new 2 healing well....questions about lupus

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karen g
New Member

Date Joined Sep 2013
Total Posts : 3
   Posted 9/9/2013 3:45 PM (GMT -7)   
Hi very new here tody first time....ok found out about 6 months ago i had lupus, after being hospitlized with a blood clot in my questions re about lupus.....yes dr told me i had it but didnt tell me what was happening.....well 2 make long story short.....everytime i am outside for any length of time....i get extremely spots in my vision...rapid effect feeling. Like i am going 2 pass out with a major thirst for water....weird bc i have never been a water dri nker...afterwards i feel completley drained No energy and extremely exhausted......can anyone help me.

Elite Member

Date Joined Jul 2009
Total Posts : 13857
   Posted 9/9/2013 7:49 PM (GMT -7)   
That is the usual response to the sun many of us get. It's called photosensitivity.
I'm very sensitive to UV rays and have to avoid everything that emits it.

Be sure to read up on it at it's very informative.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2879
   Posted 9/9/2013 8:38 PM (GMT -7)   
Hi Karen:

Welcome to our forum, sorry to hear that you have lupus. It's a bummer, but certainly not a death sentence in anyway. Lupus affects each of us differently some cases are so mild the patient doesn't need medication and others are so severe that they are on tons of medications and such.

Joy gave you the web address for the lupus foundation and you should go and read up on lupus. The reaction you're having is a very normal reaction for lupus patients. We are very sensitive to the sun and should avoid the sun as much as possible. I know when I go out into the sun my skin feels like it's burning, I become fatigued, nauseated, and feel like I'm going to pass out too.

I've had lupus for 26 years now and we can have so many symptoms and since your new to the disease, I would recommend that you keep a journal describing any and all symptoms you are having. This way when you see your Rheumy you can show it to him and he'll know better how to treat you.

Has he started you on any medications to treat your lupus? The folks here are all great people and loads of knowledge here, so ask away on questions. Someone is bound to have an answer one way or the other. Again, welcome and I'm sorry that you've got lupus.

DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

karen g
New Member

Date Joined Sep 2013
Total Posts : 3
   Posted 9/10/2013 12:41 PM (GMT -7)   
Well....i sorta quit going 2 drs didnt figure they could help....i have an appt thursday am with primary....going 2 talk 2 her......the dr i was seeing was a hematologist....all she did was tell me i have lupus and sent me 2 a surgeon for my one told me about lupus just a really good friend of mine....i have fibro also n i know l lupus is mimicked in some ways 2 that....but the sun thing is driving me nuts....i have always been an out doors kind of just happened again with me ending up thank God in the bathroom throwing up......i am sick of

Forum Moderator

Date Joined May 2005
Total Posts : 6337
   Posted 9/10/2013 3:03 PM (GMT -7)   
The Dr who can diagnose and treat Lupus is a Rheumatologist. Other docs, like Primary, Hematologist, Surgeon, etc are not trained to diagnose a tricky disease like Lupus or other similar auto-immune diseases.

Lupus is not diagnosed by any one test -- it is very tricky and you need to have at least 4 of 11 indications of Lupus before a reputable rheumy will diagnose you. Many times a clear diagnosis takes a year or two to present itself.

In the meantime a rheumy will probably start you on plaquenil and/or prednisone to slow development of the disease and get the inflammation from the disease under control.

One way to get a knowledgeable rheumy is to visit, locate your local chapter, then call and ask about what local Drs are on their advisory board. These are the Drs most interested in and experienced with Lupus.

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

karen g
New Member

Date Joined Sep 2013
Total Posts : 3
   Posted 9/10/2013 3:16 PM (GMT -7)   
Ty....i will do does it sound like i have it with my symptoms....i know your not a doc but u really sound informed.....i have had 2 tell me im wondering
Dx: lupus,fibromyalgia,spinal stenosis,degenerative arthritis in spine, and more....:-(, meds: fentanyl 50mcg Patches, loratab, pravastatin, clonipin, venlafaxine, neurontin, dicyclomine

Forum Moderator

Date Joined May 2005
Total Posts : 6337
   Posted 9/10/2013 3:24 PM (GMT -7)   
What are the Symptoms of Lupus

Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.

The most common symptoms of lupus, which are the same for females and males, are:

extreme fatigue (tiredness)
painful or swollen joints
anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
swelling (edema) in feet, legs, hands, and/or around eyes
pain in chest on deep breathing (pleurisy)
butterfly-shaped rash across cheeks and nose
sun- or light-sensitivity (photosensitivity)
hair loss
abnormal blood clotting
fingers turning white and/or blue when cold (Raynaud’s phenomenon)
mouth or nose ulcers

Many of these symptoms occur in other illnesses besides lupus. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.
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