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Old 03-14-2006, 02:24 PM   #1
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HandyMom HB User
Exploring the possibility of Lupus...

Hello everyone, I came across this site while searching for symptoms of Lupus. What I have found has lead me to the conclusion it's a very real possibility for me and will be scheduling a physical to see if this is the case.

I'm a 35 year old single mom, with a paternal aunt who was diagnosed with SLE years ago. My sister also seems to have MANY of the symptoms of SLE, though she has not been diagnosed. She has had many problems with endo in the past, and lately has been dealing with digestive, eye (dye eye) and nasal ulceration issues - which I found listed as symptomatic of possible SLE. She gets hysterical when any medical things are discussed, so I'm trying to figure out how best to broach the subject with her.

As for me, I have been dealing with extreme, EXTREME fatigue for the past several days, and have noticed this is kind of a pattern with me. I have also discovered discussion on this board regarding various other complaints I hadn't thought connected before, such as intensely itchy palms, wrists and ankles/feet, low blood pressure, bluing of the fingernails/cold extremities, dizziness/moderate to severe headaches, etc.

In the past year, I have noticed an increase in, or the presence of (and I'm not trying to gorss anyone out, just looking for your input/opinions on the matter):
- episodes of EXTREME fatigue, the kind that makes you feel as if you're just going to fall down where you stand
-frequent nausea
-frequent moderate to severe headaches
-"fuzzy" thinking
-ocassional facial rash that makes the skin there feel very warm (which I had previously attributed to soap irritation, but now I'm not so sure)
-hand and foot itchiness
-ocassional dizziness/lightheadedness
-I have had swollen lymph nodes in my neck/jaw area for as long as I can remember. No doctor I have seen has ever been concerned about it.
-achiness to actual pain in knees, hips, wrists
-heavy frequent nosebleeds that seem to go in cycles (have many for a period of weeks or so, then none for months)
-increased cramping with menstrual cycles, passing of moderately-sized clots
-very cold fingers and/or toes (comes and goes, not a constant thing)
-ocassionally, my fingernails will turn purply-blue, but I do not have the dicoloration beyond this are into my fingers.
-ocassional frothy urine
-ocassional episodes of shortness of breath, usually in conjunction with the dizziness
-lately I've noticed that the hair on my arms seems much sparser than I'd remembered it being. I'm very light-skinned and blonde, so it's hard to see it anyway, but it seems to be much less than it used to be.
-very dry skin. I use a lot of moisturizers, but it doesn't seem to help.
-I have a long history of depression and anxiety...again, it may or may not be related.
_ a couple of years ago, I had some problems with PVCs and "blackout" type episodes that my GP wasn't quite sure what to make of. He did nothing for the PVCs other than an EKG which failed to pick up any, and wasn't sure what the "seizure-like" episodes were. One happened while I was driving and although I felt totally aware of myself and my surroundings, I felt myself slumping over to the side and felt unable to control my body, I just went limp. Another episode happened shortly after going to bed, and it was that same "detached" sensation as well as the sensation of not getting enough air. I could feel myself inhaling, but it was as if my lungs weren't taking the oxygen out. At the time I was taking Wellbutrin, which can lower the seizure threshhold, so I was taken off of it as a precaution. I haven't has anything like this happen since then, although I have had ocassional PVCs.

People in my family have a history of very HEAVY nosebleeds and menstrual periods, which I have seen listed in connection with Lupus, though I realize it's not indicative of the disease. I just have noticed, in reading through websites that list symptoms, that I have enough of them to warrant further evaluation. That's why I'm here, too, so I can learn more about Lupus and its treatment/management. Maybe this isn't my problem, but at this point, I can't rule it out.

Thanks in advance for any advice, guidance and support you're willing to offer me.

~Suzy

Last edited by HandyMom; 03-14-2006 at 02:48 PM.

 
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Old 03-14-2006, 05:23 PM   #2
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Re: Exploring the possibility of Lupus...

Dear Suzy, Welcome. There's a lot of basic info on lupus available here, through (1) the sticky posts (permanent posts) at the top of the Board, and (2) the "Resources" tab above. Plus a lot of ground is covered in our posts here, too.

Have you had your physical yet, or located names of rheumies specializing in lupus/related autoimmunes? When you do have the physical, you could ask for copies of your lab reports & start a personal file.

Good luck getting started! Bye for now, with best wishes,
Vee

 
Old 03-14-2006, 06:42 PM   #3
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Langoley HB User
Re: Exploring the possibility of Lupus...

Sounds to me like you've got a lot of Lupus symptoms; but of course I'm not a Doctor LOL! They will require lots of lab tests, etc before they can make any kind of decision.
Best of luck to you,
Dee

 
Old 03-15-2006, 10:50 AM   #4
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Re: Exploring the possibility of Lupus...

Hi, Suzy. You do have a lot of symptoms associated with lupus and definitely should see a rheumatologist as soon as it can be arranged. You have a lot going on all over your body, as many us of do. But tests to confirm that it is lupus and not something else are a must. What you are going through does sound awfully familiar, though.

All my life, all the strange little things that by themselves meant little, but looked at through the lense of lupus, have great meaning. The severe menstrual cramps I have always had I believe are due to an excess of an inflammatory chemical called prostaglandin, which causes many of the problems associated with endometriosis, which I was also diagnosed with at the age of 24. (There has been a study done that shows how many women who have lupus also have endometriosis.) Something in my immune system changed at age 25 when I suddenly had all these new allergies and skin problems, when I had been allergy-free up till then. One day, I didn't know what an allergy was, then I had this freaky episode where all my lymph nodes swelled up, I felt like a had the flu, I had all these little pinoint blood spots all over my body, and I itched and stung all over. From that day since, I have had allergies. And the only thing that made me get over this episode was a dosepak of steroids. I know lots of people have allergies that will never have lupus, but still.... I had strange nosebleeds. Lockjaw. Dizziness. roaring in the ears, numbness, strange itching, odd skin growths, low blood pressure, feelings like I was getting an electrical shock, episodes of loosing or nearly loosing consciousness, lack of appetite, aching joints ... and on and on. I now believe that these were all indications of lupus. And I do understand what you mean about your fatigue. I remember having to rest while getting dressed. Pull up my pants... stop and rest. Comb my hair....stop and rest. Walk from the bedroom door to the bathroom (like 15 steps)...feel like I am going keel over on the spot, please let me make it to the bed!

I was diagnosed by a dermatologist, as I think a good number of people are, because they run to them with all the strange skin manifestations of this disease, thinking it is some sort of skin condition. The man diagnosed me in like 15 minutes. He took one look at my skin rashes (face, scalp, arms, chest, back, thighs), swollen lymph nodes, my dry lifeless hair that was falling out, asked me a few questions about other symptoms I had been having (I had a written list with me), and said he was sure it was lupus, pending confirmation of my ANA test. I could have kissed him! Though later I would be pretty devastated, at that moment, it was such a relief to have a name for what was wrong with me after dealing with my internist, who had told me that I had a scalp infection.

The day I was driving home from being diagnosed was such a gloriously beautiful April day. Gorgeous red clover in bloom made it look like someone had rolled out a lush red carpet along the sides of the road and the sun was beaming down. I was driving home facing the hot afternoon sun and my chest was exposed. From a drive of about 45 minutes, I got a "burned" area on my chest that is still there two years later. As I read the materials on lupus that I had been given that told me that my love affair with the sun was now over and looked down at the spot on my chest, I thought that things would be different for me now. If you had asked me that day, I would have probably said that the thing that most alarmed me was that my hair was falling out by the handful. Little did I know that my kidneys were already damaged. I think about that day every time I look down and see that dark spot on my chest.

Good luck to you on your way to a diagnosis of some sort!

 
Old 03-15-2006, 11:03 AM   #5
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Re: Exploring the possibility of Lupus...

How many have suffered from Endometriosis? I had Endometriosis and Adenmyosis. I ended up getting a hysterectomy. I read all these posts and I see myself in them but when the doctors do a "global" blood tests they come back fine. Is this normal? They won't drill (so to speak) down the tests and test for Lupus because the "global" blood tests come back fine. Has anyone diagnosed with Lupus had their "global" blood tests come back fine?
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Old 03-15-2006, 11:55 AM   #6
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Langoley HB User
Re: Exploring the possibility of Lupus...

Hey! I've got endometriosis too! I really didn't think it was Lupus related...hmmm very interesting! At this point, I'm on Ovral which is a birth control pill, even though I've had my tubes tied. It's not for birth control; it's for endo control!! It's working well so far. I'm having lots of pre-menstrual migraines though; but, this month I had Imitrex which has been a blessing! If the pills stop working I guess I'm lookin at a D&C and a cervical super hot water flush which my OB/GYN says stunts the growth of new tissue and keeps the endo at bay for 5-10 years or even a hysterectomy. I do not want any type of procedure if I can help it as it seems anesthia can cause me to flair & I try to avoid THAT at all costs!!
So far, the pills are working and I'll go with that for now!
Best of luck to all of us Lupus people,
Dee

 
Old 03-15-2006, 05:22 PM   #7
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Re: Exploring the possibility of Lupus...

Dear Surya, In my "global" blood tests, I was heading slowly towards, then arrived at, B12 anemia. Sometimes my sed rate was off. In past years, my WBC was sometimes also off, though my current drs. never saw that.

Extra tests: (1) Epstein-Barr was wildly high; although it's positive in everyone (or just about), mine was high enough to raise eyebrows. (2) Lyme was repeatedly negative. (3) My ANA always stayed negative, but anti-Ro *finally* turned positive. This is the antibody associated with most (not all) cases of Dx'ed SCLE. (4) Bloodtests done for perimenopause did show I was there, so some drs. wrote off my problems to that (bah!)

Is this what you are asking? And have you actually seen lab copies, to know exactly what tests have been done? Bye for now, Vee

 
Old 03-15-2006, 06:39 PM   #8
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HandyMom HB User
Re: Exploring the possibility of Lupus...

I made an appointment with an Internal Med doc for next month. Now I just want to hurry up and find out, one way or the other, so I can stop worrying about it.

In regard to the endometriosis - I have never been diagnosed with that, but my sister has. She had a total hyst and oophrectomy about 5 years ago. She demonstrates a LOT of the symptoms associated with SLE as well, though no one has mentioned anything about it to her for fear of sending her off the deep end. She already has one foot in the water, it wouldn't take much to send her off.

Aquanegra mentioned "roaring in the ears"...I've had problems with this kind of thing since childhood, though it's more of a medium-pitched whine than a roar. Usually feigning a partial yawn and popping my ears a few times has cleared it.

Has anyone here ever had problems with a "sore patch" of skin from time to time? Every so often, I have places on the backs of my upper arms, or on my thighs where it feels as if it's some sort of blister or ingrown hair, but it isn't raised, reddened, swollen or otherwise different than the rest of my skin - it just is sore to the touch. I have such an area on the back of my left arm right now.

~Suzy

 
Old 03-20-2006, 07:18 PM   #9
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Re: Exploring the possibility of Lupus...

suzy-

the cold extremeties and blueing of fingertips sounds alot like the raynaud's that I have in addition to lupus (about 20%+/- of lupus patients have both). Your other symptoms sure do sound like I had been feeling too (I've just been diagnosed - believe it or not what a relief! - you can start meds to feel better!)

good luck

ann

 
Old 03-21-2006, 08:41 AM   #10
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armslee HB User
Re: Exploring the possibility of Lupus...

Yikes, y'all are freaking me out!!!! Ahhh, no not really but I find it really incredible what we have in common!

I have had the high pitched thing in my ear periodically my whole life. I have always thought of it as my internal sound check,

Regarding the endometriosis discussion....... I had a pelvic ultrasound last Thursday and while I was diagnosed with having Chronic Cystitis, my doctor also said that my uterine lining was very thick and endometrial. He noted that I had two fluid filled cysts in there as well. He believes that a combo of the cystitis and the enlarged uterus is causing my pelvic pain. He is going to scope them both in May.

I honestly think that a smart doctor would read these message boards and could really learn a few things don't you????

 
Old 03-21-2006, 09:08 AM   #11
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Re: Exploring the possibility of Lupus...

Yes, it isn't really a roaring in the ears, but rather a high-pitched whine. When I try to describe it to people, the closest I can get is that sound that you hear when you turn to a tv channel that has gone off the air or the emergency test signal thing that they do on tv and radio. There have been a few times when it started off with the whine, then changed to a kind of roaring wind sound, or sometimes like the sound when the tv is just showing "snow", anybody know what I mean? Those are the times when I feel faint and lightheaded and have to be still.

Would all of this technically be called tinnitus? I think it must all be related to pressure and fluid problems in the ear cannals brought on by lupus. Plus, a good number of people on here have episodes of dizziness or vertigo, which is also a related issue.

This is eerie!

 
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