What should I be expecting

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Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 9/5/2007 8:27 PM (GMT -6)   
Since I'm new to this, I really don't know what to expect.  A few years ago before I was diagnosed with SLE I had a flare and my rhuemy put me on prednisone.  I was only on that for about a week, and it took the flare away for over a year.  I was lucky.  I've been on 2 different NSAIDS in the last few months, with each working only a short while before I feel lots of pain again.  I know that pain is a huge part of this whole thing, but my question is do other people experience pain in random body parts?  One day I can wake up and my right hand/wrist and second toe on my left foot hurt so bad, and maybe one of my knees. The next day my right arm could be in serious pain and my shoulders. Is this (haha) "normal"? Or should I be calling my rhuemy?  We have discussed being put on a better med, but my hubby and I want to have kids, so my Dr. won't give me the better stuff.  I feel like I'm always callings my rhuemy.

Regular Member

Date Joined Dec 2006
Total Posts : 185
   Posted 9/5/2007 11:13 PM (GMT -6)   
i would call your rheumy you may be headed for a flare up and before it gets tobad maybe some meds will help.. while your flaring anyways its better to not try for a baby.. your rheumy is there to help you so i would call away.. hope you feel better soon
DX: Lupus (dx:'03) ,Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage II Lupus Nephritis. Stroke('06)Seizures('06)Photosensitivity since childhood, vasculitis, gangrene left thumb waiting for autoamputation
Meds: Diovan,Lisinopril,Hydrochlorithiazide,Clonidine,Keppra, Plaquenil,Prednisone 60 Mg/Day,Miracle mouthwash,Xanax, Darvocet,Lidocaine cream, Xopenex inhaler, Xopenex Nebulizer 

Regular Member

Date Joined Oct 2006
Total Posts : 193
   Posted 9/6/2007 6:26 AM (GMT -6)   
I think everybody has different symptoms from what I can tell. I wake up with pain in a couple of finger joints and my wrist and it will last a few days. Then I might wake up with pain somewhere else - my feet - for a few days. I don't know what to expect. I have consistent pain in my neck but I don't know whether the lupus has anything to do with this at all.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/6/2007 10:08 AM (GMT -6)   
Hi firebabe,

Make sure to keep a notebook or a computer document where you note your symptoms between doctor appointments. Some of these issues come and go and some of them stick around . . . but they are ALL important to the doctor at your next visit. I had no idea that my limbs falling asleep was weird or that the bottoms of my feet hurt like *ell wasn't just from my weight. After reading lots on the internet, I realized that these were NOT normal and that each symptoms was a clue for the doctor.

I don't call in with tolerable aches and pains because I am already on meds and I can take extra NSAID for more painful days . . . but when the NSAID's don't manage the pain, and this goes on for a few days, its time to see the doc again. I'm guessing that you have a "next appointment" already scheduled. Make sure that when you go back, you include in your symptoms all the symptoms that are still issues from your last few appointments. If you don't mention it EACH visit, the docs think it is gone. I always write out my symptoms, because it is so easy to forget things.

Hang in there . . . . by the way, when is your next appointment?

In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
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Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 9/6/2007 3:03 PM (GMT -6)   
Hi, Firebabe. I'm with Rosie. Since lupus can cause the craziest stuff all over your body and even change it's mind very frequently, I keep a journal of exactly what I experience and when. If it's causing something that seems somewhat tolerable and can wait until my next appt., then I make notes and wait. If it's causing something I can't deal with, I call. about a week before an up-coming appt., I take out my journal and make me about a page of notes to go over with my doc as to what's been happening as well as any new ?'s I have. Don't be afraid to call if you need too though. This disease is very complicated and it takes a while for you to get a handle on it...however temporary that might be!!! Take care.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 9/6/2007 7:52 PM (GMT -6)   

Hi Firebabe,

   I agree with keeping a journal of symptoms. We never know what to expect from minute to minute with this disease. I hope your doctor gets you on the right mix of meds soon and you start feeling better.

   Welcome to the forum. This is a great group of people! Please keep us updated and take care. Hang in there! You will be in my thoughts and prayers.


 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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