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May - August 2011 - Welcome to all of the new members!!
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Lupylisa44 posted:
Hi everyone!

I noticed quite a few new people on the board and just wanted to say Hello and Welcome!!!

There are some really old posts that people have responded to and may get lost or overlooked. (lupus roll call, attn all lupies, hives with lupus \)


If you are new here, could you please introduce yourself and tell us a little about your experiences with lupus. Have you been diagnosed? How long have you had it, how it affects you etc...This is a great place to come for information, questions or just to vent.



My name is Lisa and I was diagnosed with lupus nearly 27 years ago. I also have Fibromyalgia, Sjogrens, Hypothyroid & Raynaud's.

Lupylisa
With love, with patience and with faith, we'll make our way.
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ReneeNF responded:
My name is Renee and I was diagnosed with Lupus when I was 11 years old, and now I am 31.
I went many years of not dealing with my Lupus. Lived my life like I wasnt sick at all. But now that I have grown up, I am coming to terms with all this!
Renee

~live life, love, and smile!!
 
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BHLewis responded:
Hello all,

My name is Brittanee. I was diagnosed with Lupus and Sjogren's at the age of 21, which was almost two years ago. It was discovered after I developed severe preeclampsia with my third child and had to deliver him at 24 weeks gestation. Two months later at a check-up doctor's confirmed that I did in fact have these two diseases. I have made the best out of life and will not let this defeat me. I have a wonderful husband and 4 beautiful kids and they continue to be my inspiration as well as motivation.
 
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K2isKsquared responded:
I'm an oldie. I'm 50 and was dxed at 35. I have Rheumatoid Arthritis, Lupus, Sjogrens, Hashimoto's Thyroid (hypo), and Raynauds.

It's great to see so many newbies here. Keep Posting!

K2
 
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currygirl73 responded:
hi! my name is vickie, i have been fight with lupus for 7 yrs.I dont know what to do , Ive gotten tired of this sometimes i just want to give up. i dont want to fight anymore.my kids stress me alot i mean, alot.im a single parent . iI have 3 teenagers, and one 7yr.old.i dont really have the support of family like i really need. i struggle everyday to make it.im always in pain,i take tabs.and they dont work anymore my pain level is very high nothing i take works for me ,what do i do at this point?
 
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sarah020581 responded:
My name is Sarie. I was diagnosed at age 25, I am now 30. I have Lupus and TT&L a genetic heart condition. When I was first diagnosed I became depressed and thought my life was over. I don't responsed to normal steroid treatments. I am in a current drug study and it has helped a lot. Like everyone I have my good days and bad days. I am excited and scarred right now. I recently got married and I am now pregnant with twins.
 
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ghappy responded:
Hi my name is glenda i have had lupus for 2 1/2 yrs. taking plaquenil which has almost completely relieved my symptoms. i experienced joint pain and skin rashes.seeking advice on skin care.
 
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stellarTKR responded:
Hi everyone! I'm 20, and new to the lupus community. Working towards an official diagnosis of SLE, I suffer from rashes, especially on my face, and joint pain in my hands, knees, and ankles. I also suffer from chronic migraines and mild short term memory problems, which may or may not be related. All of my symptoms are made worse by exposure to the sun. I've seen my family physician and have had abnormal blood tests, and have an appointment with a rheumatologist on the 22nd of June.
 
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grandmashome responded:
hi I am new here just found out a week ago although I now know I have had this for 13 years I know when and were it happened I was so sick they told me I had hep c I did a treatment I did not even need I was so sick that whole year was then told I had fybro I also had an GI doctor he was treating me for lots of stomach problem and the whole time they never knew I had lupus I have been sick ever since in and out of the er doctor after doctor just felt like they were not helping me and I was right now I found a doctor who told me what I have the first time I seen him I am not sure what damage this has done to me over the years I had a lump on my back about 2 weeks ago it seemed to be right on the spine this was befor I found out i had lupus it was there about 8 days I now have one of these in my ankle it is swollen like when you sprine your ankle I have not seen your read anything about this yet have you ever had this happen or know anything about this just lookin for some advise
 
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grandmashome replied to currygirl73's response:
.hi vickie I know how you feel i have had this for 13 years and did not even know just found out a week ago and i have been sick for all these years I had been raising to grandkids so I know that feeling of being alone and sick no one seems to understand or care you can tell your kids every day you dont feel well and they seem to not belive it try and find a support group in your area I am now going to get myself in somthing and I know the pain all to well been living with pain all these years I have been on roxicodone for over 10 years it works for the pain but it is very addictive but what can you do I am still in pain you might have to look into a long lasing pain med and then find something for the break through look for a pain managment by you it is hard to do any thing when you are in pain I am now trying to controll my pain now as well as trying to controll the lupus and stress is not good and I deal with that alot I dont have family that seems to care eaither so you are not alone call mental health and they can find you some support good luck and if you would like to talk get back to me take care and god bless
 
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MarySings responded:
Thank you for the welcome!

My name is Mary and I was diagnosed with drug-induced lupus about 3 years ago. After I stopped taking minocycline, my symptoms went away.

Three months ago I began to develop intense pain in my elbows, forearms, wrists, and fingers. When I get up in the morning, my hands and fingers are very swollen. For no apparent reason I have been having dizzy spells off and on throughout the daytime. I've fainted twice. Now I have the butterfly rash. I see my rheumatologest on Thursday and I wonder that she will diagnose - lupus? rhuematoid arthritis? My personal physician says she thinks I have lupus.

I was diagnosed with fibromyalgia in August 2002.

Mary

Caution!! Be careful if you are on Plaquenel. My former rhuematologist put me on Plaquenel and never followed up with blood work. He also did not tell me to see my optometrist every three months. I now have 20/30 left eye vision and 20/60 right eye vision. I should have taken him to court but I am mired in deep depression and couldn't find the energy to do that. In my state, the statue of limitations is 5 years so there is still time. If only my depression would lift....
 
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dnamlpi responded:
hi everyone, i have been dx with fibro, ms and a postive ana test result, which i find out more about tomorrow. nervous about the result. but i think, for some reason, its so important to have justification for how your feeling, since most people don t understand. feel so alone......hear people talking about her going to sleep already....smile. etc. tying to work but finding it harder and harder. i am 55 and know i have had these problems for at least 25 years. doctor to doctor. can someone please listen
 
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catrinaN responded:
Hello everyone, My name is Catrina. Just diagnosed this week. Feeling a bit overwhelmed and relieved at the same time.
 
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Margareth8537 responded:
Hello, I'm Margaret and see to be one of the few from across the Atlantic. I live in the Lake District in the UK.
I was diagnosed with Lupus in 1995, when I thought I had been affected by ringworm! For some time topical creams kept it under control, but it gradually started to have more effect. There was a lot of joint pain and fatigue. Working full-time, and hardly able to walk at times.
In 2007 I finally tried hydroxychloriquine (400mg) and after 3 months was able to feel real benefit.
Then in 2008 I was diagnosed with breast cancer. After surgery there was some concern about chemo & radiotherapy because of the Lupus, which was flaring, probably because of stress. After gene tests it was recommended that I have the full scope of treatments. I think that because I was so used to the fatigue that comes with lupus, I coped with chemo very well. Also, some of the drugs can be helpful to lupus patients, but we aren't normally given them because of the side effects.
I only see my oncologist on a 12 month basis now, so that is one less.
I am on 5-10 mg of Prednisolone (Prednisone in the USA) as flares are quite frequent, but I notice them mainly because of the fatigue level.
That's my history, anyway.
When I have been visiting hospitals and clinics on a very regular basis, there is always someone who is so much worse off.
My best wishes to all of you out there who are finding it difficult to get through the day.
Margaret
 
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cardkri responded:
Hi, I was "Officially" and finally diagnosed with Lupus 6 years ago. I have also been diagnosed with Sjogrens, RA, Alopecia, Fibromyalgia, Anemia, Crohns. Oh, I should not forget Depression as over the years I have heard that diagnosis many times.. Wonder why?

I have suffered since I was 13 years old with all of the symptoms of these diseases since then but doctors could never pinpoint the exact cause. I suffered 13 miscarriges and managed with the grace of god to carry three pregnecies to term. I am now 49 and have two beautiful grandchildren.

I have always worked two- three jobs to support my family as my husband became disabled a month after we were married.

I have joined this board for the support needed for those times when I just want to finally give up the fight.


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