I am a twenty-two-year-old female from Ontario, Canada diagnosed with Eosinophilic Fasciitis (EF). Here is a detailed account of my symptom onset and diagnosis. Hopefully it will help someone recognize their condition early on and seek out a rheumatologist immediately. In my experience, the longer you wait, the more painful and debilitating the condition becomes. It is thought that one contributing factor to EF is strenuous physical activity.
In January 2008, I started ice-skating five to six times a week for 30-45 minutes. After three weeks I experienced a rapid onset of swelling in my lower legs, ankles and feet. I was not in any pain. I went to the ER where they ran blood tests, urine samples, x-rays and ultrasounds. One doctor commented that my feet were so swollen that I looked like I was ready to give birth. In the end the doctors found “nothing wrong” with me and sent me home.
The swelling remained and was worse after long periods of sitting or sleeping. I was referred to a local internist who ran more blood and urine tests. My iron was low, and she suggested that I take iron supplements and see her in three months.
The iron pills did nothing, and the swelling increased. My lower legs appeared shiny and were hard to the touch due to the intense amount of swelling. My feet and ankles were starting to ache and had stiffened up significantly. The only thing that helped was physical activity. I joined a gym and biked everyday. The pain and stiffness was significantly worse on days I couldn't make it to the gym.
I went back to my internist who indicated my blood iron was still borderline low. She diagnosed me with Celiac Disease and scheduled me a gastroenterologist appointment for five months later. Frustrated, I went to a walk-in clinic where I was given diuretics for the swelling and a requisition for physiotherapy for the stiffness in my legs. I took the diuretics for two weeks and they had no effect on the swelling at all.
My leg muscles felt like elastic bands, and I had a hard time walking. The hair on my lower legs stopped growing. I increased my physical activity to 1.5 hours daily. My body was extremely sore, and I was constantly exhausted. My legs became tender to the touch; I would double over with pain if I grazed my shin or ankle on anything. My physiotherapist told me my stiffness was getting progressively worse every time I saw her.
The stiffness and muscle pain spread to my hands and arms. My hands became curled and claw-like; I was unable to flatten my palms against one another. The pain was constant and nothing would give me relief. The only thing I could do was keep moving as much as possible to keep my muscles loose. I wore leg warmers (in the middle of the summer) to prevent my muscles from tightening up. Every time I sat down and tried to get back up my muscles had contracted completely. My legs started changing appearance to a mottled red and white color, and looked like they were made of plastic. My upper thighs became dimpled and bumpy.
I went to my family doctor who referred me to a rheumatologist. One look at my legs and he told me I had scleroderma. He called a specialist who saw me the same day. After checking the capillary beds in my nails ruling out scleroderma, he told me about eosinophilic fasciitis (EF). He had never seen a case in person and read to me about it out of his Med-School text book. He ordered a biopsy, an MRI with contrast and a Doppler ultrasound.
All three tests came back confirming the diagnosis of EF. I was immediately started on 50mg prednisone/day and 20mg of methotrexate/week. The biopsy site took two months to close due to the extreme swelling in my calf. I saw improvements in my stiffness and soreness within two weeks.
It has been eight months since my diagnosis and I feel like I finally have my life back. The process has been very slow, but I felt better every day. I still go to the gym 3-6 times a week and physio 1-2 times a week. My ankle and wrist motion are still limited, and my legs are still stiff to the touch, but we're seeing slow improvements. I am being weaned off prednisone, but am on 20mg/week of methotrexate indefinitely.
Before my diagnosis I tried numerous techniques to ease the pain in my legs. The things that helped the most were:
- keeping active
- leg warmers
- heating pads
- massage and physio (hurts at the time, but feels better later)
- stretching as much as possible
Email: [email protected]
Story edited 04-12-09 JTD
Story posted 05-11-09 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: