In early March of 1989 I was a fifteen-year-old girl with a mysteriously swelling left foot. This swelling had happened once before, but it went away. Now, this time it did not go away. My mother questioned me as to whether I had twisted my ankle, or been bitten by a bug. I did not think either of those things had occurred.
Mom took me to the doctor who measured both legs and found that the swelling in the left leg went all the way up to the knee. Being that there was no obvious cause, I was sent in for testing. Dye was injected into my foot, and x-rays were taken to check for a blood clot. There was none.
Over the next few years the swelling only increased. I found it more and more difficult to get the puffiness to go down just by elevating my feet. I saw several doctors, none of which who seemed to be concerned with the matter. They in fact reassured me that it was normal for women to have swelling feet… They were not the ones who dealt with the annoying task of trying to buy shoes that were two different sizes. If I wore a 7 wide on my right foot which was normal, then where could I buy a shoe to accommodate the left foot which could be up to five times bigger around on any given day?
Oftentimes, in my late teens and early twenties I worked in retail, either as a cashier or a sales clerk. That did nothing to help the problem with my foot. A doctor once recommended I should take a sit down job.
It was not until 1999 after being referred to a neurologist for neurological issues, that a physician began to seriously consider there might really be something wrong with me again. Then, I was tested for Lupus, Lyme Disease, Multiple Sclerosis and Rheumatoid Arthritis. The doctor was leaning towards a diagnosis of Rheumatoid Arthritis. I lost my insurance and no further testing could be done at that time.
Two years later, I was experiencing a lot of pain and swelling in my hands, and still the same painless swelling in my lower left leg. I went back to see a new primary care physician and he started the tests for Rheumatoid Arthritis. Although I tested positive for RA. Factor at that time, the x-rays taken of my hands and feet showed no damage to my joints. I was referred to a rheumatologist anyway.
In the meantime, the primary care physician had put me on a an NSAID to relieve the symptoms of swelling and pain. After taking 750 milligrams of Salsalate a day for several days, like a miracle, the swelling in my left leg subsided a great deal, as did the swelling and pain in my hands.
I saw the Rheumatologist in November of 2001. He did a pressure point test by pressing certain points up and down my spine, and asking, “does this hurt, does that hurt?
I’ll admit the spots were tender, but his diagnosis came as a shock to me.
He told me that I didn’t have Rheumatoid Arthritis. That in fact, what I was dealing with was Fibromyalgia. He tried to convince me that the disorder would cause one foot to swell up five times larger than the other, and that if I took some antidepressant to help me enter state four sleep, it would alleviate my symptoms.
I have to admit, I didn’t know a lot about fibromyalgia, other than my friend who is a nurse has it, and it causes her to be achy all over her body. I didn’t have that kind of pain. I wasn’t familiar with fibromyalgia causing one foot to be so greatly swollen. I didn’t buy the diagnosis. I refused to take the medicine, or see the doctor again.
That caused a bit of a rift between me and my primary care physician. Over the next few years I could keep the swelling in my leg under control by taking Salaflex, but it never went away completely.
In late 2003 my mother, who lives in a different state, said that she had been talking to her doctor about my swelling problem. She said he thought it was a condition called lymphedema, and that I should look it up on the internet.
As I researched, I began to see photographs of people with mismatched like mine, and read stories about women whose legs had mysteriously started to swell during puberty, as mine had. I thought I had found the answer to my problem.
I gathered several articles from the National Lym phedema Network’s website on the diagnosis and care of lymphedema, and took them to my primary care physician in hopes for a referral to a lymphedema specialist.
The doctor laughed. He refused to look at the papers and said I did not have lymphedema, because the type of swelling in lymphedema doesn’t pit when pressed, and mine did. He tried to tell me my swelling was “normal”, but I grew angry. I did not understand why he would deny me a referral to a specialist. Without the referral, there was a chance my insurance would not pay for the visit.
I made an appointment and in February of 2004, saw the specialist who took my history, examined my leg, and gave me an official diagnosis, something I’d waited 15 years for.
I have what is known as Primary Lymphedema Type II, called Lymphedema Praecox. It is caused by an underdeveloped lymphatic system, starts around the time of puberty in girls, and usually presents in the left lower leg.
Lymphedema is a treatable, but not curable condition. Treatment includes compression therapies such as manual lymph drainage, and not all insurance companies cover the treatment, or even recognize the condition.
The real danger in having lymphedema is that the tissue becomes weakened and prone to infection over the years. The fluid hardens, and it becomes more and more difficult to treat as the condition progresses.
To this day I continue to take Salaflex to keep the swelling under control. This is not a known treatment for lymphedema.
