Frustrated with Urticarial Vasculitis

I was diagnosed one year ago.  Where has the time gone?  Oh wait!  I know. It was spent in Drs offices and labs and lounging on the couch.

It's refreshing to read others have similar symptoms.  However, it also seems none of us are getting real answers as to the core of this sometimes debilitating disorder.

Mine starts with hives on my head that travel down and typically settle in my eyes.  Imagine the stares I get especially when out with my 6'4" beau.  

Yes, lots of facial swelling, and don't get me started on the bruising!  Then it moves into my shoulders, down the spine and across to the hips.  My back cannot be touched for about 36 hours.  Once that subsides, it shows up in my butt and down my legs.  

I can't leave out the most interesting symptom yet...liver hematoma.  You want pain?  That was excruciating! Not that my back doesn't knock me over but that organ pain was awful.

So, yes, I, too, have internal bleeding with no induced trauma.

Really?  What the hell is going on here?  Why?  How can I relieve this pain when ibuprofen is off limits?

I've done steroids for months at a time.  Drs don't want me on it for any length of time and I'm in agreement.  

There's talk about starting a form of chemo but I know nothing about this and need to do some research.

What I do know is there isn't enough info on UV.  I'm learning a lot by what I've experienced thus far.  It's painful & ugly.  

I used to have beautiful skin.  Now, I have red butterfly rash, dry, flaking skin whenever in a flare (more often than not), and bruised swollen eyes upon waking.  That was some fight during the night.  I wonder what the other girl looks like. 😂

 I can't do anything strenuous because they're afraid of more internal bleeding.  Wrap me in bubble wrap!

The latest is pain behind and in my eyes which caused the blood vessels to break making me look like a zombie on Halloween.  The pressure was horrible and came forward yesterday making me look, once again, like I'd been in a bar room brawl.  I turn to Rocky and say, 'Cut me, Mick!'

How many times before I have permanent damage to the optical or retinal nerve?  What about the pressure on the eye?  Hello ophthalmologist!

It's like it affects every bit of my body one area at a time, from day to day.

Trying to enlighten those around me is difficult because they don't always see the symptoms and I feel I come across as a drama queen when I can barely walk some days.  

Ugh!  Ok...I'm going to get some good rest and fight the good battle again tomorrow.  

0 likes, 9 replies