EDS, Fibromyalgia, and PI: Molly’s Story

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My story is a long one with many misdirections and misdiagnoses abound. I was finally diagnosed in 2016 with Ehlers Danlos Syndrome and Fibromyalgia and in the following year with Primary Immune Deficiency, but at 28 that barely covers what I’ve been through.

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I have always experienced pain, both emotionally and physically.

The emotional, I later learned, was undiagnosed depression that I had since early childhood. The physical pain, however, was apparently not normal. Mind you, how you can explain away a child scratching at their skin until they bleed because of constant pins and needles is beyond me. I was always at the doctor, but never really treated. My asthma, we were told, I would grow out of. The pains in my body, growing pains.

It wasn’t until 17 that anyone actually realized that maybe, just maybe, something is really wrong here.

At 17 my hands crippled me so much that when my mother reached out to grab my hands in excitement at my acceptance into one of the top art schools in the country, I fell to the ground gasping, crying in pain. A referral to a rheumatologist, and there I was, going to art school with allegedly severe Rheumatoid Arthritis. (For future reference, most diagnoses should never look like that).

I took it well, my family did not.

I was relieved to have an answer and the medication was in fact working, so I at the time I had no complaints. It just became a part of my life, something I had to deal with in order to get by. I researched different tools to help me draw and found methods to make it easier when I began college. Professors were shocked but sympathetic, I sat and painted, I took longer breaks. I made it work. Until it didn’t and they wanted me to start on methotrexate.

Let’s jump a little forward to my new diagnosis: Primary Immunodeficiency.

My immune system is not over-reactive. It’s under reactive. The variant of PI that I have makes my body sort of forget. The antibodies from a flu shot will only protect me for so long, in 6 months their usefulness goes down 60% (that’s not an exact number, but you get the gist). Now imagine someone with that on a major immune suppressant; a known chemo drug. My downfall was inevitable.

I became incredibly ill my senior year and every doctor I was referred to had no answers or didn’t believe that an outwardly healthy 20-year old could be so ill. I couldn’t exercise, I could barely eat. The pain I was in was so extreme I could hardly leave my dorm. I never got answers. I was still on the medication, injecting once a week. I began working with it like it was normal, doctors were telling me I was fine, so I had to be, right? I slept when I could between classes, drank my meals in the form of vegetable juices with added proteins (I could still not manage solid meals), and managed to get through my thesis with top grades.

My roommates called me an art zombie. I even had a bed in my studio so I could nap between working on my thesis.

Once graduation came and passed, and I was home with my mother again. My body crashed. Pneumonia, bronchitis, flu, infection after infection, wracked my body. I barely had a day before I was ill again. I was in and out of the doctor. No answers, just treatment. Knowing it was the methotrexate. I decided to lie to my doctor and say I was feeling fine, as she tapered me off, I found myself able to do more and more. Less sickness allowed me to exercise more regularly and eat real meals again. Once it was out of my system, I felt like I had my body back. My depression was better controlled likewise. It didn’t last.

Fast forward 2 years into a job that broke me down emotionally and physically to the day I lost it. My depression was completely out of control for months, the psychologist I was seeing at the time was not listening. He had maxed me out on the current medication I was on and it was no longer working. My body was wracked with pain. It was unbearable.

The day I lost that job due to my illnesses affecting my work was a blessing.

It was also the day I met a new nurse practitioner who would, by happenstance, lead me to my real diagnosis and an absolutely amazing care team. She listened and when she asked about my physical health, she said it sounded familiar and asked if I would consider talk therapy as well. At that point, I would try anything.

When I met with my therapist and we went over my history, she explained what Primary Immune Deficiency was. I had heard of it in passing. Once you’re in the immune disease community you hear of the rare ones. That’s actually what my therapist had as well and one of the reasons my NP wanted me to speak with her since it sounded like I might have it too.

It took a while and a lot of testing, but I got my re-diagnosis. I have PI as well as Fibromyalgia and Ehlers Danlos Syndrome, which explained everything – from my repeated infections to my constant inexplicable pain and dislocating joints. Rheumatoid Arthritis treatment had been a poison to me and my guess paid off. I didn’t have it. I had real names. I could get the right treatment and it would finally make me better, not worse.

It’s partly my resilience and my unwillingness to settle that has led me to where I am today.

But it is also luck. I got lucky, I know that.

Meeting my therapist, who happens to have the same symptoms, the same disease and similar history I have, was lucky. I found my psych NP then by going page by page online until someone seemed like they might be the right fit, like they might listen based on what they wrote about themselves.

There was no algorithm. I wish there were. As a Community Team member with Wellacopia, I felt compelled to support a mission that is working on this. If it had existed before, I may have found her sooner, it may have saved my job until I was ready to leave by choice. But that’s neither here nor there. Fact is, In my 28 years of life I’ve finally learned to be a little more in-tune with my body. To listen when it needs rest, not to push it beyond the limit. But most of all, I have a name for what I have. A real name.

Molly is a talented, passionate, volunteer Community Team member with Wellacopia

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