May 01, 2011
I've been suffering swelling episodes since 2004, first in my face. Sometimes it would be my whole face, most times it's half of my face or more specifically swelling of my lips, cheeks and/or eyes. In 2006 my husband rushed me to the emergency room with a dual ear infection as well as facial swelling so badly that my upper lip was blocking my nose. They diagnosed me with Bells Palsy by doing nothing more than looking at (and poking) my face.
In 2007 I began to experience swelling in my hands and feet, accompanied by a horrible burning sensation (but no itching). It happens most times at random, and very suddenly (unlike the swelling in my face, which I can feel coming on by a tingling sensation and experience no burning or pain). Sometimes the pain is mild and simply irritating or uncomfortable, other times the burning and painful sensations hurt so badly I cannot sleep at night. Hot/cold compresses, warm/cold baths and antihistamines DO NOT work for my hands and feet (HOWEVER, I have found that antihistamines do somewhat help my facial swelling, though not completely). At that point I began to suspect that maybe Bells Palsy had been an inaccurate diagnosis. I just tried to put up with it.
In 2009 my mother started experiencing swelling in her face, hands and feet as well. She saw an Immunologist, who tested her for Angioedema Types I and II. Both came up negative, but he was interested to learn that we both suffer from this. Not only that, but both of us are allergic to dairy and both of us have very sensitive stomachs to many foods (I am also allergic to eggs, but she is not). Even more interesting, he said, is that both of us suffer from hormone problems (I have PCOS and am infertile now, my mother is Pre-Menopausal). I went to see this Immunologist and also tested negative for Angioedema Types I and II. He suggested we try testing certain foods... but I have found that no foods or even alcohol match up to the swelling episodes. Sometimes they literally just happen out of nowhere for no reason that I can think of. Over time I've found that putting pressure on my hands (lifting objects, putting things together, painting, scrubbing countertops, washing dishes, et cetera) sets off swelling and burning in my fingers, palms and wrists. I put my son's bed together one evening and my hands were so swollen and burning so badly, I couldn't cook dinner. I was up all night long. I've also noticed that pushing the grocery cart in the store causes my palms and wrists to swell, I have to make my husband do it. With my feet I find that walking barefoot on hard surfaces sets them off, or resting my feet against objects (like the bottom of my kitchen table). I prefer (and love) to be barefoot because over the years shoes have begun to make my feet more uncomfortable. But sometimes it just happens and I have NO idea what set it off. The burning is unbelievable, feeling much like my hands and feet are on fire from the inside. But there is NO itching accompanied. Some days my hands and feet won't be swollen or burning at all... but they're feel so sore, as if I'd run a marathon overnight.
Also, not sure if this is relevant but the Immunologist also seemed interested... in 2010 I began suffering from chest tightening and breathing problems. I was seen by a doctor several times and told I do not have asthma, but that my lungs were becoming enflamed by the moisture in the air (New Orleans humidity). Any time I walked outside on humid days my chest would tighten and I would be unable to breathe without the assistance of an emergency inhaler. Since moving to El Paso (dry air) I have not had any issues with chest tightening or breathing.
Unfortunately, before any more testing could be done, my husband was restationed to Fort Bliss in El Paso, Texas and have not been able to find ANY Immunologists who accept military insurance (I will not go to the Army Medical Center- as they claim to not have much for Immunology and Allergy) and the nearest Immunologist is 4 hours away in Albuquerque. I am currently looking up regular Allergists and Rheumatologists, but cannot seem to get in touch with ANYONE!
I've been researching and trying to find people who commonly suffer these symptoms so that I can talk with them... but everything I find has a dead end. I don't know what to look for, what to ask for or where to go.
So here are the highlights:
22 years old.
Facial Swelling began in 2004.
Swelling and Burning of hands and feet began in 2007.
Mother's swelling episodes began in 2009.
I suffer from PCOS (and have been trying to conceive my second child for 4 years).
I am allergic to dairy and eggs and have an extremely sensitive stomach, as is my Mother.
I have had eczema (from the waist down) since I was a baby.
I do suffer recurrent rashes on my arms and sometimes abdomen.
Non-smoker, drink (wine) occasionally.
Developed breathing problems due to humidity in 2010.
No family history other than cancers and food allergies.
Tested NEGATIVE for Angioedema Types I and II.
Currently trying to find someone to continue testing.