The first time my left foot swelled up I was 13 years old. The swelling subsided, but came back two years later and did not go away. The doctor I saw at that time took measurements of the affected limb and found the leg measured 1 inch bigger around in circumferance to just below the knee.
I was tested for a blood clot with a dye contrast x-ray. It showed no blood clot. The doctor wondered if I might have Reflex Symphathetic Dystrophy, but no further testing was done at that time.
The swelling foot issue would become more of annoying in my late teens as I started working full time. I'd find I couldn't get my shoe off at the end of the day. And often times elevating my leg, reduced the swelling very little. Buying shoes became a near impossible feat.
I would see several doctors over the years who would tell me that this type of swelling was normal in young women my age, and some even reccommended I take a "sit down job."
Really, is it normal for a woman to have foot that is about four times bigger than the other?
Eventually, due to a myriad of other symptoms I was experiencing including numbness and tingling sensations in my hands and legs, I was sent to a neurologist who did further testing for Multiple Sclerosis, Lyme Disease, Lupus and Rheumatoid Arthritis.
This doctor was leading towards a diagnosis of Rheumatoid Arthritis when I lost my medical insurance coverage... after which no further testing was done a that time.
Two years later, in 2001 I experienced severe swelling and pain in my hands. This led me to a new doctor, who continued testing me for Rheumatoid Arthritis.
I was referred to a Rheumatologist in the fall of 2001. In the meantime, my Primary Care Physician had prescribed Salaflex 750 mg 2 X daily to help the pain and swelling in my hands.
Then, it seemed as if a miracle happened... the swelling in my foot was greatly decreased. The foot didn't go back to normal size, but I'd say it was pretty close. Imagine 11 years of fluid build up, and most of it suddenly vanishes.
When I saw the Rheumatologist he rudely laughed when he saw my chart, the tests that had been done, and the assumption that I had Rheumatoid Arthritis.
He did a pressure point test up and down my spine. Then he told me that I actually had fibromyalgia, and it was causing my foot to be grotesquely swollen... that if I took some antidepressant it would help me enter stage four sleep and the swelling in my foot and hands would decrease.
I didn't believe him because the friends I had who suffered from fibromyalgia were often complaining of achiness and pain throughout their body and fatigue. I had never seen anything about fibromyalgia patients having one limb 4x the size of the other either.
To make a long story short, 3 years later my mother (who lives in another state) told me she had spoken to her doctor about my swollen leg and foot and he said he knew what I had, that it was called "lymphedema."
Mom said to look it up on the internet, and I did. There, some 15 years after the problem became permenant, I finally found pictures of people who had mismatched feet like mine. I read all the symptoms, the puzzle pieces fit. I printed out everything I could find, and took it to my primary care physician, in hopes that he would refer me to a lymphedema specialist for an "official diagnosis."
He wouldn't look at the printouts.
He told me that I couldn't possibly have lymphedema because the type of edema in lymphedema does not pit, and mine did. He again reassured me that this swelling was normal for women.
I was very upset and angry. Can you imagine years of wondering and worrying when one limb is grotesquely deformed, your feet don't match and you can't even buy proper fitting shoes. And your doctor insists that it is "normal."
Without a referral, I did go see the specialist and in 2004 I was diagnosed with Primary Lymphedema Type 2, Meige's Disorder.
From what I understand this is possibly a hereditary condition in which the lymphatic vessels have malformations causing lymphatic fluid to not drain properly.
It has been 3 years since my diagnosis, and I am now in stage 3 lymphedema. The fluid in my toes has hardened and become fibrotic.
The edema in my foot or lower leg does not pit anymore. It seems as if the codition is no long er responding to Salaflex, but for 6 years it did.
I have not been able to obtain Manual Lymph Drainage therapies because my insurance does not cover it.
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