swelling/thickening or burning/stinging outside of facial region?

[Guest guest]

Hi. I was recently diagnosed with cea after a long process of

trying to find out what the bump on my nose was. During the last 8

months I went from having the bump on my nose to also getting a

burning pain in the end of the nose (burning was underneath the skin

not on the surface). I got swelling/ thickening to the side of the

nose and burning pain in my right thigh (underneath the skin) as well

as swelling/thickening in my back. I was eventually referred to a

dermatologist about 4 months ago and he said I had cea---my face

was/is red (looks like I have a mild sunburn on my face and my pores

are large, as well as having some (papules?)). He gave me some

Metrogel to use twice a day. I started using this about 4 days after

discontinuing some topical and nasal steroids which I had used for 2

weeks (which I received from the ENT). After about 2 days of the

Metrogel, my condition suddenly started becoming rapidly worse and I

discontinued the Metrogel. My joints started becoming very stiff and

painful followed by swelling. Then my muscles started becoming very

stiff and painful and cramping very easily---starting in the thighs.

Meanwhile, the burning and swelling phenomenon started spreading like

wildfire. Subsequently, I had swelling, pain and redness erupt on my

cheeks and chin followed 2 weeks later with the same on my knee caps -

-minus the pain. Later, about 2 months ago, the area around my mouth

erupted with swelling and extremely painful burning along with skin

that , in patchy places, is weird looking and hair has fallen out

where it's at (primarily on neck)--also has a very greasy feel to it.

Also, during this time I starting getting intermittent stinging pain

which felt as though it was more on the surface of the skin ( also

all over my body) as well as spreading into my eyes causing

irritation and sand like feeling.

Since all this, the pain swelling and stiffness is 95% gone from

joints, pain is 95% gone from muscles, stiffness 35% gone I would

say. However, the swelling/thickening of tissue has still been

progressing at an alarming rate--which is primarily in my nose,

cheeks, and around mouth. I can also tell that I am beginning to get

thick folds of tissue roughly 1 " wide forming from in between the

cheek and nose down past the mouth to the jaw on both sides.

Likewise, I seem to be getting this swelling/thickening virtually

everywhere on my body---abdomen,back,arms,legs etc. As the problem

spread, it seemed to get up into my lungs and I had a CT scan where

upon they found some sort of nodules in my lungs. I've had a lot of

tests done including ANA, rheumatoid, scleroderma, muscle enzyme,

even a full body PET---everything is normal--except the CT. Anyone

else out there having swelling/thickening or burning/stinging outside

of facial region? Is this " just " a systemic case of cea or what?