What were your symptoms when you were diagnosed?

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jdeet
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Date Joined Jan 2008
Total Posts : 32
   Posted 1/13/2008 7:56 AM (GMT -7)   
i have been reading up on Lupus and I know that all symptoms are different for everyone. Can anyone offer their fist symptoms when finding out they had lupus.  thank you!!!!

momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 1/13/2008 11:08 AM (GMT -7)   
When I was diagnosed my symptoms were
 
1. achy, swollen joints
2. extreme fatique
3. sun sensitive
4. oral ulcers
5. low WBC count
6. pos ANA
7. hair loss
8. dry mouth, eyes (diagnosed w/sjogrens same time)
 
I'm sure there were more but thats all I can remember right now.  HTH!
Lupus and Sjogrens Syndrome since 1995
 
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 1/13/2008 2:41 PM (GMT -7)   
Flu-like body aches, painful joints, rash across face and chest and back of hands, sun sensitivity (causing rash joint pain and fatigue) debilitating fatigue, oral ulcers, hair loss, dry mouth, erratic and heavy periods, painful bottoms of feet, headaches

jdeet
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 1/13/2008 5:43 PM (GMT -7)   
hummm  alwaysrosie...  my brother had that pain in his feet...  when his feet and ankles were swollen...  he was in so much pain that he wanted to go to the hospital in the middle of the night.  but that leaves him with only 2 symptoms of having lupus.  I see you both had a lot of symptoms.  how often were the ulcers in the mouth?  how long did they last and how often did you get them?  What is "Pos ana" 

KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/13/2008 5:48 PM (GMT -7)   
What exactly are oral ulcers? Are they like mouth sores/canker sores? Do they hurt?

jdeet
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 1/13/2008 6:26 PM (GMT -7)   
KaAl.  I was wondering the same thing..  are they just ulcers inside the mouth or can they form on the lips (like cankersores, feversores)

Audrey Ann
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Date Joined Jul 2005
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   Posted 1/13/2008 6:30 PM (GMT -7)   
Positive ANA is found through bloodwork. You can have a psoitive ANA and have lupus or not have lupus. You can also have lupus with a negative ANA. It is not a definitive test. A diagnosis is tricky and a trained rhuemy will need time to do some detective work. My lupus symptoms were as follows:

Extreme fatigue; itchy rash all over arms, chest, legs and back; low-grade fever; hair loss; protien in my urine; extreme sun sensitivity; painful joints; inflammation of fingers, wrists, and ankles which caused carpel-tunnel like symptoms when I slept; and frequent thrush (mouth sores).

It seems like a lot of symptoms. Many of the symptoms came on slowly and then the fatigue became worse than anything I have ever experienced. When I finally went to the doctor, they found out about the low-grade fever, urine protien, and the high inflammation markers in my bloodwork. With all of this, I am still not testing ANA positive but my family doctor has records showing me ANA positive about eight years ago. In looking back, it seems that I may have had lupus symptoms since I was about 17 years old. I suppose that I went into numerous remissions and, therefore, had trouble coming up with a diagnosis.
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/13/2008 6:50 PM (GMT -7)   
My initial symptoms were very vague - fatigue, weakness, brain fog and some achy feelings - I just didn't feel right. It took almost three years to get diagnosed, but during that time, I developed a lot more symptoms including:

Joint pain and swelling - hands, knees, feet
Frequent low grade fevers
butterfly rash on face
sun sensitivity
mouth ulcers (raised bumps on the roof of my mouth and on the inside of my mouth
hair loss
fatigue
brain fog
headaches

labs included:
positive ANA
elevated ESR (sed rate)
protein in urine
Elevated CRP

I know there are more symptoms that I can't think of right now.

I remember reading that lupus can be a slow progressing disease and that's how it was for me. At first my symptoms were very general and vague, but over time my labs and my symptoms presented a more clear picture that pointed to lupus.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



jdeet
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 1/13/2008 6:58 PM (GMT -7)   
Audry Ann, How old are you now?  You mentioned that you had inflammation of the ankles.  How badly was this inflammation?  Did your ankles look like a pregnant woman at the end of her pregnancy?  That's what my brother's looked like before he was put on the steriods.  I have heard of lupus but this is all knew to me.  Are you living a pretty normal life with this disease?  Do you know anyone close to you that also has it?  How are they handling it?   I hate to hear anyone that is sick.  I'm sorry you have to live with this.  Again, I'm sooooo uneducated about this and/or any autoimmune disease.  I am dreading his test results.  He hasn't gotten the blood work done yet.  Now can anyone answer this question for me, what do you all think?  My brother has the swollen ankles which the dr. said could still be a form of arthritis, he had the dry eyes about 6-8 years ago really badly but hasn't suffered too badly with that anymore and he is definitely prone to getting canker sores on his lips(fever blisters).  now my question is, when he gets his blood work done, what answers doyou think he'll get?  From what I am hearing from you guys is that it's soooo hard to diagnosis.     thank you all for responding.

AlwaysRosie
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Date Joined Jan 2005
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   Posted 1/13/2008 7:41 PM (GMT -7)   
Hi jdeet . . . sorry sis . . . unless there are some specific markers (there are specific patterns when there is a +ANA which can help with a dx) in certain blood work or a positive biopsy (not needed in his case because he doesn't have kidney or skin involvement) . .. it can take a long time to dx. BUT, the good news is .. . it seems that his symptoms are just as treatable.

Please know that he could have a bad flare like this and then it could go away and never return. Or, more likely, it could go away and not come back for a long time.

IF it is lupus, it would be beneficial for him to live a lifestyle of balance between activity and rest. The rest is really important for us because it helps prevent flares. Each member here can tell you how we started out fighting this disease like crazy . . .just pushing ourselves physically to keep up the pace of a busy lifestyle . . . but we each find out the hard way that we are WAY better off when we pace ourselves.

I hope you'll keep us updated about your brother . . .and give him a hug from Rosie!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 1/13/2008 8:13 PM (GMT -7)   
My symptoms were:

extreme fatigue
joint pain
mouth sores inside mouth, roof & gums
headaches
sun sensitivity
nausea
diarrhea
hair loss
Did I mention extreme fatigue????

Positive labs -- ANA, Anti-SSA, low C3 and elevated SED
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/13/2008 8:27 PM (GMT -7)   
what do the mouth sores look like? Are they like canker sores?

Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 1/13/2008 9:56 PM (GMT -7)   
fever blisters and cancer sores are quite different. then there are some lupus mouth sores that are a third kind of different.

the best thing to do with sores (and rashes) is to take a photo (as close up as you can get) and show it to your doctor. they will be able to tell the difference -- this is one of the cases where "a picture is worth a thousand words" is definitely true!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


omega
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Date Joined Jan 2007
Total Posts : 607
   Posted 1/14/2008 3:45 AM (GMT -7)   
I had sawollen feet w/o any reason b/4 diagnosis.  Then I had Raynaud a year b/4 diagnosis.  And I have a rash after suntanning; then I am diagnosis as MCTD and then later on it's lupus.
Most symptoms are
joint pains
Raynaud
rash (when flaring only)
Mysotitus
serious mouth/viringal ulcer (when flaring)
 
I forgot some others.  Everybody is differernt and hard to say sometimes.
 
DX SLE 1988; Pred 10mg, Cellcept 2500 mg, Verapmil 120 mg (for migraine headaches), Famotidine 20 mg BD, Volteran 150 mg (temporary), Calcium + Vitamin D 1200mg


Audrey Ann
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Date Joined Jul 2005
Total Posts : 815
   Posted 1/14/2008 4:23 AM (GMT -7)   
Hi, again, jdeet! I am 46 now and, by the time I had made it to the level of symptoms when I received a diagnosis and, then, treatment, my ankles were quite swollen. In looking back, my symptoms started at about age 17 and I was 40 when it became apparent that I actually had something more serious. I suspect that I had many remissions in that time period and this is typical of lupus. There is not really anything preventative your brother can take to prevent full-fledged lupus - at least not anything I am aware of at this time. Like Rosie says, we all fight this until the last moment and try to maintain as normal a pace as possible. It took three years (age 43) for me to receive a diagnosis and treatment.

Currently, with the help of medications, I can keep a full-time career and enjoy some personal fun. I am vey careful to pace myself but, if I push too hard, I really pay for it in pain and extreme fatigue. My husband is very supportive and my children are both in college now so this is all a possibility for me. I can tell that I cannot keep up even this pace for too much longer. I hope that I can make it four more years so that I can retire with my full 30 years in education.

As for your brother, I cannot tell from your description if he has lupus. If he does have the start of lupus, he needs to keep a journal of his symptoms and keep at least a yearly appointment with a rhuemetologist to keep on eye on the progression. Every lupus patient is very different. A rhuemy will appreciate detailed notes from him to help in the detective work necessary for a diagnosis.

Good luck!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 2/8/2008 9:44 PM (GMT -7)   
Bump!!

Up you go for Jenises!!!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Jenisis
Regular Member


Date Joined Jun 2007
Total Posts : 339
   Posted 2/9/2008 8:45 AM (GMT -7)   
Thank you AlwaysRosie, this was very helpful.

Now I'm tetering on Lupus, Fibromyalgia, Lyme Disease and Lymphoma


Needless to say, I'm scared.
Brainfog is cruel.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/9/2008 9:27 AM (GMT -7)   
Hi Jenisis,
   I had symptoms for 13 years before being diagnosed that ranged from mild to moderate.
   When I did finally get dx'd, at that time my symptoms were:
Extreme fatigue
All over body aches
Joint pain
Rashes on face, chest, forearms and thighs
Pleurisy
Headaches
 
   Good luck and please keep us updated. You will be in my thoughts and prayers.
                                                       Babs
 
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


lifesworth living
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 2/9/2008 3:20 PM (GMT -7)   
hi jenisis, i started with a red blotch on my forehead it was tiny and i didnt think much of it , it grew slowly and then made 2 blotches. i would have leg pains so bad that it felt like a sprang just lasted a few days at a time. that was about 5 yrs. ago. i went to a dermy who did a biopsy and said lupus, then a rhumey says no, all blood work has been neg. my symptoms have gotten worse. i have corpule tunnel in both hands, i get very tired, my legs hurt mainly at night, my hands tingle and sting, i have a red dtty rash on my upper chest, i have pain in my neck.i am just learning to not push myself to hard.i still have no dx. it can be confusing.good luck to you and keep your head up,sheshe

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 2/9/2008 7:21 PM (GMT -7)   
The very first thing that happened to me was pain in all of my joints..... then, I got this awful pain that would move around in my chest.... that lasted for ever....got infection of the sclera...on the eyes... that was most painful.... My symptoms were ALL very painful.... the tops of my feet.. I could not walk sometimes... the only thing that helped me was hot water...

phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 2/9/2008 7:51 PM (GMT -7)   
For me I couldn't walk anymore, I found my self not being able to get myself up out of bed, tried all the time. Then I got a letter from the Red Cross telling me that I could that donate my platelets anymore. So, I carried myself to the doctor for a check-up and here I am 5 yrs later.

Take care of yourself
PLAQUENIL, FLEXERIL, CELEBREX, CYMBALTA, BENICAR, ALLEGA, SINGULAIR, PROSCAR, LEVITRA, METROGEL, PORTONIX, NASACORT, CALTRATE-D, CENTRUM AND CREAMS
Enjoy what you can today and leave the rest for another day.
 
Frank
 

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