Question about length of flares

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mamamuse
Regular Member


Date Joined Dec 2006
Total Posts : 102
   Posted 6/21/2007 11:29 PM (GMT -6)   
I'm just curious about something...how long are your flares?
 
I refer to flares as the days that I feel really bad. I had one today. My life has been overrun with stress lately, both physical and mental (and the mental stress is both good and bad). Yesterday I was on the go all day and into the evening, and today, I just couldn't get up. I did go to the bathroom and ate something, but for the most part, I was in bed until 5pm today.
 
I could tell it was coming. I started getting mouth sores, and was achy and tired yesterday, but I kept pressing myself because there was just so much to do. I feel a little better tonight, but if I follow my usual pattern, it'll be another day or two before I feel considerably better.
 
Still, what I define as "better" now isn't anywhere near the normal I experienced before lupus. So, I'm confused as to how to define a flare. Is it that I've been in a flare since I first got sick, because I just no longer can do all the things I used to? Or is the "flare" the bad days that happen every week or two?
 
I don't know if that makes sense or not. I guess I've just noticed some people comment that they've been in a flare for years, and I wonder if that means that for X# of years they have felt terrible every single day? Like, can't get out of bed terrible, every day, for years?
 
Is it wrong for me to refer to only the bad days as a flare?
Kari
Wife, writer, artist, mom to 2 wonderful boys
Lupus, arthritis, PCOS, mild depression
Now taking: plaquenil, limbrel, metformin XR, Zoloft, and the occasional percoset


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/22/2007 6:59 AM (GMT -6)   
Hi Kari, someone told me once that for them it's like the feeling you get when you have the flu worse than you ever had it in your life. The last time I had that happen to that extent was about 10 months ago. It last for about 3 months though. It was before I was DX'd and I didn't know what was happening. I had just moved here so I'm guessing the sell of my home moving to a new state. all the hassle of that was what sent me spiraling. Anyway I started running a fever that I could only semi keep under control with tylenol. It stayed at about 103/104. I could barely walk. I cried all the time. My legs swelled so much and so fast that my feet actually bled on top from streching. I cried in my sleep. I still had to function because the move was going on weather I was sick or not. I kept going to hospitals and urgent care looking for answers. That's when every doctor I went to started talking about lupus. and taking tests for it. It wasn't until things started to settle down and I got a doctor that gave me meds to control the pain and the swelling and put me on plaq. that the flare starting coming under control. It was a very slow process. I say 3 months but that was the worst part. It took many months after that to feel like I was what I could say feeling pretty ok. Now my days are either,feel ok, feel bad, or feel really bad. but even my really bad days I wouldn't say are flares in comparison to what I had gone through for all those months.

I hope you get to feeling better. and have some pain free days ahead I imagine everyone is different. I,m just sharing my experience.
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2430
   Posted 6/22/2007 7:48 AM (GMT -6)   
I consider my "flares" as having the flu w/out the fever. I feel head heavy, sore and just plain yuck-a-rooo! I almost feel out of my body.
Mine last between 3-5 days. Once (many yrs ago) it last about 10 days.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/22/2007 8:15 AM (GMT -6)   
Kari, I was just talking to someone about this just yesterday. There is a lady that works in my building who has fibro and chronic pain and CFS and we were having a rant about people who pass you by and say "How are you doing?" and our answer would be "To whose standards?" lol Obviously we would not say that but we had a nice time getting it out.

Yes, a good day for me would be a sick day for someone else. I have a hard time distinguishing a flare too because you never feel 100% before-you-got-sick good (at least I have never felt good since this all started three years ago). But I think for me a flare is when its an effort to walk around the house, or sit or stand for a long time, or my whole body aches kind of like what the others said about the flu. I usually have a fever during these times too but its usually just low grade when I feel like it should be 104. I can go one day during one and I have gone as long as 2 weeks.
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/22/2007 9:08 AM (GMT -6)   
This is a great subject. Like everyone else, I struggle to figure out what constitutes a flare. For me it's when my symptoms all get worse and I can't really function. I usually get a fever, mouth sores, hair loss, increased joint pain and fatigue and rashes. I've had my flares last anywhere from a few days to about 6 months. My worst and lengthiest flares happened before I started taking prednisone. Now when flares hit me, an increase in prednisone can usually give me some relief. I'm starting to learn to differentiate between "bad days" and flares. Bad days usually get better by the next day if I make sure I rest a lot, but flares usually last several days in a row despite resting. Sometimes I can feel a flare coming on and other times a flare will hit with no warning.

It is interesting how we have to re-define what a good day is. I think that when I tell healthy people that I'm having a good day, they think I am symptom free and feel just like they do. I recently told a friend that my good days would send a healthy person to the doctor looking for answers as to why they felt so bad. FOr me, good days still have pain and fatigue, and I still need to rest, but I can do a few things without feeling like I have to go straight to bed.
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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