Newby is Burned Out on the Burning Face Thing
Hi everyone, I'm new here... but I think this place looks about right for what ails me. I'm feeling pretty dejected about my symptoms and I really need to vent. Please forgive my long dissertation on my background.
I'm a 26 year old male with several cardiovascular issues and a persistent red rash with fairly distinct outlines on my face. My awesome Mother has lupus, sjogren's , sarcoidosis and raynaud's and I'm sure there's one or two that I'm missing. I'm not making that last sentence up.
From what I've gleaned from random snippets of my mother's complaints of her symptoms over the years, I've suspected for a long time that I have some sort of "low grade" lupus. I don't even know if such a thing exists, but it seems rational to me. Whenever I'm exposed to particular volatile organic compounds or random chemicals - especially the vapors of hot materials - I become seriously sick for the next few days. My lungs burn, my face burns, my joints ache, I feel weak and lethargic, and my cheeks, forehead and skin on my upper lip look similar to what I can only describe as raw hamburger... with tobasco.
I've had my blood tested for ANA and I'm sure a plethora of other indicators with nothing positive for any auto-immune disorder. The only time I can remember something being out of wack with my blood tests was when I had too many white blood cells - which seems contraindicative to Lupus, etc.
Today I've joined this forum because I'm searching for answers. I know this is going to sound nuts, but I can't use certain new electronic components without getting seriously ill. These particular electronics all have a foul "hot electronics" chemically/toxic smell to them. If I solder or weld I can pretty much count on feeling like death for the next several days.
I've purchased three 24 inch LCD monitors in the last 6 months, all three of which - I know this sounds totally fruity - have made me feel like I will certainly expire if I stay in the same room with the monitor any longer. I have returned two of the three monitors. I disassembled the third monitor last night in search of a leaking capacitor or hot/scorched component that was offgassing or maybe they call it out-gassing. I never found evidence of a bad part by its definition... only a nose full of smelly capacitors.
The only thing that dramatically improves my symptoms are steroids and NSAIDS. A while ago I did some research on lupus and discovered that those are some of the primary treatments for a flare up. I have asthma, so I usually have a spare bottle of prednisone tablets, so one day after I soldered some pipe and experienced symptoms I just popped a couple of both. Wallah! Like magic, I feel better. What's more curious, if I discontinue my beta blockers (heart meds), I pretty much improve spontaneously without the intervention of the steroid or nsaid.
So my problem is that I have serious symptoms without a diagnosis. I guess it's not a problem, except that there are particular treatment protocols that I haven't enjoyed because a doctor hasn't acknowledged that I probably do have lupus. The symptoms aren't particularly problematic until I'm exposed to some kind of trigger... but I sure would like to have a normal looking face again. It's been several years since my face was clear of the red rashy scales. I pretty much go throughout the day feeling like a freak because of it.
Thanks for letting me vent. I'm just seriously frustrated. If anyone has any advice I'm all ears. I would be tremendously grateful.
Last edited by Duff Man; 02-04-2010 at 05:45 PM.