Welcome new member klstalks

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hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/3/2008 12:07 PM (GMT -7)   
I wanted to start a post for a new member.  klstalks posted in another topic, but I wanted to start a new one so more people would see it.
 
klstalks said...
Hi!
I am new to this forum and I am very glad to read all your posts. I was diagnosed with SLE, APS, Sjogrens and Polymalgia Rheumatica. I have just started my 2nd round of plaquenil but it has not started to alleviate my symptons yet.

I am concerned about how long I can work after reading the posts and identifying myself within them! My fatigue is interferring with my ability to function. Does anyone else suffer brain fog--unable to think or even converse with anyone--when the fatigue and pain become overwhelming? I use to think that I was just being lazy or too sensitive to pain prior to being diagnosed.
Welcome to our forum.  I'm sure you can tell be reading the forum, that we have a great group of people here and that we are very suportive of each other.  I'm sorry that you aren't getting much relief yet.  How long have you been on your second round of plaquenil?  It can take a while for it to build up to a therapuetic level in your body.  I hope your doc can figure out something to help to decrease your symptoms.  Has your doc ever talked to you about trying prednisone?
 
I'm glad you joined us and I look forward to hearing more from you.
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/3/2008 1:10 PM (GMT -7)   
Hi klstalks,
 
Welcome to the forum. You have found a great place for support and learning.
 
We all suffer from the brain fog.  For some of us it's most of the time, and for others, it's only part of the big story, that comes and goes with flare ups of the disease.  It's definitely NOT being lazy!  It's an actual medical issue that is quite debilitating as you are experiencing yourself.
 
With my own experience with lupus and all its "friends", I've had to completely change my lifestyle and work.  I went into self employment in order to manage my own schedule and work as much or as little as I can handle.  I don't have anyone to answer to except myself!  It's been a true blessing.  I'm a photographer. 
 
So figuring out ways to make life easier for you is crucial.  Limiting stress (easier said than done), and maintaining a really good raport with your doctors is a good start.
 
I'm not familiar with plaquenil, but I do know it takes some time to really kick in.  I like Hippi's suggestion of talking to your rheumatologist about a supplimental treatment like prednisone.  It's a "kick it in the pants", "kill the inflammation" kind of medication!!
 
Looking forward to talking with you more,
 
Ginny
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 2/3/2008 1:45 PM (GMT -7)   
klstalks said...
My fatigue is interfering with my ability to function. Does anyone else suffer brain fog--unable to think or even converse with anyone--when the fatigue and pain become overwhelming? I use to think that I was just being lazy or too sensitive to pain prior to being diagnosed.


That is exactly how I felt before I was actually taken seriously and started treatment. I thought somehow I had become lazy or depressed and couldn't make myself work. Only later did I come to terms with the fact that I really was doing the best I could... as much as I hated to admit it, I do have an illness that sometimes interferes with life!

In my case, even having my own schedule didn't help. The pressure & stress of constantly having clients that need things didn't go away -- I had to actually formally close up business to be able to fully relax and treat my symptoms and my illness.

But my story is not everyones'. Many people are able to find effective symptom relief that allows them to maintain pre-lupus lives, for the most part. Usually it seems to be a combination of med's and stress control/relief, along with good restorative sleep, that helps us keep above water.

It would definitely be a good idea to let your doctor know as soon as possible that you are not feeling any relief, and ask if it might be possible to be treated a little more aggressively until things get under control.

Welcome to our little corner of the web,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


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