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Medical Forum / Diseases and Disorders / Lupus / April 2006Anyone sensitive to WIND? vs Sunlight?
Years before I ever even knew about lupus I was out on a tour boat on a beautiful, warm, sunny, windy day in Lake Tahoe. I had been out all week in the sun, but that day was windy. Even though I was on vacation, after the tour and 2 hours out in the wind, I was unexplainably wiped out. I went back to my hotel and crashed...sleeping like a log for hours. This happened many times over the years. I started noticing that if I'm outside and it's windy, that I end up with irresistable fatigue after a short period of time...sometimes a headache too. I have never had a problem with just the sun...only wind. Now that I know I have lupus, I was wondering if there was a connection after reading about people who are photosensitive. I found and article at this link: http://www.mtio.com/lupus/lal_5.htm At the end the article mentions that wind can aggravate lupus. Since I haven't ever heard of anyone else having wind sensitivity, I was curious if anyone here has noticed sensitivity to wind without the sensitivity to the sun? Thanks, Michelle I don't have Lupus...Just FM...And I am very sensitive to the wind...My skin is very sensitive to touch...and when it is windy....OUCH.... Hugs Cindy > Years before I ever even knew about lupus I was out on a tour boat on a > beautiful, warm, sunny, windy day in Lake Tahoe. I had been out all [quoted text clipped - 21 lines] > Thanks, > Michelle Wow. Luckily my skin is fine with the wind. I can feel fine in the wind, but after a while I just feel it sucking my energy right out of me. It's the weirdest feeling. That must be awful. I imagine myself walking around with a silk scarf tied around my head like my grandmother dir...or maybe one of those middle-eastern head dresses. :-) I just try not to go out if it's really windy out, but you can't always avoid it. Michelle > I don't have Lupus...Just FM...And I am very sensitive to the wind...My skin > is very sensitive to touch...and when it is windy....OUCH.... [quoted text clipped - 24 lines] > > Thanks, > > Michelle Wind or cold on my face can trigger the neuralgia in my face. NOT good!!! I think I have more problems with sun and hot then just sun. I have a friend with MS and she's an RN++ and she says that when we get hot we lose moisture. That's the way our body's cooling system works. Nerves require lots of moisture to survive and the tiny little nerve endings are the first things to breakdown and "die" in heat as the body dehydrates. On a normal person this is not a problem but for someone with MS they can't replace the nerve endings fast enough so for them it spells more nerve damage and worsens their condition. I love a little sun on my face and body. I don't sunbathe and I don't think any of my body has been exposed to much direct sunlight in years other than face, neck, hands, and arms. I might have had a bathing suit on 5 times in the last 10 years and that was only in the evenings. But even covered the heat seems to get the best of me. Yet on a cold winter day I can run outside for a few minutes and hold my face up to the bright light and revel in the sunbeams. (I do not suggest anyone else do it but I can do it without causing harm.) Bev > Wow. Luckily my skin is fine with the wind. I can feel fine in the > wind, but after a while I just feel it sucking my energy right out of [quoted text clipped - 35 lines] > > > Thanks, > > > Michelle > Wind or cold on my face can trigger the neuralgia in my face. NOT > good!!! [quoted text clipped - 58 lines] >>>> Thanks, >>>> Michelle I have real trouble with wind, it gives me a really bad headaches and I hadn't noticed until Friday that the combination of only a tiny amount of sun and some wind make me really, really tired and wiped out. I have been bad since Saturday now and don't seem to be making any progress. Janet AKA Snake Lady Janet, That is terrible. :( I can totally relate. It's like the wind just sucks everything right out of me. Are you on any medicines? I'm looking for something that might help, and if I find anything, I'll definitely share the info here. So far they have put me on plaquenil, which honestly hasn't done a thing for me. The first day of 10mg of prednisone, I felt like I'd found a miracle drug because I felt amazing the next day, but after that it feels like my body just adjusted and I'm as tired as ever. It has taken care of my daily sneezing episodes, though (which has been the office joke since I sneeze every day at least 3 times a day at work). I hope you are feeling better by now. I'm still trying to identify triggers since I've felt like I'm on an energy roller coaster. I never get to a "normal" energy level, but the lows are pretty bad lately. I appreciate your input (as well as everyone's). So many days I feel very alone in this since no one seems to understand. It's great to have the people here who can relate. Michelle > Janet, > [quoted text clipped - 19 lines] > > Michelle Hi Michelle, not feeling much better, today it is horrendously windy (gale force) and very chilly, I didn't even manage to get out of bed today until 12.30 GMT. I haven't even been out of the house in two weeks, thats how awful I've been, its only the posts here that keep me sane. I haven't as yet got an actual diagnosis on what is wrong with me, other than, my diabetes, thyroid, arthritis and kidney problems, but I have more than four of the recognised symptoms of lupus, but no medical person will agree because I don't have the marker in my blood. So its like talking to a brick wall trying to get them to understand how I'm feeling. Good luck and keep your chin up Janet > its only the posts here that keep me sane. This is the first time anyone has suggested I could have *that* effect on people! > I haven't as yet got an > actual diagnosis on what is wrong with me, other than, my diabetes, [quoted text clipped - 5 lines] > them > to understand how I'm feeling. Same here: various symptoms of lupus, but when I've gone in for tests the results are more or less normal. I suppose the bleeder on my arm this morning is strictly imaginary and my shirt sleeve will come clean with a little delusional bleach. I'll do the laundry just as soon as that nonexistent fatigue gives me enough of a break and the nonstiffness in my knees ends. --Bill Thompson William R Thompson wrote: > > its only the posts here that keep me sane. > > This is the first time anyone has suggested I could have *that* > effect on people! LOL > So its like talking to a brick wall trying to get them > > to understand how I'm feeling. [quoted text clipped - 4 lines] > imaginary and my shirt sleeve will come clean with a little > delusional bleach. Have you ever gone to ER and had it cauterized? I was reading on several newsgroups. allergy newsgroup guy said his nose bleeds often due to allergies Anoother newsgroup someone said some people's blood vessels are closer to the surface of the nose so can get nose bleeds easier, so I was wondering if you'd tried cauterizing. that's what stopped mine, many years ago. I arrived at the hospital with a bucket of blood, they showed me how to properly hold my nose, but IIRC, they did cauterize it. > I'll do the laundry just as soon as that > nonexistent fatigue gives me enough of a break and the > nonstiffness in my knees ends. I think a sleep doctor wanted me to try Ritalin, but my point was I don't sleep well (nor long) at night, so I'm up more than half the night. So seems to me I'd be running full-speed on low oil.. If you sleep well (and long) might be something to try for fatique, or I'm just reading that adderall has less side effects . I guess all there is for stiffness is getting up and moving around. I have same problem I suppose yuo could ask about a medicine and see how it goes.. J > William R Thompson wrote: >> I suppose the bleeder on my arm this morning is strictly >> imaginary and my shirt sleeve will come clean with a little >> delusional bleach. > Have you ever gone to ER and had it cauterized? I get these bleeding spots every so often at different places. I take a cotton swab and dab some rubbing alcohol on the spot. First, though, I have to notice the bleeding. This new spot has been annoying because it's relatively large ( 2mm x 3 mm) and instead of forming a nice bead, the blood was almost watery. > I was reading on several newsgroups. > allergy newsgroup guy said his nose bleeds often due to allergies [quoted text clipped - 3 lines] > you'd > tried cauterizing. I haven't thought about that. Usually my nosebleeds aren't bad. I think it's because the air here is dry, which must speed coagulation. Most of the time I can take a few deep, slow breaths, and the draft of air seems to do the trick. > I think a sleep doctor wanted me to try Ritalin, but my point was I don't > sleep > well (nor long) at night, so I'm up more than half the night. So seems to > me I'd > be running full-speed on low oil.. I'm reluctant to try any sort of medication; my experiences with them have been variable. The last time I tried anything for sleep (one of those OTC cold medications) I spent a half-hour hallucinating, followed by a full day of insomnia. --Bill Thompson William R Thompson wrote: > > I think a sleep doctor wanted me to try Ritalin, but my point was I don't > > sleep [quoted text clipped - 6 lines] > those OTC cold medications) I spent a half-hour hallucinating, followed > by a full day of insomnia. The meds I mentioned arent' for sleep. They're to be taken mornings and supposed to help with fatique (during the day). J > William R Thompson wrote: >> I'm reluctant to try any sort of medication; my experiences with them >> have been variable. The last time I tried anything for sleep (one of >> those OTC cold medications) I spent a half-hour hallucinating, followed >> by a full day of insomnia. > The meds I mentioned arent' for sleep. > They're to be taken mornings and supposed to help with fatique (during the > day). I'll have to see what the doctor says, the next time I see him. Side-effects make me leery, though. I'd love to get rid of the fatigue but I don't want to trade it for something worse. --Bill Thompson William R Thompson wrote: > > William R Thompson wrote: > [quoted text clipped - 10 lines] > Side-effects make me leery, though. I'd love to get rid of the > fatigue but I don't want to trade it for something worse. lehill is taking provigil for fatigue. It's here, if you want to check side effects http://www.rxlist.com/cgi/generic2/modafinil_cp.htm I hear ya about side effects, but you won't know unless you try. J > lehill is taking provigil for fatigue. It's here, if you want to check > side > effects http://www.rxlist.com/cgi/generic2/modafinil_cp.htm > I hear ya about side effects, but you won't know unless you try. > > J Provigil has REALLY changed the quality of my life..... I highly recommend it! Lisa William R Thompson wrote: > > William R Thompson wrote: > [quoted text clipped - 15 lines] > Most of the time I can take a few deep, slow breaths, and the > draft of air seems to do the trick. What causes nosebleeds? The most common causes are dryness (often caused by indoor heat in the winter) and nose picking. familydoctor.org/132.xml Sounds to me that you're in a vicious cycle by self-treating (alcohol is drying) and may have damaged your skin in the nostrils. Counteract the drying effects of indoor heated air by using a humidifier at night in your bedroom. Open your mouth when you sneeze. Sounds like you need humidifying there, Bill and I would get it cauterized and then try aloe cream in the nose to keep the nostrils moist. http://en.wikipedia.org/wiki/Al I have no financial interest in it, just thinking might be longer term solution... J > What causes nosebleeds? The most common causes are dryness (often caused > by > indoor heat in the winter) and nose picking. familydoctor.org/132.xml > Sounds to me that you're in a vicious cycle by self-treating (alcohol is > drying) and may have damaged your skin in the nostrils. I don't use the alcohol there. That's for anywhere else the bleeding starts. It coagulates the blood, and I figure it would be a good idea to disinfect the area. > Counteract the drying effects of indoor heated air by using a humidifier > at > night in your bedroom. I've tried that; it doesn't help. And I've had some nosebleeds start in the shower, where the air can't get much more humid (I *have* followed the advice to not take overly-hot showers. I'm note sure how much impact that has.) > Open your mouth when you sneeze. Pretty much unavoidable with me! --Bill Thompson William R Thompson wrote: > > (alcohol is drying) and may have damaged your skin in the nostrils. > > I don't use the alcohol there. That's for anywhere else the bleeding > starts. It coagulates the blood, and I figure it would be a good > idea to disinfect the area. Sorry Bill. I misunderstood. Your bleeding elsewhere? Spontaneous or from a cut? Is spontaneous bleeding a symptom of lupus? If not, have you been seen by a hematologist? I don't think we've pursued bleeding disorders.. J "J" wrote : > You're bleeding elsewhere? Spontaneous or from a cut? It's spontaneous. It's not skin cancer, or any other sort of cancer. It only seems to follow UV light exposure, and it's accompanied by skin flaking and the occasional petechiae. Usually it's on the arms; sometimes it's on the scalp or face. Normally these bloody spots are tiny, almost as if the blood squeezed out through a pore. > Is spontaneous bleeding a symptom of lupus? I don't know--discoid lupus? I haven't had any major organs implode on me. > If not, have you been seen by a hematologist? The MD I saw last year did an extensive blood panel. A few of the numbers pushed the limits, but nothing was wildly out of bounds. The doctor didn't seem concerned when I mentioned it, but then again he wasn't talking about his blood. --Bill Thompson William R Thompson wrote: > "J" wrote : > [quoted text clipped - 10 lines] > > I don't know--discoid lupus? I don't think discoid. http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm petechiae web page (various causes) and they also mention purpura. One lady here has purple feet and we don't know if it's Raynaud's or purpura. Hematological disorders (or abnormalities) are mentioned in the FAQ > I haven't had any major organs > implode on me. [quoted text clipped - 5 lines] > of bounds. The doctor didn't seem concerned when I > mentioned it, but then again he wasn't talking about his blood. hello Bill, I just realized we're revisiting everything we visited when you first came here. I was researching "bleeding" in the archives and saw your first post (mouth sores, fatigue, joint pains) and think "well, why am I doing this?"... I can't remember <g> And I'm left wondering, much like my brother, if it takes a flare before one gets a diagnosis. (although there's a pattern, speckled is not specific, The rim (peripheral) pattern is the most specific pattern for lupus Antibodies to Sm antigen are found almost exclusively in lupus, & when present, help to clinch the diagnosis of SLE. There's a few reasons for diagnosis: 1) treatment and monitoring, but you seem reluctant about medicines 2) applying for disability 3) explaining (or accomodation) at work or school 4) watch for it in children 5) might be other reasons... I know that John (don't know if he's lurking) had a spreadsheet and he would track (log) all his various bloodwork. I think when you're ready you'll get copies of yours and compare to the diagnostics in the FAQ (or the Lab test webpage that I post from time to time) to see if something was missed on the bloodwork or what it reveals Where I come from, MDs don't usually do the extensive bloodwork required to screen or diagnose for Lupus. Uusally referred to a rheumatologist for that. So I guess it's (having) the right bloodwork, the criteria and the right timing for a diagnosis.. (but I'm not an expert) I'll leave that with you. I'm sure you'll do what's right for you. J > hello Bill, > I just realized we're revisiting everything we visited when you first came > here. > I was researching "bleeding" in the archives and saw your first post > (mouth sores, fatigue, joint pains) and think "well, why am I doing > this?"... I can't remember <g> Don't feel bad, I had the same sense of deja whatever (I know I've heard the correct term somewhere before). > So I guess it's (having) the right bloodwork, the criteria and the right > timing for a diagnosis.. I tried to set off a flare before I saw the doctor last year, but I suppose I didn't try hard enough. I got a little sun on the days before I went to see him, but aside from having lost six or seven pounds I didn't feel too bad. Then I got quite a bit of sun on the trip to and from his office that day, and a few hours later I was having an interesting time. > (but I'm not an expert) I could say the same for a few MDs around here . . . grumble, grumble. --Bill Thompson William R Thompson wrote: > > So I guess it's (having) the right bloodwork, the criteria and the right > > timing for a diagnosis.. [quoted text clipped - 5 lines] > trip to and from his office that day, and a few hours later I was > having an interesting time. And what was the interesting time? Sorry for asking but it takes me so long, these days, to be searching the archives. J > William R Thompson wrote: >> I tried to set off a flare before I saw the doctor last year, but I >> suppose I didn't try hard enough. I got a little sun on the days >> before I went to see him, but aside from having lost six or seven >> pounds I didn't feel too bad. Then I got quite a bit of sun on the >> trip to and from his office that day, and a few hours later I was >> having an interesting time. > And what was the interesting time? The fatigue hit me and I had to lie down; pass out; wake up an hour later with numb hands and the worst leg and foot cramps I've ever had; chills as my temperature dropped; "gastric distress" (couple that with leg cramps so bad I could hardly walk, plus cold hands, and just getting to the bathroom became an adventure). The sore face and teeth. Thosewere the day's high points. It seemed interesting at the time. I suppose you had to be there. I remember, later, someone posting about muscle cramps and calcium. I'd had them before but I never associated them with sun exposure. Since then I've taken calcium/vitamin D pills just about every day, and the muscle cramps haven't recurred. Which reminds me, I wanted to ask about dental problems and lupus. I've had a lot of cavities over the years, despite lots of brushing and flossing. I've also had a lot of decalcified spots on my teeth; twice I've had chunks of teeth just fall out. Right now the dentist has me using something called Prevident, which is supposed to restore lost calcium to the teeth, and I'm using non-alcohol mouth wash/rinse. Does anyone have any other healthy-teeth tips? --Bill Thompson [ >Which reminds me, I wanted to ask about dental problems and >lupus. I've had a lot of cavities over the years, despite lots of [quoted text clipped - 4 lines] >non-alcohol mouth wash/rinse. Does anyone have any other >healthy-teeth tips? This sounds more like Sjogrens than Lupus, not that that helps much...  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! "Andy"wrote: >>Which reminds me, I wanted to ask about dental problems and >>lupus. I've had a lot of cavities over the years, despite lots of [quoted text clipped - 4 lines] >>non-alcohol mouth wash/rinse. Does anyone have any other >>healthy-teeth tips? > This sounds more like Sjogrens than Lupus, not that that helps much... I looked at the symptoms of Sjogren's, and they don't match up here. My eyes and mouth don't go dry, or anything like that. --Bill Thompson I seem to have the same or similar problems with my teeth. I think I have spent enough at the dentist to buy a new car or two....the dentists have basically given up as they had no idea what to do or what was causing it. Guess I have tried several who were supposed to be really good ones. Wish I had some healthy-teeth tips and wish I had some years ago! Sherry William R Thompson wrote: > I remember, later, someone posting about muscle cramps and > calcium. I'd had them before but I never associated them with [quoted text clipped - 9 lines] > non-alcohol mouth wash/rinse. Does anyone have any other > healthy-teeth t I've always wondered why my older sister's teeth were crappy, mine are hard and white and my younger brothers' are crappy. I think all things equal with my brother ; ate similar diet and loads of milk. My sister may have drank less milk. So then I wonder was I a calcium hog, in my mother's belly.. Or maybe there were too few years between each pregnancy, except that sis was first and she got awful teeth. Or maybe they didn't drink milk much until the babies came so mom was short on calcium, but then that doesn't explain my brother. Or maybe - heard this one? - we're taller than we're ancestors and that's true comparing my grandparents to their childdren and us grandchildren. Maybe too tall uses calcium for tallness and antoher part of the body suffers. Are you tall? J (about dental problems) > Or maybe - heard this one? - we're taller than our ancestors and that's > true comparing my grandparents to their children and us grandchildren. > Maybe too tall uses calcium for tallness and antoher part of the body > suffers. Are you tall? Yes; six feet/183 cm. I get that from my grandfather Dubois, who was six-foot-four/193 cm. I don't remember if he had any dental problems. --Bill Thompson Hi Bill, I think that the quality of teeth may be a hereditary thing. I am fairly tall for a woman (5'9' 1/2" ) and not heavy. I weigh well under the 120lb mark. I have very good teeth though. I haven't had a cavity for years and years. I have a friend who is perfectly healthy, but had dentures by the time she was in her early twenties. She had always taken good care of her teeth too. Taking calcium is certainly good, but sometimes it may not make a difference in your teeth. BJ-Sk. Canada > (about dental problems) > [quoted text clipped - 7 lines] > > --Bill Thompson > Hi Bill, > I think that the quality of teeth may be a hereditary thing. I am fairly [quoted text clipped - 5 lines] > difference in your teeth. > BJ-Sk. Canada Must be hereditary, now that I think twice. I must go look up genetics, 2 of 4, 3 of 4, I've fogotten that from high school... J > Must be hereditary, now that I think twice. > I must go look up genetics, 2 of 4, 3 of 4, > I've fogotten that from high school... Trying to deal with family genetics is a problem. Once every few years my parents remember to tell me about a cousin or other relative who had a problem that might be related to mine, but I never established any sort of connection. It's hard to say. I still think that Beldar and Prymat haven't told me everything about our family background. --Bill Thompson William R Thompson wrote: > Trying to deal with family genetics is a problem. Once every > few years my parents remember to tell me about a cousin > or other relative who had a problem that might be related to > mine, but I never established any sort of connection. Frustrating, isn't it? I tried going back (by asking various relatives). They have a "they're dead, why bother askling questions" attitude. I know some of my family (health) history but there's gaps missing and now what I knew is getting blurry (time has passed and I failed to write it down). > It's > hard to say. I still think that Beldar and Prymat haven't told > me everything about our family background. I don't know what Beldar and Prymat is so I really can't comment on that. How are you doing, Bill? Sorry,I've been absent (less computer use) - icing my elbow again. J > William R Thompson wrote: >> Trying to deal with family genetics is a problem. Once every >> few years my parents remember to tell me about a cousin >> or other relative who had a problem that might be related to >> mine, but I never established any sort of connection. > Frustrating, isn't it? > I tried going back (by asking various relatives). They have a "they're > dead, why bother asking questions" attitude. I know some of my family > (health) history but there's gaps missing and now what I knew is getting > blurry (time has passed and I failed to write it down). And whenever Grandma Thompson talked about the family, her favorite expression was "he died a horrible death," not that she'd go into details. (Now that I think of it, Grandma never said "*she* died a horrible death." Makes me wonder if there's some extra danger to being a man in this family.) To add to the fun, both of my grandfathers were industrial chemists before they got married. I know they were both exposed to various substances that can do interesting things to DNA. >> I still think that Beldar and Prymat haven't told >> me everything about our family background. > I don't know what Beldar and Prymat is so I really can't comment on that. Hah! "The Coneheads" from Saturday Night Live, back when the show was funny. Beldar and Prymat were two (obviously) alien people who lived on Earth. They had a daughter who was born on Earth and didn't know her folks were from out of town. Whenever the kid would ask about her family's peculiarities they would explain "We are from France!" > How are you doing, Bill? Okay, oddly enough, but give me a minute and I can find something to whinge about. > Sorry, I've been absent (less computer use) - icing my elbow again. I hope the elbow improves quickly. --Bill Thompson Have you considered getting copies of death certificates and checking out the cause of death on them. I have spent years researching my family tree and have copies (not certified as they are cheaper that way) of death certificates for many of my ancesters. Just a thought. Sherry >> William R Thompson wrote: > [quoted text clipped - 41 lines] > > --Bill Thompson "Sherry" wrote : > Have you considered getting copies of death certificates and checking out > the cause of death on them. I have spent years researching my family tree > and have copies (not certified as they are cheaper that way) of death > certificates for many of my ancesters. Just a thought. I never thought of that! My brother Mark has been researching the family tree. I'll have to see what he's found. He's concentrated on the DuBois side of the family, though--in this country, being a Thompson is like being an Ivan Ivanovich in Moscow. It makes searching the records a challenge, especially because Dad's side of the family moved a lot. --Ivan Ivanovich Thompson William R Thompson wrote: > The fatigue hit me and I had to lie down; pass out; wake up an > hour later with numb hands and the worst leg and foot cramps I've > ever had; chills as my temperature dropped; "gastric distress" > (couple that with leg cramps so bad I could hardly walk, plus cold > hands, and just getting to the bathroom became an adventure). > The sore face and teeth. Thosewere the day's high points. temperature is controlled in the Hypothalamus (in the brain) - not sure where to go with this for you. You may want to do some searching... I do have gastric moments where I have get to the bathroom quick, but they're rare and may be food related. My gastirc distress requires that I eat (high carb) and lie down. (take a relaxer and sleep, if possible). How does one explain when it happens, while driving, at a doctor's office, in a store, or parking lot. "I'm in pain, I have to lie down, please feed me quick, so the pain'll stop". Yeah right. The pain is abdominal or back muscle spasms. (sometimes both) Some days I still think I have porphyria, but a variant that doctors don't know how to test for. Doesn't really matter (what they call it), I have to deal with it and I do. So if I go anywhere, I have to pack a lunch or know where there's a bathroom and a fast food place, so I can get to it quick. J > William R Thompson wrote: >> The fatigue hit me and I had to lie down; pass out; wake up an >> hour later with numb hands and the worst leg and foot cramps I've >> ever had; chills as my temperature dropped; "gastric distress" >> (couple that with leg cramps so bad I could hardly walk, plus cold >> hands, and just getting to the bathroom became an adventure). >> The sore face and teeth. Those were the day's high points. > temperature is controlled in the Hypothalamus (in the brain) - not sure > where to go with this for you. Usually to the closet for a jacket. > You may want to do some searching... Adrenal problems, thyroid problems (none of which I have). Andy and some other people mentioned temperature drops can go with lupus. --Bill Thompson William R Thompson wrote: > temperature is controlled in the Hypothalamus (in the brain) - not sure > > where to go with this for you. > > Usually to the closet for a jacket. LOL > > You may want to do some searching... > > Adrenal problems, thyroid problems (none of which I have). Andy and > some other people mentioned temperature drops can go with lupus. Deja Vu again eh? J - out of my mind, please leave a message. Janet, and Bill, I am in the same boat. I have so many of the symptoms of lupus...the positive RF, a high SSA, low C4, extreme fatigue, chest pain, thyroid...but they won't commit to a diagnosis at this point. My doc this morning still left me with "diffuse connective tissue disorder," saying my symptoms resemble the "picture of rheumatoid arthritis" even though I have no pain. He keeps throwing SLE out as an option as well. I am guessing you guys are like me and feel like out of every condition out there that you identify most with what you read about lupus. Good luck to both of you. Waiting on the definite diagnosis is stressful in itself. I know either way regardless of what they diagnose that I'll still feel the same way, but to have a label and to be able to say with certainty that I have xxx would give me a sense of relief. It feels so ambiguous to just say, "well they're not sure but it could be.....X or X or X." People look at you like you're a science project or something (at least with me they do.) Hang in there, all. Michelle That is very interesting...I wonder if the moisture factor could be remedied by drinking extra water or misting with a spray bottle (the second isn't ideal for a lot of situations). I'm just curious. Oddly, for me I sometimes feel better being out on a sunny day (without wind)...the second it's windy, I feel awful. It's definitely interesting what different things our bodies are sensitive to. Thank you for sharing...I am very fascinated by this whole thing...if I could find a remedy, it would be wonderful. I was so wrapped up talking about how the wind could actually "hurt" my skin...Yes it can cause me to Flare with my FM also... Gee aren't we lucky.. Hugs Cindy > Years before I ever even knew about lupus I was out on a tour boat on a > beautiful, warm, sunny, windy day in Lake Tahoe. I had been out all [quoted text clipped - 21 lines] > Thanks, > Michelle Cindy, Hugs right back. I have been in a flare for what seems like an eternity. Wind definitely exacerbates it. Before I knew I had lupus I was just frustrated with being tired all the time for no reason. The funny thing is now that I know I have lupus and that it's the cause of my fatigue I am just as frustrated as before. I guess there is a level of satisfaction from being able to classify it and put a name on it, but it's just really been getting to me lately. To want to plan an outdoor event or just take my dog for a walk and to have it be contingent upon whether or not it's windy just plain sucks. *big group hug* To you, Cindy, and to everyone here who suffers from this. Thank you for your support. I hope we can find some relief from our illness soon. Michelle |
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