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Lindsey: Eosinophilic Fasciitis

One morning I woke up and could not get myself out of the bed.

My name is Lindsey and I am twenty-four years old. I was diagnosed with Eosinophilic Fasciitis (EF) in 1995.

It was summer and my mother noticed the swelling first. My arms and legs no longer had any shape, my ankles were as big as my knees. Then one morning I woke up and could not get myself out of the bed. Everything hurt to move and I barely had the strength to lift an arm.

I went from my pediatrician to a nephrologist to a rheumatologist to another rheumatologist who specializes in scleroderma. I went through tests and blood work and the deep tissue skin biopsy and ended up with a diagnosis of EF. I began prednisone, methotrexate, plaquenil, NSAIDS, and various vitamins.

Before treatment I could not make a fist or straighten my fingers completely. My toes would not bend and I had limited range of motion in all of my joints. I looked very different and felt like a beached whale.

I began my medication as well as physical and occupational therapy. I regained a little flexibility but mostly I just learned to adapt. I currently still take methotrexate.

About five months ago my doctor and I decided to try life without it, but that turned out to be a mistake. After three months without it the pain was almost unbearable. So I am now back on it and of course it is a lower dose and it has only been about two months so it hasn't fully taken effect. And the worst part is I have to go through all of the initial side effects all over again, the nausea and the hair loss.

My skin remains very thick and constricted. I have shiny patches of skin and red patches. I live in North Carolina and hate it. The humidity is awful here and there are days when I feel like my skin could just burst. I have rheumatoid arthritis from head to toe. I have multiple aches and pain, and joint contractures. My hands now look like claws, which are oh, so attractive.

I see a pain specialist for pain relievers and sleep meds. My sleep is very poor, I sleep at most two hours at a time, but usually only thirty minutes. My limbs go numb and burn and tingle. My joints tend to lock in place and bring tears to my eyes when I try to move. I take a pill for that. And heat and a TENS unit works wonders.

I am sure that many who read this will be new to EF and I do not want the rest of my story to be discouraging. I have been told by three rheumatologists that I am in no way a textbook case and I belong in a museum. I have not responded to any of the therapies.

My case is severe, but I believe without those therapies and medications I would be a lot worse. Over the last eleven years I have developed many other health conditions, and no doctors will say that these conditions are completely unrelated to the EF. It is, after all, an autoimmune disorder and a connective tissue disorder.

I have severe GERD and constipation, which I take several medications for. I have Raynaud's, and very poor circulation. I have severe migraines, and issues with neuropathy. I take pills for that. I have developed severe allergies and asthma over the last two years. And the latest addition is Inappropriate Sinus Tachycardia. My heart was beating about 160 times a minute for around eight months before we figured out what was wrong. And of course I take a pill for that.

The cardiologist tells me that as I age, my heart will age and slow down naturally, but to remember that a heart only has so many beats in it and I have already used up a lot. Even with medications my heart rate will not go below 100 beats per minute.

I do not know what the future holds, so I am getting proactive now and I am improving my eating habits, and beginning a new exercise regimen now that my heart allows. I also plan to start taking Remicade at the beginning of the year.

I am looking for other kindred spirits who have questions or encouragement or just need a kindred ear. Believe me life with EF is a lot easier with support.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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