Newbie introduction

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New Member

Date Joined Jul 2008
Total Posts : 10
   Posted 9/2/2008 3:44 PM (GMT -6)   
Hi everyone,
I've been lurking for a while and decided to introduce myself.
I am an almost 40 year old "girl" diagnosed with lupus when I was
only 23 yrs. old. I have four kids ages 11,10,9 and 8 (youngest is
the only boy). I have a pretty crazy life with all the kidsa and
adding to it my youngest has a brain injury from having meningitis
when he was only 3mos. old.
I came here to see if any of you have had problems like mine (which
I'm sure somebody has).
My lupus has always been somewhat uneventful. I've had minor flare
ups with arthritis, and fatigue, all over weakness etc. but it has
never involved any of my internal organs so I have been relatively
lucky considering the horror stories I hear.
Back in May I had a wisdom tooth and a molar removed and my life
changed from that day on. I had to be rushed to the emergency room
the night after the surgery b/c I was unconscious. The emergency
room docs told me it was b/c of a percocet I had taken almost 10hrs
prior. I knew that wasn't true but I was in no shape to argue with
them and they sent me home-of course my husband had to carry me b/c I
was too weak to walk but they didn't see that as a problem.
Since then I have been feeling horrible!! I was bedridden for about
2wks after the tooth ordeal. I was so weak, nausea, lightheaded-
always felt like I would faint if I did anything-it was terrible.
Well, three months later I'm at least able to do somethings but
definitely not back to normal.
I saw my docs while I was sick but my rheumy was on vacation and
could not be contacted so I had to go through my family doc.
Ultimately she put me on some prednisone after I had been rushed to
the ER three times. I was on the pred for three days and then I got
my rheumy came back from vacation and took me off of it b/c he didn't
think it was my lupus. He took some bloodwork and I waited almost 10
days and he said I had a little inflamation but not enough to have me
this sick. Then I started with the specialists WOOHOO!!!!
Neurologist-everything fine, put me on Flexeril for muscle headache
which has gotten a little better. Cardiologist-everything fine,
wanted me to keep taking a medicine the hospital had given me b/c I
was in tachycardia when I got there one day but he said I really
didn't need it b/c there was nothing wrong so I stopped gradually.
Long story short, the only thing that has gotten a little bit better
is my headaches. I am still extremely weak, tired and I can't seem
to regulate my blood sugar or being hydrated enough (at least that's
what it feels like).
I feel terrible as I haven't been able to do anything or go anywhere
with my kids all summer vacation so the guilt is KILLING ME!!! (I;m
sure you've all felt that guilt before).
Sorry such a long introduction but I know everyone here will
understand my complaining.
I look forward to being part of this group so far I'm really impressed with everyone's knowledge of this disease-I guess I should be a little more educated since I'm going to have to live with it for the rest of my life!! redface

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 9/2/2008 6:18 PM (GMT -6)   
Hi Fredsmom,
Welcome to our village!!
You've been through a lot.  Yes, lupus can definitely change and morph as we grow older and have procedures done. Even simple tooth related stuff can cause a whirlwind of changes to occur.
I haven't been the same since the summer of 2007.  I had an anaphylactic allergy to a new seizure medication.  I came within about a half hour of slipping into a coma or dying.... Very serious.  The damage that the fever and rash caused, changed me.  All of me.  I now have high blood pressure, can't control my weight, my blood thinning medication can't be controlled, and my fibromyalgia is much worse than before. 
All from that allergy.  An infection or trauma to the immune system can make your lupus change.  For sure.
I hope that with time, your situation can resolve itself.  I"m hoping for that with mine too.  Just make sure you keep track of your symptoms and stay in close contact with your doctors.  Don't forget about balance!  Make sure you have lots of help around the house.
Talk with you soon,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 9/2/2008 10:15 PM (GMT -6)   
Hi Fredsmom, I don't have kids at home but boy I know others can certainly relate to you feeling guilty. Even though I'm sure you are doing everything you possibly can. Yes Dental work or any type or surgery is a no no with out going thru your rheumy first. Some times these doctors are enough to make ya want to bang your head into a wall!
Well I have a doctor appt in the morning so I got to get to bed. I look forward to getting to know ya.
hang in there and keep coming back!
hugs and welcome Carol
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?  Everytime you come here and share your pain,your hopes, and your support. I love and thank you all!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/3/2008 1:26 AM (GMT -6)   
Hi Mom,

Welcome to the forum. How frightening! I hope the docs finally have things straightened out for you. *phewwwww!* Its so unsettling when the doctors don't agree. I found it really helpful learning all I can about this dd and the typical meds so I understand more of the "doctor speak".

I hope you find some good info here. There are some helpful links at the end of my signature too.

Glad you found us!!


In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/3/2008 9:25 PM (GMT -6)   
Hello fredsmom. I wanted to add my welcome to you. I'm so sorry you ahve been through such rough time for so long now and I'm sorry about the frustrating run around you are getting from the docs. I hate that feeling of being so sick and the docs saying they aren't sure why. Sometimes labs don't always reflect what iis going on. Did you feel better while you were on prednisone? If you did, I wonder if your doc would be willing to put you on a taper dose to try to get you out of your flare.

I know a lot about the mom guilt. I have 2 kids of my own and it's so hard when you don't feel like you have the energy to do the things you want to with them.

I'm glad you joined us - this is a very supportive group and we're here for you through all the ups and downs of this disease.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Jul 2008
Total Posts : 10
   Posted 9/4/2008 10:18 AM (GMT -6)   

Thanks so much for the replies.  I knew people would understand here. 

The prednisone didn't make me feel any better when I was on it but I was only on for three days, 60mg so maybe it wasn't long enough.  I've gotten a little bit better but definitely not back anywhere near where I was.  Now the docs want me to see an endocrinlolgist for possible addisons disease.  I'm told it's common to have secondary to lupus and surprisingly it sounds alot like me.  Right now they're telling me it's fibromyalgia but I disagree-I don't really have much pain except for the headaches which are alot better since I started the Flexiril.

I'm kind of just biding my time and waiting to see the endo which isn't until October.  I just hope I can  make it that long without getting bedridden again.  I just walk around all the time with my heart pounding and feeling like I could faint-it's terrible.  Oh and forget if I get a burst of adrenaline in my body-then I'm really down for the count.

Well, enough of my complaining-thanks for the warm welcomes and I'm sorry i forgot to sign my name on the first post.

Glad I found you guys.


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