Beyond the rash?

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lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/9/2008 8:55 PM (GMT -7)   
I've been skipping around on the posts - and lost a thread about flares resulting from exposure to sunlight/flourescent light, without necessarily involving a rash.  Someone referred to having fatigue and malaise for 2-3 days after mowing the yard, but no rash.  Is this common?  Do others have mild flares without the rash after exposure to too much light?  There are so many times I can't figure out what triggered feeling so poorly - but always assumed that the rash would be the indicator of a light triggered flare.  Am I making any sense?
 
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/10/2008 12:45 AM (GMT -7)   
Hi Lucy,

For me . . . the rash is actually a blessing because it is a red flag . . . a good warning. I've noticed that the illness I feel from the sun, doesn't necessarily happen immediately. It can be a cumulative affect.

But (for me) the fluorescent lighting has an immediate feeling making me want to flee . . . it doesn't necessarily cause the rash . . . although I can't see me face most of the time . . . so maybe the rash does increase. *sigh*

I don't think the rash is always part of things. Just really frequent for some of us.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/10/2008 8:44 AM (GMT -7)   

Hey Lucy,

I was one of the people who talked about cutting the grass in the sun and being sick for two or three days after.  I have never had the rash on my face as most of you describe it.  My face is more red sometimes, but I don't pay alot of attention to it.  I pay more attention to the sickness for the 2 or 3 days after cutting the grass.  The only rash I get due to the sun, requires prolonged exposure to the sun, whereas the sickness starts almost immediately.  the rash that i have due to the sun, is on my arms and shoulder, and it has these little red bumps on it that scab over sometimes, but they are tiny.  and there is a thickening of the skin in this area also.

Today I am not physically able to cut the grass anymore, but still get the sickness just being out in the sun to go to the doctor or to pay bills.  but it isn't as bad as when I used to cut the grass.  Just a little sick, relativey speaking.

I have two doctor appointments coming up.  ONe on the 22nd, and the other on the 23rd.  I have to cancel one so that I can go to the other.  My rheumy is on the 23rd, so have to cancel the heart doctor on the 22nd.  Because just going to the doctor causes me to be out of it the next day.  exhausted, unable to do things.  It could be partly stress I guess.  I made four wrong turns trying to get to my doctor's office the other day.  i know the way, but for some reason I kept missing the right turn.  Probably not paying attention to what I was doing. yeah

Hope your day will be good to you


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/10/2008 8:46 AM (GMT -7)   

Thanks Rosie, that helps.  And I had to smile when you said the flourescent lighting just makes you want to flee.....actually, I wanted to slap the desk and shout "now that's what I'm talking about!!!" 

I'm just trying to figure all this out - and will start paying more attention.  If I'm in the sun, I'm usually walking or doing some light yardwork.  If I feel crummy later - I have always thought that I either walked too far, or expended too much energy, because without a pronounced rash, I was making no connection to the sun time.  Same goes for flourescent exposure....even  though a trip to Lowe's or sitting in the doctor's office, or the like, more often than not, zaps me - I never connected the dots to the lighting, because, well, no rash.  And winter seems worse,when there is less sun - so go figure.

I guess I'll go back to journaling the details -so tedious - but easier than trying to remember when/what you did/felt whatever it was/is. *sigh*

Thanks for the help!

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/10/2008 9:07 AM (GMT -7)   

Hi Serina - Thanks for your post - it really turned on a light bulb for me.   I just mentioned the Dr. visits to Rosie, as something else that seems to zap me, so it's funny that you mention your trouble with that, too.  Do you think it might be sitting under the flourescent lights in the office/waiting room?  

I did get the rash you described once when I visited my mom in AZ last year, and actually laid out in the afternoon sun, trying to up my Vit D - but I figured my skin was just dry.  Even after I went into a bad flare.  I just didn't know that much about lupus.  I also just experienced some red bumps on my cheeks after sun exposure - and already in flare - while we were on vacation last month.  But nothing like the picutres of malar rash that you see online.  My face is just generally red, too, and dry - fair skinned redhead - so I've just gotten used to ruddy, splotchy skin. 

Anyway - thanks for an extra piece to the puzzle!  Hope your doctor visits go well (without long waits) - hey! Maybe that's why I feel like I can't get my thoughts into actual speech very well when I'm at the doc's - by the time he shows up those darn lights have already put the hex on me!?  Oy!

You have a good day and take care,

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/10/2008 9:19 AM (GMT -7)   
Do you think it might be sitting under the flourescent lights in the office/waiting room?  
 
Well ain't I stupid Lucy??????  Of course it is probably the flourescent lights.  I just never connected that to the doctor visit.
 
Thank you.  Sometimes maybe we are blind with our eyes wide open.  I can't believe I did not connect this to the lights, even though I was talking to you about it.  I must have hit myself over the head with an idiot stick this morning yeah .
 
I have fair and dry skin also.  I associate the dry skin today with Sjogren's.  Because it is so much drier than it ever has been before.  and until recently I did not know I had Sjogren's.  I assumed the dry and wrinkled skin was because of age.
 
Hope your day is good to you, you have made mine a little better.
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/10/2008 10:50 AM (GMT -7)   

Hi Hester - I just love what you said about being blind with our eyes wide open!  It's so true, so often, because we just simply have too many things to be factoring into the equation!  That's my story and I'm sticking to it yeah !  I'm glad you made a connection, too - it's all because of your thread about mowing the lawn - bless you!

Did your dx for Sjogren's come from blood tests or did you have a lip biopsy?  I hope you don't mind me asking.  My rheumie was pretty positive I had Sjogren's despite testing negative in the bloodwork - so she had me do a lip biopsy - which also was negative, but then she said there could be false negatives!  So I'm guessing she still isn't convinced - I certainly have all the symptoms.

Have a great day !

Lucy

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/10/2008 11:29 AM (GMT -7)   
Just a thought . . . for a few years, I've had to wear a long sleeved sun-block shirt over my clothes EVEN in the car. I bought mine at a sporting goods store D I C K S and it was a man's fishing shirt, but much less expensive than the online sun clothes available. Anyway, I just keep on in the car and cover myself from neck to finger tips even in the car. . . even on overcast days.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/10/2008 5:56 PM (GMT -7)   
That's an excellent tip, Rosie.  I have seen the sunscreen clothing in catalogs....never thought about a sporting goods store, and keeping something like that in the car.  I don't think my sensitivity is quite that bad, but I'm just getting around to figuring it out. 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/11/2008 7:58 AM (GMT -7)   
Hey Lucy,
 
My diagnoses for Sjogren's came from a blood test.  I had no idea what Sjogren's was.  My Rheumy did not think me to be in enough pain to have Lupus.  so he did more bloodwork and a few days later, his nurse called me and told me that the doctor said that Sjogren's was what was wrong with me.  Wrong with me?  cool He also said that Sjogren's was a variation of Lupus yeah
 
I have had blood tests done before for Lupus and they were not positive enough for some doctors, though they were willing to treat me with prednisone and plaquenil.  and I have learned here at this forum, that this is what counts, the treatment.  the treatment that can make us feel better.
 
It sounds to me like you have a really good doctor, one that believes the symptoms and not just the blood test.  I would stay with that one.
 
Rosie, I certainly need one of these sun block shirts.  No matter how many times I tell myself to remember the sunscreen lotion, I remember it when I am about halfway to a place that I am going to.  need to put some in my car maybe.  I can see it now.  Stomping teenage boys feet squirting suntan lotion all over the place.  "Whoops sorry Mawmaw" they would probably say.
 
I  could probably save myself a lot of pain later on if I would remember.  Having such a shirt in the car however, would be wonderful.  even if I forgot at first, it would be there when I do remember.  Even if it landed in the floor board and stuffed under the seat, would not matter. 
 
I have robust teenage grandsons, and they throw things in the floor to make room for thier man sized selves in my very small car.
 
 I will have to look around and see if I can find one.  might even be able to find one in the thrift stores.
 
Is it expensive Rosie?
 
Hester
 
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/11/2008 12:11 PM (GMT -7)   

Thanks, Hester. Figuring this AI stuff out is like being a mouse in a maze.  A confused mouse. wink Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/11/2008 12:42 PM (GMT -7)   
Hester . . . the shirts might be on sale now. Look at the "fishing" shirts. I often where the shirt backwards because it is faster to put over my clothes and the collar comes over my neck w/o buttoning. I put my hands into the sleeve and allow my thumb to stick out through the hole in the button placket. This allows the back of my hands to be protected, but gives me full use of my hands for the steering wheel. Wooo Hoooo!!

When you take the shirt off, just place it over the headrest and it shouldn't be in anyone's way. I also have an umbrella tucked into each vehicle. A golf umbrella is best because it is larger and stronger. I actually opened my trunk and pulled out the umbrella after I was rear-ended on the freeway and things were taking way too long when the officer showed up. He was thoroughly amused by the umbrella but I have become friends with my umbrella and sun shirts . . . so I no longer care what people think when I walk along the beach with my strange garb and my umbrella. Its amazing how many people will actually walk up to me and ask me if I am hot, or if I am expecting rain !!! I just explain to them that "I am allergic to the sun" . . . If they want more info, I give them the Lupus/autoimmune/my body attacks itself info.

If you explain to your grands that these things help prevent flares and that they ALWAYS need to be convenient for you, they may even help remind you to use them (my grands are very aware of me being in the sun and they will remind me if I forget). I also carry two hiking poles in my trunk and "yak tracks". The poles are my "yuppy" canes in case it is slick walking in the parking lot . . . and the "yak tracks" are little grips that attach to the bottom of my shoes to give me sure footing on ice. I've actually had people say what a good idea the walking poles are!! Ha! they don't even realize that I fall easily and I'm using them as a cane. A shopping cart is a great walker too. I grab the first one I see in a parking lot and walk in to the store with it. Taaaa daaaaa!! Actually, recently, I haven't really needed much help walking as I've been much stronger . . . but I have still fallen a couple times eyes

I hope you are able to find a good "fishing shirt". Mine was on sale for under $20 (the ones on-line are around $50). I bought one for me and one for my dad who had skin cancer and still liked to golf. There is also a wash-in sun-block for clothes sold with Rit Dye. So you could do a whole load of clothes to make them more sun protective.

Sorry Lucy . . . I kinda high-jacked your thread blush

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/11/2008 2:39 PM (GMT -7)   
No Problem, Rosie - you are a wealth of good info and resources - I'm learning a lot.
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/11/2008 6:26 PM (GMT -7)   

Rosie you certainly are a wealth of information. yeah

you won't believe what I have been doing for a long time.  Using shopping carts as a walker.  I don't get the ones in the parking lot, but do get one outside the store, and I told the kids I need to lean on it.  and it helps.

I fall easy too.  Have fallen down my steps outside several times.  Now I have banisters to hold to and it is not so bad.  I am so unbalanced.  I take meclazine for te vertigo, but I still get unbalanced.  It is like my mind doesn't read depth, or something.  today I was walking to the parking lot and was watching peripherally and it looked like the white line was coming up to meet me.  for a second I thought it was a car.  Have no idea what this was.

I am going to get some of that Rit Dye if I can find it.  that would be really good to have all my clothes as sun blockers.

You are also right about my grands.  They would help me if they knew what the shirt was for and the umbrella.  I lost my unbrella. I need to get another one.  they are only a dollar at a mighty dollar store that I go to sometimes.

I look forward to not needing that shopping cart as a walker.  I have gained back two pounds that I lost, so the meds are working.  I lost twenty pounds while I was so sick.  Today has been a really good day.  more energy, more motivation, and got more things done.  I don't push it though.  don't want to do anything to trigger another major flare.  It was the worst one I've ever had.

Thank you Rosie for all your good advice.  Probably can't get the fishing shirt.  too expensive at the moment, but I can afford a box of Rit Dye wink

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/11/2008 7:31 PM (GMT -7)   
Hester, I sure understand. $20 is like $100 if it isn't available. YES! include your grands. They will actually feel very special for being mature enough to be helpful. Mine have been right there when I fall and I feel so bad for them to see something like that. . . but it seems that they are growing up with extra resourceful minds because of dealing with some of this. They are quick to ask me if I'm still feeling up to things too. So sweet.

I did find one thing that helps with the falling. Even when I'm not able to do my walking program . . . I do tummy crunches right here in my recliner, while I'm typing. Just hold in your gut and see how long you can hold. At first I was SO weak. But now I can hold it in for a long time and it helps to start strengthening your core. This is what your body needs to overcome a fall. Your core strength helps you right yourself when you start to topple.

Good luck with the Rit Sun Guard.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/13/2008 3:27 AM (GMT -7)   

Hey Rosie,

I have been neglectful of my own walking, an exercise that I used to do with my daughter.  Afraid.  I am afraid I will get halfway around the track, and not be able to get back to my car.  Or start walking around the block and not be able to get back home.  But I can do that crunch thing at the computer or elsewhere, in relative safety.  And it is really easy to do, even when I am typing.

Thank you.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/13/2008 8:28 AM (GMT -7)   
(((((((( Hester )))))))

I started out by walking around inside the house. When I felt well enough to do a few laps around the first level, I would walk down to the mailbox and back up the driveway. Progressing very slowly. . . and using the walking poles when needed. The point is to do what you are able to do, even if it is just sitting in a recliner making swimming motions with your arms. Rotate your shoulders, do shoulder shrugs, neck rolls, etc. Anything to keep your circulation moving and to use each part of your body. Tiny bits ad up to progress. I can tell you that I got knocked back too often to count. But even if we go two steps forward, one step back . . . its still progress.

Can you carry a cell phone with you so you have a bit of confidence? Even an old cell phone that isn't connected to a service will allow you to dial 911. I didn't have cell phone for years, and I carried the old, inactive, one with me all the time for the confidence factor. Never needed to use it, but it gave me more independence. If you don't have one, maybe one of your kids has one. We gave an inactive phone to each of our moms so they could keep it in their cars for emergencies (with the cigarette lighter charger).

Good for you on the crunches!! Its empowering to make any progress at all!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Mel1979
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/13/2008 8:54 AM (GMT -7)   
I was wondering if anyone knows someone who has been diagnosed with Lupus without the skin Rash. I am in the process of a diagnosis, but I have never had a skin rash.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/13/2008 9:37 AM (GMT -7)   

Hi Hester,

I can totally relate to the fear factor!  I would get overzealous after a flare and find I had walked too far and suddenly feel like I couldn't take another step, let alone think I could make it back - terrible feeling - even with my husband along who could run home and get the car - I would feel so bad I was afraid for him to leave me to do it!  Then a back injury inserted itself.  Physical therapist called for walking - which I love - and WANTED to do it, but sometimes that pain would kick in and even if I was only two driveways away it felt like miles.  It eventually reduced my "safety zone" to nil.   I didn't have a cell phone either then, and Rosie's right about the confidence factor it provides.  The anxiety is no fun.

And I did the same sort of slow baby steps to get back to walking.  Each day depends on what I feel up to.  And I decided to stop feeling bad about how little that is some days.  Some is better than none.  I'm not much for stretching - the fibro doesn't like that very much, and I have to be very careful - but I'm taking baby steps with that now, and the crunches that Rosie suggested.  I know it is very true about the our core being so important - giving strength to all our other parts.  

So I'm with ya, Hester!  Working it a little at a time.  Even my physical medicine doctor told me I have to recognize the baby steps as being progress.  Maybe not as much as we wish for - but progress all the same.  I always think of the Tortoise and the Hare....

Have a good day!

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 10/13/2008 9:42 AM (GMT -7)   

Hi Mel,

And welcome to the Forum.  I'm sure others will have some good answers for you.  I have just been asking about the same issue - and it seems that a rash is only one element.  Some have it and some don't - and it can present in lots of different ways, from mild to pronounced.  I'm glad for your thread!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/13/2008 5:35 PM (GMT -7)   
Hi Mel,

Welcome to the forum. Well, for one thing . . . you can't see your own face except when you look in the mirror . . the rash can come and go. I don't even notice mine because its been part of me for so long. But hubby notices for sure.

Second, it is only one symptom out of many. But you are right, it is part of the 11 criteria. Thing is . . . you only need 4 criteria for a diagnoses. . . so you do NOT need to have noticed a rash. Look at the end of my signature for a link to "4 of 11 Criteria" . . . that will explain. If you want more info, try clicking the other links as well.

I hope you'll start a new topic and introduce yourself so the others (who are posting in this topic) can say hello.

Blessings!

Post Edited By Moderator (Lynnwood) : 10/14/2008 8:31:20 AM (GMT-6)


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/13/2008 11:04 PM (GMT -7)   

Hey Mel,

Welcome to the forum.  I do not have the rash on my face, but my face is red.  The redness does not cover my nose however, so I do not have the butterfly rash that many speak of.

Hey Rosie, Lucy

Sometimes I can walk to the mailbox and back easily, and sometimes I can't.  It helps to walk on level ground.  Up hill is much harder, and downhill can be hard too.

I have a neighbor however who is recovering from several heart attacks and a by-pass, and she walks slowly every day.  i might call her and start walking with her if I can.  She has a cell phone I think.

I certainly do want my circulation to be good.

I can't sit or stand for long amounts of time either sometimes, and other times I do ok.  Yesterday was hard because I had to go get my grandchildren who were stuck on the side of the road with a flat tire.  Didn't think I was ever going to get home so I could lay down and stretch out.

thank you for your responses,

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/14/2008 10:36 AM (GMT -7)   

Hey Hester - A walking buddy is just the ticket! - especially someone who is building up strength as well, and understands how some days are worse than others.  I really hope that works out for you!  There was a post that mentioned a "walking video" - I'm going to check that out, too, for those winter days that are on the way.

Take care!

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/14/2008 3:11 PM (GMT -7)   
Hey Lucy,,
thanks for your response.  Haven't had a chance to call her in the past two days.  too busy doing stuff, yesterday a flat tire by my grandson's girlfriend and she was stranded with two of my other grandsons and no lug wrench
 
today my son called me from the beach because someone had maxed his credit/debit card out.  Had to go to where he worked and get an advance check and get it deposited in the bank in time for him to use it today, and so he could get back home.  and pick up kids from school again.  this is family.  It is what we do.  but the pain is almost too much today.  even with arthrotec that I take twice a day, and two ibuprophen.
 
But I will talk to Sandra as soon as I can.  Days that I have to get the kids from school I won't be able to walk.  Hurts too much.  but usually I only pick them up one day a week.  So we shall see.
 
thanks to all of  you again for your continued support, and encouragement.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/14/2008 4:05 PM (GMT -7)   
((((Hester)))))
 I admire your spirit! Your family is lucky to have you.  One day at a time - it's all we can do. 
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

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