It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 04-15-2008, 06:48 PM   #1
Newbie
(female)
 
Join Date: Apr 2008
Location: Boiling Springs, SC US of America
Posts: 2
Carole12141960 HB User
Thumbs down New to the lupus diagnosis...Help! The symptoms seem so varied!

I've been seeing a Rheumatologist since last summer and recently had a "lupus" diagnosis with a positive ANA as well as by evaluating other ongoing symptoms:

joint pain
malar rash and other body rashes biopsied (positive)
pleurisy
ongoing temp of 100+
easy bruising
hair loss (hair stylist noticed it before I did)
incredible fatigue
photosensitive
mouth ulcers
insomnia

This week; however, adds a new one... I've been dealing with tremendous pain in my hands and feet in addition to the major joints of hip, knees and lower back (bone density screening shows an abnormal bone density of -4 in the spine only). My hands "don't work right" is the only way to describe it. I have a hard time picking things up, and my feet tingle. The day before yesterday my ring finger turned bluish purple like it was bruised; the next day it was gone. Just a person shaking my hand in greeting brings me to my knees! This is something I've not experienced before, so I've made an appointment for tomorrow. Thing is, I'm hoping to receive some experience/suggestions for dealing with the pain...

The doctor has increased my Plaquenil dosage; and has changed me from Meloxicam to another anti-inflammatory. But at this point is feels like nothing seems to be helping! Am I correct in assuming that this is a "flare" as it had seemed somewhat managed up until this past month.

I have four children: ages 2, 20, 24, and 27. That's not a typo, and I get frustrated not being able to pick up my little daughter.

Sorry this is so long, but thank you, and I'm grateful to have found this forum and vast experience!

Carole

 
Sponsors Lightbulb
   
Old 04-16-2008, 09:07 AM   #2
Senior Member
(female)
 
Join Date: Mar 2004
Location: Houston
Posts: 245
Donte HB User
Re: New to the lupus diagnosis...Help! The symptoms seem so varied!

Hi Carole,

I just wanted to say I'm so sorry you are feeling so terrible. I can relate to your pain. I have a hard time picking things up as well (namely my two year old daughter). You may be in a flare right now. Try to hang in there until it passes. Good thing your doc raised your plaquenil dose; hopefully that will work soon. What about Prednisone? Do you take that at all for a short period of time? It helps me usually. I'll take it for about 5 days and then I'm good.

I think it's funny that you wrote "that's not a typo" - I too have started all over again with the babies! I have a 2, 16, 20 and 21 year old(s). I don't know how we do it. It's not easy having this disease and having a young child.

Hang in there

 
Old 04-18-2008, 08:58 PM   #3
Senior Veteran
(female)
 
Join Date: May 2003
Location: Virginia, USA
Posts: 2,354
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: New to the lupus diagnosis...Help! The symptoms seem so varied!

Hi -

Any chance you're taking Celebrex? Your worsening symptoms - especially the pain in your feet, knees, and hips sounds like my reaction to Celebrex. I didn't know I had lupus at the time, but had foot pain so the doctor put me on Celebrex. I took it for two weeks during which I started having such pain and swelling in my lower joints that I could stand for only about 20 minutes at a time before I had to sit and elevate my legs. I missed 3 weeks of work, too.

The 3rd doctor I saw did an ANA which was + and a sed rate which was double normal. He sent me to a rheumie. The rheumie deduced that my bizarre symptoms were an allergic reaction to Celebrex, took me off Celebrex, and put me on Naprosyn. The joint swelling and pain were gone in 3 days. I'd never been allergic to anything before, but the rheumie told me many people with lupus become allergic to sulfa - and Celebrex has a sulfonamide in its chemical make-up.

Long story short, if you're on Celebrex, that could be the culprit.

In case you haven't heard this, the sunshine will probably make your lupus symptoms worse. Try staying out of the sun from 10am to 4pm, wear 45+ SPF sunscreen, long sleeves, slacks, and a wide brim hat and see if you don't feel better. Your lupus rash may also fade away. Works for me!

Wishing you well - Barbara
__________________
Betty

 
Old 04-20-2008, 05:11 PM   #4
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 5,067
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: New to the lupus diagnosis...Help! The symptoms seem so varied!

Carole, Welcome. I'm sorry about your Dx but glad you found us here. I'm not sure how recently you started Plaquenil. It takes about 3-4 months to reach full effect (so the hardcovers say). Maybe you're still in that time frame?

Also, spring & summer are often rough seasons for those with lupus.

I get the foot thing, too, where it feels as though you're standing on knife blades. For me, it definitely correlates with overdoing it & being on my feet too long, when I'm already tired. (I should know better, but clearly don't.) Other than trying to cut back a bit---very hard with your precious two-year old daughter!---you could make sure to wear your most supportive & cushioned shoes. At the first sign of trouble, I don my "house tenners"---ugly but kind to the feet.

I wish I had more to suggest. I hope you regain some energy soon. Hang in there! Best wishes, from Vee

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Recently diagnosed with lupus and needs answers! tiesha Lupus 3 11-25-2009 07:32 AM
Probable Lupus Diagnosis plus nervous system involvement? Lizardwoman85 Lupus 13 11-19-2009 05:36 AM
What was it that made you suspect Lupus & how did you get DX'ed? BriansMom444 Lupus 13 11-11-2008 08:16 PM
New to Lupus...frightened! Test results help.... shirlg Lupus 10 03-04-2008 01:51 PM
Confused about Lupus test. Can someone help? MissBecky82 Lupus 8 08-23-2007 05:31 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:36 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!