think i may have lupus...

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sydeetoes
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/13/2010 1:54 PM (GMT -7)   
hi there! so i've been dealing with a strange constellation of symptoms for some time now and was never quite sure of what was going on until i stumbled upon an article about lupus recently. i noticed it first seemed to flare up around the time of my first menstrual cycle (about 11 years old). i've confronted a number of doctors about my symptoms and was tested for blood sugar abnormalities, various cancers, but nothing was ever identified although most of the doctors agreed that something in my body is "off". they have found small amounts of protein in my urine numerous occasions spanning time. in addition i have expereinced:

- a redness around the "butterfly" area of my nose resembling rosacea that does not respond to treatments but comes and goes on it's own
- blotchiness on my body after sun exposure and extreme facial irritation after being exposed to uv light
- insomnia issues- won't be able to sleep for several days then sleep 12-14 hrs when i finally do sleep
- nausea that comes and goes unexpectedly
- weight fluctuations
- severe, almost debilitating fatigue many days but i will have a some days where i feel completely normal
- intense shoulder, neck, and back pain
- swelling and pain in my knees, ankles, and hips that flares near my menstrual cycle
- puffiness and dark circles around my eyes
- excessive thirst and urination (feel "dried out" a lot)
- low grade fevers followed by low body temperature
- feel my heart flutter occasionally
- a slight twinge of pain when taking a deep breath
- easy bruising (people have commented it looks like i've been beat up)
- small shaving nicks seem to gush blood and often soak several band-aids
- pelvic pain/discomfort
- hair loss in outer eyebrows and eyelashes (goes in cycles)
- feel fuzzy a lot...as though i'm in a dream state
- wiry/ course hair...used to have straight, light brown hair but now its curly and blond-ish
- nails turn blue when i'm cold
- cold hands and feet
- menstrual problems- amenorrhea for months at a time
- allergy issues

i have been under a great amount of stress, but it seems like a bit more than stress related problems. i just feel like something is "off". i definitely think i have some sort of autoimmune problem going on. they tested for thyroid abnormalities as well but found nothing significant. do these symptoms possibly indicate lupus? i've been avoiding seeing a doctor to get the specific antibody test because i have no health insurance, am unemployed, and i'm frankly a bit afraid of what i might find out. any advice would be greatly appreciated. thanks for reading.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/13/2010 2:31 PM (GMT -7)   
Please see a doctor as soon as you can. I don't know that these are necessarily Lupus symptoms, but something is definitely going on and the 'easy bruising' and 'shaving nicks..gush blood' can be serious. Excessive thirst/urination & heart fluttering are also serious symptoms.

I also have to ask, how is your eating and what do you weight? A lot of these are symptoms that might mean you are missing out on vital vitamins & minerals. If you really can't see a Doctor try eating "right" (protein, vegetables & fruit, no processed foods or sodas) for a couple of weeks and see what happens.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


sydeetoes
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/13/2010 3:45 PM (GMT -7)   
the funny part is that people close to me actually make jokes about how ridiculously healthy i eat. i am 5'8 and range from 133-145 lbs (however i dropped to 116 a couple yrs ago when i felt the absolute sickest), do light yoga, stretching, and walking when i have the energy (not as often as i'd like obviously), no cigarettes and only a glass of dark red wine very rarely. i eat lean protein, lots of salmon, giant spinach salads, lots of fresh fruit, nuts and seeds, whole grains like oatmeal and brown rice, eggs, flax seeds, and small amounts of dairy. drink only water or herbal tea (caffiene causes me to have severe migraines)...i try to rest as much as i can...i'm definitely not a party gal by any means. i stay out of the sun. i try to relax by painting and writing or playing guitar. i really make a serious effort to take good care of my body. that's why it's so baffling to me that i feel so weak and achy all the time. the insomnia in particular is vicious. 3 or 4 days a week i have absolutely no energy...i just want to lay in bed all day. i'll be 24 in september and i feel like i'm watching my life pass me by. i just moved to los angeles from tennessee and i even managed to be one of the lucky ones who got a job fairly quickly...i feel like i should be out meeting people and having the time of my life but i'm restricted to just trying to get through work and get home so i can lay down...i haven't even been on a date in a year although i'm told i'm exceptionally attractive. i keep having guys tell me i'm gorgeous and smart but they're "bored" with me not being able to keep up with their partying and socializing. i literally have NO extra income at this time to spend on a doctors visit or prescriptions of any kind and no one to depend on for any kind of support....i'm at a loss at where i should go from here...

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/13/2010 3:57 PM (GMT -7)   
Is there any iron & B12 in that diet? Maybe you are eating too lean? I don't know, maybe another member will have some ideas for you.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


sydeetoes
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/13/2010 4:08 PM (GMT -7)   
i do eat lean beef and chicken as well. i've examined my diet but can't find anything i'm missing out on....i'm guessing i will search for a free clinic in the area to get a medical opinion...i appreciate your help though and still welcome any other advice anyone may have

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/13/2010 8:10 PM (GMT -7)   
Do you live in a large city or near a teaching hospital? There is a lupus research foundation in my city that will not charge for doctors' visits if you're unable to pay. Depending where you live, you might check around. Good luck. Lynn's right. You have way to many symptoms to ignore. Hang around here too. It's a good place to get support from others who have many of your symptoms.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


QBEve
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/9/2010 7:52 PM (GMT -7)   

You need to get to a doctor and get what is called an ANA blood count. They are able to look at your blood and see if there is a High ANA count. The ANA test is ordered to help screen for inflammation, such as erythrocyte sedimentation rate (ESR) and/or C-reactive protein (CRP) may also be ordered. I went to see the doctors in May, for an eye infection that was worried to be a staph infection that feared to spread to my brain. After looking at the swelling in my eye tissues, my legs, they then found that I might have Lupus. Through an emergency room doctor/Eye doctor, they found my Lupus. For years I had the symptoms you described. I thought my family thought I was crazy or a hypocon. I cried when I found Lupus, but since, the symptoms worsened.  Being an African American woman in my early 40's, the V.A. and Kaiser missed my symptoms for years. The rashes, stomach pains/joint pains, headaches, swelling and all the symptoms you mentioned were always treated as something else or in my head. It makes me almost go crazy, as I am a Gulf War Veteran. I have enough to be stressed out about, knowing there is something seriously wrong with me.

 

You will have to see a rheumatoid doctor (that treats arthritis). Right now, they have me on Hydroxychloroquine (used to treat malaria). I just started it and it makes me sick (it affects some people's vision, but not mines so far), but so worth the benefits of the pain and malaise. You can go to the Lupus Foundation page for help. I am also taking a pro-pre biotic and a natural treatment called Serra Phase to keep from taking NSAIDS (Naprosyn, Ibuprofen, and anti-immflamatories which can damage your liver over time) and Prednisone (steroids). Do what is good for you. Listen to your body and cut stress out and processed foods. There are no processed sugars in my house, breads, etc. Limit your red meat and especially salt out as much out of your diet.

 

You will start to see a difference. I hope this helps. As I mentioned, I am a disabled veteran as well, so I suffer with other illnesses on top of this. Keep your head up and please take care of yourself. Feel Free to comment and or contact. Take Care! Eve


luv2ride
Regular Member


Date Joined Jul 2010
Total Posts : 463
   Posted 8/14/2010 7:33 AM (GMT -7)   
The outer eyebrow hair loss is classic low thyroid symptom, as is feeling cold and joint pain, etc... have your dr test your thyroid function.
Female
UC diagnosed 15 years ago
Sulfasalazine worked back then. No UC meds for 13 years despite mild symptoms...

2010 - Flare following sigmoidectomy , endometriosis, appendectomy

Currently:
Lialda, probiotics, multivitamin, omega 3, CA/D/Mg
Armour thyroid, Estradiol, Prometrium
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