The Case of the Mismatched Feet

I was 13 years old the first time my left foot swelled. Had a bug bitten me? Did I twist my ankle? The questions from my family were numerous and I didn’t have any answers.

Fortunately, over the next few days, that swelling went away on it’s own. But two years later it was back with a vengeance, all the way up to my knee and unwilling to drain. I saw a doctor who ordered a venogram. The test showed no blood clot in my leg. The swelling didn’t go away. It got worse. The doctor said it could be Reflex Dystrophy, but this time my family could not afford any more tests.

Over the next few years I began experiencing numbness and tingling sensations in my arms and hands as well as my left leg. I saw another doctor who told me the symptoms weren’t anything to worry about. But I ought to be sure and take a sit down job.

At 19, with my first pregnancy, the swelling settled into my hands. I went from a size 8 to a size 9 ring. Of course after I had my caesarean section the doctors were concerned about my leg. Compression hose were ordered so I did not develop a blood clot during recovery.

At 22 years of age I saw another doctor who tried diuretics to reduce the swelling. It didn’t work. So I went to doctor #4 who said pretty much the same thing doctor #2 had said, “Its nothing, don’t worry about it.” Finally when a 4 X 4 wood beam fell on the swollen foot I had an X-Ray to see if any bones were broken in the accident. The doctor joked that the chronic swelling condition had served as a shock absorber. No bones were broken, but my foot was twice its normal humongous size.

After the numbness and tingling in my hands and arms got worse. At age 25 I saw yet another doctor. Baffled she referred me to a neurologist. I had numerous blood tests. I even had an MRI done plus tests for Multiple Sclerosis, Lupus, Lyme Disease, and Rheumatoid Arthritis. All test results were negative.

I was told to take aspirin once a day to help the swelling. It did nothing except give me an upset stomach. Thinking that it was definitely an autoimmune disorder, the doctor did not rule out Rheumatoid Arthritis completely. But I lost my insurance and had to stop seeing him.

Two years later I had a bad flare up with my hands and saw another doctor (#7). He put me on Salsalate (a.k.a. Salaflex) 750mg daily to bring the swelling down. Miraculously, my left foot decreased in size by about 75%. I was X-Rayed for R.A. bone damage. None was shown.

I had another blood test for R.A. factor and it was negative. None the less, I was referred to a Rheumatologist who did a Fibromyalgia Tender Point test and informed me that I had Fibromyalgia that  caused my left leg to be so much bigger than my right. He wanted to put me on a pill to help me enter stage 4 sleep so my body could heal itself. I didn’t buy the diagnosis.

It’s been three years since I was diagnosed with fibromyalgia. I have searched relentlessly on the internet and ran across a condition called lymphedema. Here are people with mismatched limbs like me. Can it be? I asked my doctor (#7) and he said “No, it isn’t lymphedema because your edema pits. Lymphedema doesn’t.” But I’ve read too much not to know he was ignorant in the matter so I went to a Lymphedema specialist and went for a second, or 9th opinion!

Today I was diagnosed with Primary Lymphedema. He said the condition in my legs is stage 2-3+ and recommended I start MLD and Compression therapy a.s.a.p.

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Category: Living well with Lymphedema