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. :shocked:
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. :wacko: