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Thread: Newby is Burned Out on the Burning Face Thing

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    Post 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.

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    Hey Duff,
    Welcome to WHL. Your post was a hoot to read - you have a great writing style.
    Many of us have had blood tests that came back normal for years, and dealt with rheumys who refused to treat us based only on those blood tests. You know your own body, so go with your gut feelings and keep looking for a doc who will treat the symptoms. A lot of us have also discussed how environmental factors my have affected our AI issues, too. It sounds to me like you have some "triggers". I'm sure that Rob will be along later and he can address this much better than I.
    We've also discussed the hereditary thing here in several threads. There are many of us who are convinced that we've seen signs of AI diseases in the generation before us, and several of us who are now seeing them in our children. Since your Mom has AI issues, I think that you are reasonable to think that you might, too. (Asthma is also an autoimmune issue).
    I'm a bit concerned about you popping steroids for something other than what they were prescribed for. I hope that you know that you have to take them for the full course (such as 10 days) and that you have to "taper off" of the dose. Also, steroids can be bad news for your bones, causing osteonecrosis, so be very cautious about taking them. I'm sure that SaySusie will be along, and can tell you much more.
    Feel free to check out the threads, learn as much as you can, and gather some ammo for your next trip to the doc.
    Good luck,
    Marla

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    Hiya Duff man,

    Firstly i need to say thats my husbands name too lol

    secondly photo sensitivity is indeed a symptom of SLE, UV light, energy efficient light bulbs and computer screens all emit these, and in turn that will induce a flare. i have switched to an imac 2 years ago and dont suffer from it, also take note of the lighting in your room, old fashioned light bulbs are the best.

    Are you in the US? here in the UK if there is a family history of SLE you are more likely to be tested for it, perhaps you should insist. not having a diagnosis is very frustrating!

    Like you Steroids have been the only thing that keep my SLE reasonably tamed... i been on them for 13 years now :-(, been and still am on lots of other meds, but the prednislone is the only one i respond to, i got a love hate relationship with them.

    though i'm new here myself, i'm active in a UK lupus forum and think it would be safe for me to say that you come to the right place to vent your frustrations.


    If your on facebook look up my page 'i hate prednisolone' there are many there talking about their frustrations but also how they cope.

    Hope things get sorted for you soon.

    karen.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello Duff:
    Welcome to our family I have heard that Beta Blockers can affect the sense of smell and this may have more to do with your nausea at the smell of chemicals than your possible AI issues. What type of steroids are you taking for your Asthma? Is it Prednisone? Please be careful when taking steroids for symptoms other than what they were prescribed for. If the steroids do help you, perhaps you can talk to you doctor about prescribing the right kind of steroids for you suspected AI issue. Prednisone, for AI diseases, can be a Godsend. But, there are many, many precautions that you must follow when using them. One of the precautions are the fact that it is a drug that you must taper off of and should be taken for specific course of time. So, please, please contact your doctor so that you can get the correct prescribed steroidal drug.
    You are not alone in your conclusion that you've suffered from symptoms for years prior to being diagnosed. I think that many of us have come to that same conclusion. Also, it is not at all uncommon for our lab work to be negative and for us to still suffer from the symptoms of an auto-immune disease. That is one of the reasons why these disease are so difficult to diagnose. Many here have suggested and/or employ the use of a journal to list your symptoms and describe when they occur. This journal can be very helpful when meeting with your doctor so that you can make informed decisions together about what is happening to you and what course of treatment you will take.
    In the meantime, you may vent here as much as you like. We are here to help you in any way that we can. Again..welcome!!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hello Duff Man,

    I'm Rob, and I was diagnosed with SLE in 2004. You and I have some things in common. Like you, my Mother also has Lupus. I also have serious problems in dealing with certain chemicals. If I spill even a small amount of gasoline on my hands, I will go into a serious flare without fail. I'm also sensitized to things like MEK, and certian types of flux used in both low temp soldering and high-temp silver soldering. I handled various solvents, acids, caustic salts, and heavy metals for many years, and I am sure that much of my exposure played a part in my developing SLE. Although nobody knows what causes Lupus, I personally believe the theory that there is a genetic pre-disposition that can be triggered by environmental factors, such as exposure to various hazmats, UV exposure, etc...

    It certainly sounds like you could have Lupus. Do you have a Rheumotologist? They are the specialist who usually can make a proper diagnosis. They also are the person to see for disease management if an SLE diagnosis is confirmed. The disease can be notoriously difficult to diagnose. No two people have the same symptoms. If you don't have a rheumo, I would suggest that you get a referral to one. Keep track of your symptoms, severity, and frequency. A journal/notebook is a good way to keep track. Take this info to your rheumo and be persistent. Something is obviously wrong with your health, and you cannot begin to manage the problems without knowing the cause.

    Also, at the top of each forum here, you will find "sticky" areas with facts and info about Lupus and a list of the diagnostic criteria. If it is Lupus, the sooner you can know and begin the proper meds, the better off you will be. We have a large collective base of knowledge here, so don't hesitate to ask questions. Welcome to our group, and I hope we can help you find the answers you need.

    Rob
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    Hi Duff Man!

    Welcome to WHL. I agree with the others, it sounds like you know your body pretty well. I also think you should discuss with you doctor that perscribed the steriods the way you are using them and you should NOT be stopping your betablockers without doctor supervision. If your heart isn't healthy and working the right way, then how are you going to be able to work on the rest of you???
    I also have some things in common with you. I am VERY smell sensative to chemicals & toxins. Certain things that others do notice I do, like the smell of electronics, especially when they get warm, like the phone charging or the laptop when the power cord is plugged in. I had to change my seat at work b/c they put a woman next to me who smokes and to me, she reeks! I also was exposed to some chemicals in my environment when I was younger through art mediums such as ceramics, working in the mechanical engineering building in college (a job I loved that my dr made me quit b/c the air kept making me sick), a factory next door to one of my primary schools that produces the chemicals that make gum have certain flavors and so on. Like your mom, I also have Sarcoidosis and Raynaud's (and Psoriasis). My ANA has always come back "normal" but like Marla said, that doesn't mean much since your could have normal labs for so long and still be experiencing different AI issues.
    This is a great place full of people who understand and have become a real-life virtual family. Welcome!
    One suggestion for you, you seem to be pretty aware of your triggers and I can only assume you have discussed these with your dr. Have you kept a chart or journal of how of these trigger you? If it's always the same trigger or if the trigger has to be in a certain environment? What symptoms appear with which triggers? Have you seen a rheumatologist?
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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