromyalgia awareness.