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May be Lupus, may be not

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Old 07-04-2010, 02:42 PM   #1
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serand4 HB User
May be Lupus, may be not

I've been in sever pain for four years. I'm talking "do I want to live today or do I want to die" kind of pain. I have a beautiful, special needs son that has kept me alive and will always be my first consideration but the pain was so overwhelming and all-consuming that it was hard to stay focused. I was laid off in 2008 in a mass company lay off and God bless my bosses, they did all they could to save me. But I was just so sick I actually asked to be fired. Please, please let me go home and rest, curl in a ball and overmedicate myself. I had no energy, no clear thoughts. By some miracle I found a decent doctor (rheum) who diagnosed me with fibro and put me on a set meds. I stuck to the program but the pain was vicious. My ankles and feet hurt so much I would've happily amputated them if given the choice. My hips screamed when I walked. One day when I was out with my son I actually wanted to steal an old lady's walker -- I just couldn't go any further without help.

Fast forward two years. I cut my pain meds, the big ones anyway and actually felt a little better. I could move more and I could think again, not like I once did but better. But not only did I have pain, my guts were shot. Food and I stopped being friends long ago. Without Prilosec, everything had to come back up. I went for periods where I couldn't swallow. No fruit, no vegetables and next to no protein. I could eat cupcakes, sweets - refined carbs that required no processing. I could literally feel my food going through my intestines. My lymph nodes were always swollen and twice I was checked for breast cancer. I finally went to Cleveland Clinic who labeled me with systemic fibromyalgia. The pain remained but I decided it was time to go back to work and figure out how to live.

Now it's May 2010. I get my first temp job in years. It's a great job, good climate, nice people. However, I suddenly have a slight period two days into my job. I've been in menopause for three years. (Started with the fibro) Five days later I notice I arrive home with a firey, swollen rash across my face. The rash happens every night. My nightly fatigue is so extreme that my son knows not to ask for anything. I try to grab him burgers on the way home but am often too tired even for that. I sleep through every Saturday - I can't help it. Finally it hits me - is this the butterfly rash? I've been tested for Lupus before but there were no real signs. I call my doctor, my wonderful truly involved doctor and she gets me right in. I arrive, rash in full bloom from my face to a shawl around my shoulders and chest. My body is on fire. I actually see the concern and what looks like panic on her face. I've read enough threads here, we don't panic anymore. We live scarey everyday. Let the professionals handle the fear. Anyway, she takes blood, and gives me a script for prednisone. I've had rashes since all of this started. In fact, everything started four years ago with rashes up my arms and my eyes swollen shut. What I didn't process until later was that the prednisone was a forever thing.

But guys, I feel good for the first time in four years. I'm not talking a little better. I'm talking, I want to jog and cook and write that novel about pain and living hour to hour. I have energy!! It's a crazy energy that keeps me up until 3:00am but I don't hurt at all like I did. It's a very dull throb instead of this constant screeching knife tearing across my joints and muscles. I'm a fitness nut - or was. I'm back on the treadmill and doing upper body weights. As you can tell, I'm writing. Yes, it's a manic energy but for the love of God, it's energy. My kid gets real meals now. Tonight we're seeing fireworks for the first time in four years.

I know prednisone is scary. I've read about the side effects and I can hear the fear in your voices as you talk about it being a life sentence. I don't know. I guess I'd rather be moon faced, bloated, thin skinned and all the other things associated with it than suicidal and dealing with an agony only super strong pain drugs can dull. I'm still waiting to hear if I have Lupus. But now I can live. I can eat - really eat! I can make conversation that makes sense. My eyes improved. My family and friends have clearly noticed the difference. I laugh and get loud and silly. While everyone wants off, I'm not sure I could face that option.

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Old 07-05-2010, 04:08 AM   #2
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Re: May be Lupus, may be not

Serand4, hi & welcome! At menopause, I also got new problems, with old ones worsening, and I learned later that lupus just LOVES hormonal shifts.

In lupus and close cousins (RA, MCTD, etc.), I don't think steroids necessarily have to be "forever". They're sometimes prescribed as a "challenge test", also to make life bearable for the patient. Have you read the sticky posts (permanent info posts) at the top of the thread list? One contains resources you could borrow from your library. These books discuss meds used in lupus, which vary depending on disease severity. I'm eligible for Plaquenil, an antimalarial, the drug of choice for people WITHOUT organ-threatening disease. i.e., it's a boon for many people, because it's steroid-sparing.

In lupus, UV from sun can trigger overall systemic flares, not merely rashes. Did the dr. warn you about this? Anyway, I'm glad you got some much-needed relief and hope that your doctor can come up with a Dx quickly, and a plan of care. Post more when you can, OK? With best wishes to you, Vee

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