I am a 40 yo female with seronegative RA for last 5 years.
7 months ago, I started developing massive bilateral pitting edema in my legs. At first, I assumed it was just my RA again, as a flare produces painful swelling in my feet.
This wasn't as painful, nor did I have the associated malaise with a flare.
I went to my RA, he dismissed me as I have a number of fibromylagic complaints, and he thinks we're all fakers, essentially.
Referral to another Rheumatologist. This doc had moved into MY RA's office the week before, and followed suit with my doc...
He didn't examine me, but rather glanced at my feet, telling me that it couldn't be RA, because "RA is only in the hands" (Really? Someone get this guy a medical journal), and that the swelling was "caused because I was fat".
WHAAT? He then prescribed me Cymbalta for the fibro and sent me on my way.
Frustrated, further humiliated and depressed the swelling proceeded to get so bad, I couldn't walk, bend my legs or really do anything without extreme pain. One night the swelling had filled me up to my abdomen - we went to emerg - the doc wouldn't treat me because he "didn't know what it was". AAARGH. He tested my heart and lungs=fine. Sent me home.
Went to my GP in desperation - prednisone prescribed. Slight improvement over several days. When I stopped the swelling returned with a vengeance.
Back to emerg by ambulance when I started having shortness of breath. Another doc unwilling to treat me because he didn't know what "it" was.
Referral to their "Rapid Assessment Team". Their "Doctor House" equivalent. Spent an entire week getting every major test/scan under the sun. Heart, Kidney, Liver function is all good. I was low in calcium which made no sense as I drink about a liter of skim milk a day. (Addicted). They found nothing....and they just kinda stopped looking and shrugged shoulders.
Oh - first Doctor(s) to prescribe anything = diuretics.
And sure, they helped with 'some' of the swelling.
Back to my GP. Screaming in frustration, he is equally frustrated. It has now been 7 months and the swelling isn't going anywhere. He scheduled ultrasounds of abdo and pelvis to look for a "mass". I had those today.
DEAR GOD WHAT DO I HAVE? PLEEEEEASE HELP ME, I FEEL LIKE NO ONE IS LISTENING OR HELPING ME. I have literally been trapped in my own body and house for 7 months and I am desperate.
Thanking you in advance if you can shed any light.
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