Lupus Forum - New And In Need Answers??
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New And In Need Answers??

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lexis214

New User, Becoming EHEALTHy
Joined: 04 Jul 2005
Posts: 2
Location: Houston,TX usa
New And In Need Answers??
Posted: 07-04-05 09:06am

:shock: I am in shock. I think reading your post made me feel like I am not alone. I am new here and have just been browsing looking for the right time to say something.
All your symptoms I too have been experiencing. You didn't mention any itching or skin rash? I have them awful. My arms are beginning to look like hamburger from so much scratching. The sores are like little holes with raised edges. When I scratch, instead of alot of bleeding, I have clear stuff like that of a blister ooze out.... Gross hugh?
I am 33 and had to have unexpected open heart surgery last september to replace a damaged valve. They told me the valve appeared to be damaged from a disease or rheumatic fever. Both of which I never had. Over the past two months since some lab work showed positive ana and high protein in my urine, I think we are leaning towards a diagnosis of lupus. I need to find a rheumy doc now so I can get a definate diagnosis and maybe they can do something to make me feel a little better.
List of symptoms>
*raised rash on my forehead thought they were wringworm/s. Size of a quarter began in jan. 05. Also itchy bumps on forearms that are the size of bites,they feel ho sometimes inflamed with pain to the touch and then comes severe itching.
*fatigue- noticed in feb. 05 and has progressed. I can't drive more than 5 min. I fall asleep on the toilet, in the office chair(once I fell to the ground), standing up in kit(husband found me with eyes closed). Any time I get still I fall asleep but jerk when going to sleep. I never wake up feeling rested and like I had a full nights sleep. I also wakeup wet from sweat. Staying busy and energy drinks is what keeps me awake.
*chest pain and short of brath began in early 04. Finally doc said open heart sugery needed immediatley to replace stenosed mitral valve and releive pressure on my lungs. Done in sept 04. Still have weird pains when I breath deeply.
*tounge is always raw and hurting. Sometimes it gets like ulcers that are painful. Teeth have become so sensitive that anything cold sends chills down me and hurts really bad. Sugary items are painful to eat. Like my mouth is full of cavities.
*swollen lymph nodes in my neck and a couple under my arm.(not painful) but my throat stays sore in a weird way. Sometimes there is something stuck and it feels awful to swallow.
*i have started to notice thtat the sun makes me more tired and an overall uneasy feeling of exhaustion. I also tend to itch more.
****** :? Sorry I just cought myself asleep :? ******
*certain areas ache severly . Tailbone has been inflammed and very painful for 2 years. I moan in pain from sitting to long. Swollen huge painful joint on my big toe. Bottom of feet hurt often. Knees, wrist and fingers hurt often. Sometimes my fingers go numb and tingle.
*abdomin pain sporadically appears and is so bad I can not move or stand straight. I also swell in my abdomin. I am a small frame person of about 112 pounds and sometime the swelling looks like am pregnant and my weight will increase by about 5-7 pounds.
Sorry to ramble on about me but I thought it might be helpful to know if any of us experience the same thing.
I have so many questions.I don't really want to go to the doc, I am sick and tired of being sick and tired. I do know that ultamantly I will never get better without seeng a specialist.
Please anyone reply with any advise or tell me what you think about the way I feel.
Pj ...I hope you start to feel better and also I hope you get the answers you are looking for. Email me any time and we can maybe begin to help one another

can anyone tell me how long a flare last and when I might start to feel better? What kind od treatment is to be expected and ehat is the best treatment?

Thank you,
angie
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kait77

New User, Becoming EHEALTHy
Joined: 29 Jul 2005
Posts: 13
Hi
Posted: 08-03-05 16:00pm

Sorry to hear about your problems I have some advice. 1) take pictures of all rashes 2) see a dermetologist as well as a rhuemetologist 3) find a kidney specialist too 4) tell your doctor about the lung pain on a deep breath (could be pluersy or something else but likely requires treatment) 5) the doctor may or may not diagnose right away depends on how cautious they are 6) you will likely have to take plaquenil/steroid/chemo drugs or any combo of the 3 depending on kidney involvement and disease severity. I am not a medical professional but this is what I learned in my search for treatment. Also otc anti-inflammatories and accedominefin can hurt damaged kidneys as can alchohol.
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ALTINKUM

New User, Becoming EHEALTHy
Joined: 05 Sep 2005
Posts: 5
Location: ENGLAND
Question
Posted: 09-07-05 10:07am

Hi,just joined,came across your message,i was born with a pulmonary stenosis,i will eventually need heart valve replacing,the one leading to the lungs,i have a question do you know if your new heart valve is silicone based,just a thought,because your rash sounds like uticaria not sure how to spell,this is large hives feels inflamed then itchy,i have suffered with this myself after having an alergic reaction,did you start having rash after your heart surgery and if so how soon after?Maybe you are allergic to food types ie.Wheat,dairy,these can make you feel extremely tired and make your stomache bloat,if you do see a dermitologist sorry cant spell,they still may not pick allergies to food up,you need to keep a diary and oliminate foods then introduce them back to your diet gradually.Oh by the way I am from england I am 34 also petite,61/2 stone and have my two beautiful boys.Hope you are feeling a little better now.Goodluck..
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