Henry: Eosinophilic Fasciitis

I am fifty-eight years old and have been a picture of excellent health for all of my life. I have never spent one night in the hospital and the only doctor's visit was for my annual physical. Up until two weeks ago the only medication that I was taking was a daily baby aspirin.

I became a physical fitness nut in my early twenties. I was working out, running, golf, tennis, racquetball, jumping rope, etc., to the point that my wife felt that I had become obsessive/compulsive. Probably some truth in that, but I am not going to give her the satisfaction of being right. Up until I was diagnosed with this disease two weeks ago, I was exercising five days a week. I mentioned this because what I have read refers to strenuous exercise as a possible cause of Eosinophilic Fasciitis.

My story sounds similar to the other Eosinophilic Fasciitis (EF) stories. I have fatigue (more so than normal) and extreme tightness/stiffness associated with pain in legs and arms. Back in January, I noticed a swelling in my ankles. I went to my internist thinking that I was retaining fluid. He ran some tests mostly in connection with my heart and they came back negative.

Then I started noticing a subtle tightness in my right calf, almost like dry skin. There were more tests done, again thinking that the heart, kidneys or something like that, was causing the problem.

The disease then grabbed hold and started spreading like wild fire. The next sensation was in my left calf and then, just like that, it was in both arms from wrist to elbows and both legs from ankles to knees, extreme tightness and stiffness along with the pain. But it did not slow me down from my daily routine.

All of this was being conveyed to my internist, so the focus was changed after a battery of tests—such as echocardiogram, cat scan, and more blood tests—showed that the heart and kidneys were not the problem. More blood tests and a sonogram on the arteries and veins in my legs were negative. Blood tests for lupus and rheumatoid arthritis were negative.

At this point the doctor had gone through his punch list of expertise and still had no clue. He was referred to a rheumatologist and he also mentioned a dermatologist as an option. I got the same advice from a retired urologist.

So I made an appointment and after feeling my legs and arms, he mentioned scleroderma as a possibility. One biopsy from the forearm showed that it was not scleroderma, but it did not show what it was. A deeper biopsy in the forearm came back negative. But a deep tissue biopsy from my right calf gave us the answer back on July 27th.

The dermatologist and rheumatologist are working hand in hand to come up with a game plan on medication. Right now, I am taking 60 mgs of prednisone/day, 1000 mgs of calcium citrate/day, 35 mgs of actonel/week and they just put me on 400 mgs of plaquenil/day. As mentioned, I started the medication two weeks ago. The swelling in the ankles went down to normal size within twenty four to forty eight hours.

The tightness and pain has diminished somewhat. I have been told the only exercise allowed is light walking. The only side effect, so far, is sleeplessness.

I understand that this is a rare exclusive club that us fellow sufferers belong to. My doctor and his partner told me that they have never seen a case of EF.

There is an old saying "misery loves company" and I would like to hear from some of you all, especially if you were an exercise freak like me. I would like to know what you are doing to stay in shape.

Thanks for your time.