View Full Version : New member....looking for some support.
10-31-2008, 10:35 PM
Hello everyone :D .....it's so good to be here. Let me introduce myself...I'm Thinkingrl and have not been diagnosed with Lupus as of yet.....have been sick on and off for years, but it has really gotten me down this time. Have been dealing with the rashes that I've thought were allergies for years on & off, terrible fatigue, been diagnosed with arthritis as of this week and have started on anti-inflam. meds. & dealing with tons of joint pain & have had more infections (bronchitis, you name it than I care to remember ). I have had so much bloodwork, xrays, etc....in the last two weeks....and have yet to hear back.....I hope to learn some things here & have been reading thru your forums each nite ...so I thought I would join. I'm sorry this is kind of a negative post....I am really a positive person..but I somehow thought you all would understand.
11-01-2008, 01:21 AM
There is NO need to feel sorry for a negative post! LOL I have been where you are....probably will be again.
What anti inflam do they have you on?
I am not diagnosed with lupus as yet. I got slapped with arthritis almost two yrs ago. I take arthrotec 75 and plaquenil.
It takes awhile for these meds to build up in your system and sometimes you have to try a few before you find the one or the combination that's going to work well for you.
I wear wrap around soft sided tensor braces when I'm driving or doing house work or working out. (yes I work out and you should and will too) It's important to keep the joints moving and to build up the muscle around the joints.
Once you start to get sorted out with your meds and little tricks that help you to function better, you'll be surprised at how much better you feel.
Welcome to the board and feel free to whine scream cry laugh...but just dont talk about Charles Dickens :lol: there's word filter program here that cracks me up.
Every one here is very nice warm friendly and supportive.
11-01-2008, 07:47 AM
Welcome to the forum. My name is Kathy and I have SLE Lupus. I don't think that your post is negative. I hope that you get some clear answers as to what is happening with you. If it turns out that you do have Lupus, they have some really good medications that will help you to feel better. There is no cure as of yet, but hopefully one day there will be. Believe me we have all been where you are at and we all understand. There are several folks that come here that are in the process of being diagnosed. I hope that you get some answers and get to feeling better. Please keep posting. There are a lot of good folks that come in here and they have really good information.
11-01-2008, 12:16 PM
Thanks so much you all. I appreciate your messages. My regular primary doc left his practice, thus sending me to find another doctor. It seems that this may have been the best thing for me. The anti-inflammatory medicine seems to be helping a bit (he prescribed Relafen & Tramadol as well as more antibiotics for another case of bronchitis, a shot of some type of prednisone). I've been dealing with all of this for quite a long time now. Maybe now that there is someone who is actually trying to figure out why i'm running all these low grade fevers, going from one infection to the next, having all these joint pains, rashes......that will help to at the very least, get me the treatment that might help. Just knowing that someone is trying to help me find out the root of all this really helps. And, I have just been reading thru these boards feeling thankful that there is somewhere I can come to in order to learn from others who have been down this path or very similiar paths. Hugs!!!!
11-01-2008, 01:15 PM
Welcome Thinkingrl!! :)
I'm glad you decided to join the forum. I joined this forum since my diagnosis of SLE lupus Feb 2006. It gave me a place to turn to when I have questions, when I need to vent on a bad day, or when I need a friend.
My family doctor misdiagnosed me in the beginning during the time when I was sick with fevers (Id have a fever of about 102F off and on all day for weeks. I was fatigued with no appetite. I lost a lot of weight. My family doctor prescribed me antibiotics thinking I had the flu. The one antibiotic didnt work so she gave me a different one. I was still sick with fevers and still no appetite. :(
I developed a rash on my face, so I made an appt with a dermatologist. I thought a developed a rash from a new facial cleanser I was using. The rash also spread behind my earlobes. Once she saw the rash, she asked me if I had lupus. She was curious, and decided to give me a skin biopsy. And her hunch was correct. I was tested positive for lupus. So she suggested I see a specialist. I went to a rheumatologist, had blood work and urine tests done, and again a positive test for lupus. My urine showed protein in it, so I had to go to a nephrologist. SO MANY DRS! More tests, and now I was tested positive for lupus nephritis.
Fortunately, I was diagnosed after a month of misdiagnosis. It is important to find good doctors who will sit and listen to you and answer all your questions. Find a good specialist.
To make my long story short, after helpful medications and careful monitoring by all my wonderful doctors, I am doing better. Though there is no cure yet for lupus, your symptoms can be controlled with good medication. I do have my good days and bad days, but that's how lupus is; a roller coaster ride, it has its up and downs.
Its okay to be negative sometimes. We all have our bad days and everyone can vouch for that. We are good listeners so whenever you need to vent, feel free to post up.
Be positive and things will eventually get better. Good luck and hope you'll find some answers.
Keep posting up. :wink: :)
11-02-2008, 10:37 AM
Welcome Thinkgirl :lol: Can't give you any better information than what you've received. Just wanted to add my welcome also.
Peace & Blessings
11-02-2008, 12:25 PM
I'm relatively new here myself, but boy have you come to the right place!!
I think waiting for test results is part of the worst. I keep wondering....ok, what else? But there is soooo much comfort to be found here. No one uses scare tactics here the way some people out in the world do, and no one has yet said "but you look fine". :D
Keep us posted on how you're doing, and what the results are!!