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New Member

Date Joined Nov 2007
Total Posts : 8
   Posted 11/13/2007 1:21 PM (GMT -6)   
 Hi, I am 30 years old. I started having joint pain at 13, 2 years after being involved in an accident where I inhaled a large amount of Chlorine Gas. By 15 my fingers, knees, then wrists started hurting. I was hospitalized when a radioactive dye xray showed some sort of activity in my knee, and an aspiration of the knee joint showed evidence of there being almost no fluid in the knee, all swelling was inflammatory. At the time I was under the care of an Ortho, he told us "it's some form of arthri***, we'll have to wait and see how it progresses." He never even mentioned a rheumy. Then at 18 I had a bad case of Mono, and for the last 12 years my body has turned against me. I have the joint pain from the first joint on my body (upper neck) all the way down to my toes. 4 years ago without doing anything to cause it I lost a tremendous amount of weight, I had chronic low grade fevers, my hair started falling out, my already diagnosed IBS got out of control, I started getting getting a slight red rash on my face, I picked up every little cold or infection someone came near my with, I had terrible insomnia, anxiety attacks, and intermittant kidney pain. This all ebbs and flows and every flare up gets a little worse, and to top it all off I have been trying to get pregnant for 2 years and no luck.  Now I am starting to have memory and decision making problems, I blank out alot. The last time I spoke to a GP about this he said "it definately sounds like Lupus, here's a script for a full lupus panel and some other basic stuff a rheumy will want, and a referral." I got to the counter to take care of my co-pay and found out my husbands boss had stopped paying his portion of our medical insurance premiums we had been dropped 2 months before. No Labs, No Rheumy. My most recent flare started with a very frightening episode. I had some pain behind my right knee, for 2 days. The morning of the third day my temp that had already been up a little spiked and I could barely stand the pain. I looked in a mirror and had a red streak running up the back of my leg. Still had no insurance, (husband got a new job we just picked up insurance again) so I drove to a walk in clinic 15 miles away to pay cash. The doctor turned me around and sent me to the ER for his suspicion it was phlebitis (inflammation in the veins of the leg that can cause clotting). So here I was in a new city 3 hours from my family,and my husband was away at work, trying to find the hospital scared to death. It turned out to be phlebitis and a $3,000 bill. I don't know if it was inflammation from the supected lupus that caused it, but considering I am still in a flare that started before that I am assuming it was. I am scared, and getting depressed. My husband tries to understand what I am going through, but it does put a stain on our relationship. I haven't even discussed with him, the memory problems I am starting to have, but I am sure he has noticed that I am struggling to find words like "slot machine" that I would never before had trouble remembering. I know this has been long winded thanks for listening. It helps to know I am not alone.

lupus fighter
Regular Member

Date Joined Nov 2007
Total Posts : 50
   Posted 11/13/2007 2:56 PM (GMT -6)   
Hi I understand how you feel. I have went through similar circumstances. I am 31 years old and I started out with extreme joint pain and swelling, and any cold or flu like sympton would attach itself to me. It took forever to recover. My diagnosis was so hard to receive. I also like you lost a lot of weight in the begining. I understand how you feel and it really will get better!!!!!
Loving Life 

Forum Moderator

Date Joined May 2005
Total Posts : 6942
   Posted 11/13/2007 4:00 PM (GMT -6)   
I want to welcome you both to the forum. We have lots of very active and well-informed members here that are happy to answer any questions or concerns you might have.

Please read our forum rules - link on right side of page in yellow box -- it includes both Do and Don't lists that help us run smoothly.

Also, if you are new to dx or finding a rheumy, the permanent topic Lupus Resources (at top of Lupus page) give lots of tips and ideas for how to document and communicate well w/doctors, as well as explaining a few lab test results.

Glad you found us,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 11/13/2007 6:08 PM (GMT -6)   
Hi. I wanted to welcome you both as well. Shellsis, your best bet would be to begin trying to keep a journal of the symptoms you experience. Lupus can be very difficult to diagnose. It seems you have a good bit going on. Also, list anything you have previously experienced as well. I hope that you can get in to see a doc that can help you begin sorting your problems out. This group at Healing Well will go a long way toward helping you feel understood. I'm glad you found us. Take care and be patient,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/13/2007 10:07 PM (GMT -6)   
Welcome Shell and Fighter!!

Sorry you are having such a hard time with your flare and with a dx. Lynnwood and Sharen gave you some great advice. The links in Lynnwood's and my signatures have some great info . . . well worth reading.

Some hot tea for you!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 11/14/2007 8:06 PM (GMT -6)   
I wanted to welcome both of you also. We have a great group of people here and it's so nice to be able to come to a place where people truly understand what you are going through. I don't have much to add to what the others have told you, I just wanted to say "welcome".
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



Please allow HealingWell to continue helping others by donating:


Co-Moderator: Lupus and CFS Forums

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 11/14/2007 9:07 PM (GMT -6)   
Greetings Shell and Fighter! Welcome! You have found a site that is brimming with support and kindness. I remember being so warmed by the replies when I first joined. It really does help to find out you are not alone. Please feel free to ask any questions or share any concerns. Between us we have experiences to share on almost everything and this is a helpful and sharing group. My prayers are with you!
Audrey Ann
Lupus and RA and LOTS of Medications!


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