View Full Version : Some feelings Im having....and learning about this disease

11-16-2007, 02:02 AM
I have tonite read some of the posts here. I have not before now because I am afraid to read about this disease and to learn more about what will happen as time goes on. Also sitting here at the computer is very hard I can only be on for a short time as I cannot tolerate sitting to long.

My diagnosis was with a ANA test and muscle/joint pain and weakness, extreme fatigue and a rash on my shoulders, back and face. I have the butterfly rash on my face and had a white, raised, itchy rash on my back.

I do believe as I read more that I most likely have had this for quite sometime. (years) The aches, pains, sun sensitivity and even the Chronic bronchitis I have and the fact that EVERY upper resp. infection I get turns into pneumonia.

Right now I am dealing with the muscle/joint pain, intermittent pain thruout my body. It never stays in one place. This second it might my left wrist, the next my shin, then shoulder and then knee etc. Well I think you get the pic. Is what I am experiencing now a flare up? I have had rib pain also. I get a sort of buzzing in my feet. What is that? The pain is so bad I cannot walk. I am mostly bedridden and definitely housebound.

I read about hair loss too. Is that a thinning of the hair or an actual chunks coming out and being left with bald spots? That makes me so sad.

There was one other question but I cant remember it now. Oh yeah brain fog and mental confusion big time. Anyway I guess that is it for now.

Thanks for listening. Kasey

11-16-2007, 06:58 AM
Hey Noodlemom! :)

I have hair loss. Except it's not in patches that leaves bald spots. It's a rather over all thinning. Also, the way my boyfriend describes it is that it'll grow, but it won't grow long. It stays short. That's the way he describes it. I actually started losing my hair about 6 to 7 years ago. In the last year it has accelerated in an alarming rate. I'd cry. I am desperate enough to look for wigs. It is that bad.

I too have always had a strong response to getting sick with the "cold" or "flu." My have critically low neutrophils, which are your first line of defense against infection. They're like the first dropped ground troops on the way to meet the enemy. :wink: And I have virtually none of those. So I have to be careful.

So careful that, get this, I went to a "game night" at work. Someone who was sick borrowed a game accessory of mine. I didn't know it until AFTER I saw him using it, wipe his nose with his hand, and then wipe his hand on his jeans. Then I heard him sneeze. And there's the worst part, HE TOUCHED MY GAME ACCESSORY! I was livid! This was a whole bunch of coworkers and I was trying to be polite. No more will I take my game accessories. NO MORE! That was just so nasty and disgusting.

What, what would you know? 4 days later I got sick, and now here I am trying to fight this off. The minute I knew I was sick I called my internist and she prescribed a ZPack for me. She's awesome with that.

Considering that I'm immuno-compromised, I want to vomit. Not to mention, that same game accessory was being used by someone else that when I left to get it because I wanted to go home, I found droplets of his sweat that were BLACK. DO PEOPLE NOT WASH THEIR HANDS?!? Why are people so disgusting????

NoodleMom, One thing to consider, and don't let this bother you about whether you look silly. Considering how ILL I can get I don't care what people think. When you are using public restroom, use towels to turn off the water faucets after you've washed your hands. Also use towels to open the door as you leave the restroom. I had already started this practice when my internists suggested it. I told her I was doing that and she said "Good! Now use the towels to turn off the faucets too." I added that into my routine as well. I know some people have looked at me funny, but frankly, I don't care. They don't have to deal with what I have to deal with.

If you ever have a chance and are in a public restroom, take a look at how some women wash their hands. It's actually pretty nasty. Some just let water run over their hands, some just get the finger tips wet, some dont' even wash their hands. When you think about having a compromised immune system and how what you can't see CAN and DOES hurt you, the world completely changes.

I get the brain fog, the "brain farts," confusion. I am a computer programmer. I used to be able to sit for hours, sometimes over 24 hrs, at a time and be totally focussed on what I am doing. I love programmign computers. However... brain fog, inability to remember what I'm doing, what I just did, or how to do something - it's totally frustrating. It's scary too. Because this is my bread and butter. My productivity has gone way down. And I haven't even mentioned just simple day to day living.

I dont' get skin rashes, but I'm VERY VERY sensitive to the sun. My eyes hurt a LOT. And then there's muscle pain. I just have dull pain everywhere all the time.

I gotta boogie to work, but I wanted to respond. I was diagnosed by having the rheumatologist listen to my systems, see my blood work and very high ANA and diagnose me that way.. He did blood tests but those came back normal with a high ANA. Oi. But he still believes I have a very mild form of Lupus and still wants me to take Plaquenil. And after reading the boards here for a couple of days and finding that others are diagnosed with "normal" blood tests, I'm feeling more confortable with the diagnosis. Really, I just wanted answers for why I was feeling the way I'm feeling.

Take care! And feel free to write any time.

11-20-2007, 06:48 AM
Hi NoodleMom;

Yes, that moving pain is weird, isn't it? The first time I told my doc he just gave me this blank look....then luckily (since he'd had a fabulous rotation with a great rheumatologist) he sent me for the right tests. I was diagnosed within a few months of my initial significant complaints.

(I'd been complaining of fatigue for years....but the pain was relatively new) My hair has thinned a bit - for me it is mainly a receding hairline on one side....pretty well covered by bangs. It seems to have stopped, so I'm hoping to hang on to what I have for a few more years!

All in all, by changing my diet to a more "Mediterranean" diet, VERY low in protien (only fish, beans, nuts, grains) high in fiber, veggies and fruits, only oil I use is olive oil. and by continuing to exercise (a LOT less intensely!) and get rest, I'm doing well. I consider myself blessed...

You're in a good place here, welcome.

12-26-2007, 09:59 AM
My hair has been thinning for years. I didn't really pay much attention at first, noticing more hair in my brush than usual and my forehead got a bit higher, but, just attributed it to age and hormones. I figured it would grow back. My hair was always very thick, and stylists commented on my thick hair.

Well, for the past few years I have noticed that not only is my hair all over everything, yuck, on my clothes, and furniture, my car head rest, but, when I take a shower and run my fingers through it, I can actually come out with a lot of hair clinging to my fingers. Then I went to a stylist last year, and asked her about products to clear up the dryness, and she commented that people with fine hair like mine use such and such. FINE hair!!! What happened to my thick hair? Now I have fine hair. Ugh.

I still have very long hair. It's still pretty. I do have to deal with the dry brittleness, but, at least I still have a lot of hair, albeit fine hair. I try not to overbrush it, and to not overwork it with products and styling. Just go as natural as I can. I am not at all sure if that will help or if it just keeps my hair from drying out anymore than it would otherwise. My hair is still falling out, but, so far, no bald spots or scalp showing through.

So, even if your hair is falling out, it is not automatically a death knell, nor is it a guarantee that it will keep falling out. Some people seem to have the experience that it falls out in patches, and others that it continues to the point of baldness or near baldness, while others have little obvious effect, and still others fall just about anywhere in between. If only there were a specific projection for symptoms of lupus, life would be so much easier. I could just wait for the next predictable symptom. Sigh.

12-27-2007, 02:14 PM
my hair statrted to fall out when my rash first startd poppin up, I thought i was imagining it! I too have always been complemented on my thick beautiful hair and now it looks thin and brittle, I know its growin becasuse I havent died it in almost 7 mths and can see where the new growth is, but it doesnt seem to be getting any longer.
my mom says its cuz i died it so often when i was younger but come on i have died my hair what maybe 3x this year? ( thats nothing when I nornally get my hair died every other couple of months)
ever since this first flare up of lupus? ( well they havent diagnosed me yet but i am convinced)

I wonder tho i used to get what i thought was psorisis on my scalp but now am thinking it might be discoid on my head? small bumps that itch and hurt and flake off.. ( its gross) but any ways i know that when i was on high doses of prednizone that this stopped. Ironinc? I think not.

12-28-2007, 07:36 AM
I think you are right about the hairloss being lupus related. Mine is just thinner all over but I read something about what you are describing and it is common. Hair dye can only effect the dyed hair according to my stylist. Check with a dermatologist to see if there is anything that can be done for the rash because from what I have read the scar tissue is what is killing your hair follicles. I don't know if it will do any good but it might be worth looking into. Lets face it hair IS a serious issue for us girls. PJ

01-05-2008, 10:30 PM
My nurse said she takes flaxseed oil capsules for her hair. That hairloss for women was common in her family, that the flaxseed premotes hair growth. I decided to give it a try. :) Maybe it'll help?

Darlene B
02-10-2008, 07:53 PM
Hi Kasey, I just noticed today that my hair is filling in on my hairline at the forehead.I was so excited.Perhaps it is the med.Also, I too get the periods when I feel like I have ADD or something worse.I go through 3 or 4 days when it is really bad.For the most part, my short term memory is just not the same.I had an MRI a while ago before the dx when I was having reaccuring vertigo problems.
I hope you are feeling good enough to go out soon.

02-19-2008, 02:03 PM
I DID lose my hair to the point that I had bald spots and looked painfully bad. I wore a wig for nine months, which was WONDERFUL! It was very comfortable and made me feel pretty instead of like an ugly freak.

Try www.headcovers.com

sick n tired
02-25-2008, 11:41 PM
hey Kasey,

My hair loss was in patches. At first I thought that it was all in my head...no pun intended...but like Teresa when it started falling out even when i run my hand through it I realized that it was more serious. I thought that it was a thyroid problem, but alas, it was worse. Plaquenil is supposed to help that...Are you on that?

I also have intermittent pain. My doc says that I have fibromyalgia. He thinks that is where some of the pain comes from. I really don't care where, i just wish it would end.

I hope that your pain comes to a long remission.

Have a painless day,


03-05-2008, 06:42 AM
Hi, Karen,

no i am not on plaquenil. my meds are lyrica and ultram and high dose of
im in a ton of pain today and hving
some difficuly with typing
sorry this is a mess

sick n tired
03-12-2008, 04:15 PM
Hey kasey,

I am sorry for the delay in my seeing the post. Ive been sort of preoccupied lately.

I know that you were in a great deal of pain when you typed your last text. I am hoping that today is much better and that you will find that the flare begins to recede.

Many cyber hugs from me,


03-13-2008, 05:48 PM
I'm curious to know if you gave that a try. My sis has always had such thick hair, but she say's it's started falling out.