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Medical Forum / Diseases and Disorders / Lupus / February 2007new user with lupus and fibro - been lurking and reading but still have so many questions
Hi all! I have been reading posts here for a few months. I was diagnosed with lupus and fibro after a bad spout of pneumonia. Previously I was told I had osteo and COPD. I guess the main question I have at this point, is how do I distinguish between the two diseases. I have very bad light sensitivity (the florescent lights make me sooo ill.) Dr has me wearing sunscreen +50 and a hat. I ache sooo bad, much worse then ever before and take many pain pills a day that do seem to level me out. Is this pain the fibro? and the light sensitivity the lupus? .what else can I do? I am taking plaquenil and a handful of other meds...any insights would be helpful at this point as I am so new and confused as to what is happening to me. > I have very bad light > sensitivity (the florescent lights make me sooo ill.) Dr has me > wearing sunscreen +50 and a hat. I ache sooo bad, much worse then ever > before and take many pain pills a day that do seem to level me out. > Is this pain the fibro? and the light sensitivity the lupus? .what > else can I do? I am taking plaquenil and a handful of other meds...any > insights would be helpful at this point as I am so new and confused as > to what is happening to me. There's a lot you can do. What sunscreen are you using? Anthelios, which contains a substance called mexoryl, is supposed to be the best available UV-A blocker (most sunscreens are designed to allow some UV-A to reach the skin, on the weird idea that a tan is good for you. Mexoryl is supposed to block almost all of the UV-A). A company called Sun Precautions sells clothing with a high SPF; look at http://www.sunprecautions.com/cgi-bin/sgdynamo.exe?HTNAME=_home.htm for information. Rit Dye makes a product called Sun Guard; they sell it with their regular dyes, and you add it to your laundry. It will increase the SPF of clothing by 30 or 40; their site is at http://www.ritdye.com/ You can buy plastic films which block UV light, for both house windows and car windows. Auto parts shops should have the plastic for your car; the Yellow Pages will have film-sellers under "Windows." (You can also put the plastic over your TV screen and computer CRT; they're another source of UV light). There are companies which sell UV-filters which go over fluorescent tubes. My list is a bit old, but try these sites for filters: http://www.gamonline.com/index.php http://www.improvementscatalog.com/home/diy/20647-Uv-Light.html http://www.uvprocess.com/product.asp?code=FILTER+++I http://www.encapsulite.com/uvblocking.html http://www.conservationresources.com.au/home/products/product.php?pid=174 --Bill Thompson [ >You can buy plastic films which block UV light, for both house windows >and car windows. Auto parts shops should have the plastic for your >car; Check with the car licensing people in wherever-you-live in case they have restrictions on which windows you can cover.  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! >>You can buy plastic films which block UV light, for both house windows >>and car windows. Auto parts shops should have the plastic for your >>car; > Check with the car licensing people in wherever-you-live in case they have > restrictions on which windows you can cover. Good point. I sometimes forget that outside Utah driving is normally regarded as something other than a contact sport. --Bill Thompson I think the phrase that CA gov uses is "it is a priveledge to drive"...but then we have so many priveledged people driving...we even have a gov official who wants to phase out regular light bulbs and force everyone to go to flouresant (sp)....Guess we will have to sit in dark houses <g> if that passes. Once again CA leading the way with more "stupid" legislation. Hugs, Sherry >>>You can buy plastic films which block UV light, for both house windows >>>and car windows. Auto parts shops should have the plastic for your [quoted text clipped - 7 lines] > > --Bill Thompson >I think the phrase that CA gov uses is "it is a privelege to drive"...but >then we have so many priveledged people driving...we even have a gov >official who wants to phase out regular light bulbs and force everyone to >go to flouresant (sp)....Guess we will have to sit in dark houses <g> if >that passes. Once again CA leading the way with more "stupid" legislation. They will take my incandescent bulbs from me when they pry them from my cold, dead hand! Or my cold, living hand (%#&@ Raynaud's). Every so often I hear a news report that LED-type light bulbs will be available Real Soon. It will be a great night when Real Soon gets here; the idea is that diode-type bulbs will use less energy, last much longer, and produce white light without any UV output. --Bill Thompson Years ago we replaced all of the overhead lighting in our house to flourescent to save on our electric bill....then discovered that they were not so good for me....so replaced them again with incandescent lighting (except the garage and I don't hang out there). So, I'm with you and them prying them out of my cold, dead hands. Sherry >>I think the phrase that CA gov uses is "it is a privelege to drive"...but >>then we have so many priveledged people driving...we even have a gov [quoted text clipped - 14 lines] > > --Bill Thompson William R Thompson wrote: >>I think the phrase that CA gov uses is "it is a privelege to drive"...but >>then we have so many priveledged people driving...we even have a gov [quoted text clipped - 11 lines] > energy, last much longer, and produce white light without > any UV output. I'm coming in late here, but one problem I see with LEDs is that the frequency spectrum is so limited. Sunlight provides all the visible wavelengths in nearly equal proportions. Incandescent lighting's waveform spread is uniform, but the intensities in the blue end is a bit weak. White LEDs are great for indicators and emergency lighting, but I see a lot of gaps in the spectrum. Nonetheless, I like their energy effieciency, but I don't see tham as an absolute substitute for sunlight. Fluorescent lighting does not always provide the whole spectrum, plus there is always that annoying flicker. There are those high effieciency Philips 40 watt tubes about 20mm in diameter and a warm white cast which were touted as an energy efficient solution to other fluorescent lighting. I work in a factory where we have those lights. Our resident maintenance guy/electrician warned us some time ago that the ballasts give out often. From that, I hardly see any savings when one is changing ballasts as often as incandescent bulbs. My DW Marie who has posted here tries to stay out of the sun. Her light sensitivity isn't as bad as some of those here, so we can get away with those high efficiency fluorescent bulbs as a substitute for incandescent bulbs. That reduced UV output from incandescent bulbs can save your bacon. I just don't want to see it to the point where one needs a prescription from their MD for incandescent bulbs. That's when Big Brother gets too invasive. SignatureCurtis R. Anderson, Co-creator of "Gleepy the Hen", still "In Heaven there is no beer / That's why we drink it here ..." http://www.gleepy.net/ mailto:gleepy@intelligencia.com mailto:gleepy@gleepy.net (and others) Yahoo!: gleepythehen I think the phrase that CA gov uses is "it is a priveledge to drive"...but then we have so many priveledged people driving...we even have a gov official who wants to phase out regular light bulbs and force everyone to go to flouresant (sp)....Guess we will have to sit in dark houses <g> if that passes. Once again CA leading the way with more "stupid" legislation. Hugs, Sherry ~~~~~~~~~~~~~~~~~~~~~~ Sherry, If the stupid legislation passes, buy about 200 regular light bulbs and several new lamps. If you live near another state, don't worry about it since you can drive to the other state and buy light bulbs and lamps. Those same stupid people made regular toilets illegal in California. I live in California so I have a legal low flow toilet. We have to flush it several times so we actually use more water than we used with the normal (high flow) toilet. I read that lots of people in California now buy high-flow used toilets on ebay since they hate making use of the low flow toilets that you have to flush several times. California is a strange state that has crazy laws. Jason ~~~~~~~~~~~~~~~~~~~~~~~~ "William R Thompson" <wrthomps@ix.netcom.com> wrote in message news:0_Swh.17763$pQ3.1442@newsread4.news.pas.earthlink.net... > "Andy" wrote: > [quoted text clipped - 11 lines] > > --Bill Thompson I hear you!!!!!!!!! And to think that in the 60's we were California Dreamin <g> Sherry > I think the phrase that CA gov uses is "it is a priveledge to drive"...but > then we have so many priveledged people driving...we even have a gov [quoted text clipped - 37 lines] > > > > --Bill Thompson > If the stupid legislation passes, buy about 200 regular light bulbs and > several new lamps. If you live near another state, don't worry about it [quoted text clipped - 6 lines] > toilets that you have to flush several times. > California is a strange state that has crazy laws. I thought that it was a Federal law that only 1.6 gallons per flush toilets could be sold. Some bizarre part of environmental law. Or at least that's what Dave Barry once wrote about. SignatureCurtis R. Anderson, Co-creator of "Gleepy the Hen", still "In Heaven there is no beer / That's why we drink it here ..." http://www.gleepy.net/ mailto:gleepy@intelligencia.com mailto:gleepy@gleepy.net (and others) Yahoo!: gleepythehen > > If the stupid legislation passes, buy about 200 regular light bulbs and > > several new lamps. If you live near another state, don't worry about it [quoted text clipped - 14 lines] > "In Heaven there is no beer / That's why we drink it here ..."http://www.gleepy.net/ mailto:gle...@intelligencia.com > mailto:gle...@gleepy.net (and others) Yahoo!: gleepythehen I think the only question I didn't get an answer to is how about the sunlight?? This light sensitivity is crazy, especially when you work in flo lighting all day and nite.......trying to work through it with sunscreen and a hat but 10 minutes under the lights and I feel like I am going to explode!! Instant swelling and sweats, bright red face and shortness of breath and loss of mind..... Are the sun rays going to affect me like this? Going to be a long summer/life if I can't find a way around this . DITTO!! I can sooo relate and after over 50 long years of deal/living with this, I still have no answers! If you ever do 'find a way around this', ... Puhleeeze!! post your results! hugs, Shelagh http://clik.to/lupus "cntlady" <cntlady@gmail.com> wrote in message: I think the only question I didn't get an answer to is how about the > sunlight?? This light sensitivity is crazy, especially when you work > in flo lighting all day and nite.......trying to work through it with [quoted text clipped - 3 lines] > Are the sun rays going to affect me like this? Going to be a long > summer/life if I can't find a way around this. [ >I think the only question I didn't get an answer to is how about the >sunlight?? This light sensitivity is crazy, especially when you work [quoted text clipped - 3 lines] >shortness of breath and loss of mind..... >Are the sun rays going to affect me like this? You would seem to be one of the 40%-plus affected by UV light, so yes. The cause is ultraviolet light, a natural component of both sunlight and fluorescent light. The effect depends on the wavelength of the UV and also on the individual concerned; it is nearly always delayed, reaching a peak 1 - 5 days after the exposure. >Going to be a long >summer/life if I can't find a way around this . See for example Photosensitivity and Treatment on this page: <http://www.medical.lupusuk.org.uk/gp_guide/clinical_aspects_of_lupus/ski n.asp> SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > > > If the stupid legislation passes, buy about 200 regular light bulbs and > > > several new lamps. If you live near another state, don't worry about it [quoted text clipped - 25 lines] > > - Show quoted text - Again not such great news from me. But yeah it stays, it's hard to deal with. Especially when we look basically normal but people can't see our pain. Until the rashes take over and we've been forced to take a seat on the ground because of our sun reaction... The one thing that I can think of is go ahead and check out support sites for XP. Xeroderma Pigmentosum is rare and very aggressive photosensitivity. So these families have found some good ways to help make daily life a little easier. Some sites also have links to great products. On Feb 2, 10:05 pm, "William R Thompson" <wrtho...@ix.netcom.com> wrote: > >>You can buy plastic films which block UV light, for both house windows > >>and car windows. Auto parts shops should have the plastic for your [quoted text clipped - 6 lines] > > --Bill Thompson thanks for the ideas everyone. Lupus is turning out to be a veryyyy strange disease! |
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