Im In My First Bad Flare Up Since Dx

laurid8967

Hi everyone -
Well, it has happened. Im in a bad flareup...the first one since being put on the plaq and prednisone almost two months ago. Im sooo bummed right now.
Yesterday was Jack Bday party (2nd one this week - one for family, one for friends) and, though my husband did most for it, I did do some running around, and some planting of more flowers yesterday. I wore sunscreen, but it was overcast, so I didnt wear a hat. This must be what caused it. I woke up feeling like I should stay in bed, but I got up so my hubby could sleep in a bit. I picked up the house a little - nothing too bad at all. But within an hour or so, I was done. I NEEDED to lay down, and thats what Ive been doing all day. I feel drugged. The bones in my hands really hurt, I feel tight and swollen all over and one side of my jaw is swollen.
Also, Im having a really hard time swollowing - not my throat, but my espphogus feels really small and everything hurts going down. My Sjorgrens is acting up too, and my mouth is SO DRY - there is literally NO saliva in my mouth!!
Im so sorry to complain (I know I shouldnt say that), Im upset and frstrated. I am praying this doesnt last - I dont want to stay on the prednisone, you know? I go on the 28th - Im sure Ill be fine by then.
I still cannot believe how much things are fitting together with regards to the lupus and its triggers. How the sun, lack of protection from the sun - really does get me sick!! I know this sounds silly, but, its like pieces of the puzzle finally coming together...Am I making any sense? Wow...Im really out of it, you guys...
Im asking for prayers that this does NOT last.....going back to bed - will check in later..
Love to all -
Lauri
PS - I know the swallowing thing has something to do with lupus, what is it? Swelling? The doc asked me if I had this and I was like, "How did you know?" lol..It hasnt been too bad though, lately. Also, if I continue to flare, does that mean they will increase my prednisone? I know every doc is different, but in general would they do that? Maybe the plaquenil hasnt really kicked in yet? uughhhh!!!! Sorry
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

lornak · Big Guppy Joined: 29 Oct 2007 Posts: 47 Location: PA

Lauri,

Ihad the same thing with my throat with the last flare. it was terrible Crying or Very sad

I could barely swallow and I could feel everything going down my throat all the way to my stomach. the DR told me that my esophagus was inflamed and increased my pred. it took about 5 or 6 days to go way. hope this helps and hope you feel better soon.

Saysusie · Posted: Mon Jul 14, 2008 8:18 pm Post subject:

Lauri;
In most cases, increasing the Prednisone works best for getting a flare under control. Especially when you are dealing with issues like inflammation in the esophagus. Increasing the Prednisone is usually a temporary thing until the symptoms are under control, then you are tapered back down to your usual maintenance dosage.
Like you, I've taken every precaution while being in the sun (including wearing a hat) and still ended up getting very, very sick (nausea, aching muscles, sore and inflamed joints, horrible headaches, and overall malaise). I think that my sun sensitivity has become heightened! As Oluwa stated, we each have our own tolerance levels and even those levels change within us (much like the disease itself).
I truly hope that you start to feel better soon. We may have to completely change how we deal with our sun sensitivity issues Sad

Peace and Blessings
Saysusie
_________________
Look For The Good and Praise It!

laurid8967 · Posted: Tue Jul 15, 2008 4:36 am Post subject:

THank Saysusie -
Yeah, I did feel a bit better yesterday and today - the fatigue is better, but I havent left the house either! So, I still have flowers staring at me from the driveway "..plant me!!" Oh well, maybe I'll sit on my porch and get them done (I have a big farmers porch on the front of my house). I just dont want them to die!!

Saysusie (or anyone, really) - Of course, I have a detailed question for you, as there is something my hubby and I have noticed. I will put it in a new post. Its kind of involved, so please dont feel pressured to answer right away!! lol...I just know that if anyone knows anything about this, its probably you...If not, thats fine too!
I'll post in symptoms, OK? Thank you - ALWAYS - for your compassion and patience..
Love Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Saysusie · Posted: Tue Jul 15, 2008 9:10 am Post subject:

Lauri;
I did not find your question Sad

You said you were going to post it here, in Lupus Symptoms?? I checked the other forums and I don't think that I saw it there either. Did I miss it somehow?

Peace and Blessings
Saysusie
_________________
Look For The Good and Praise It!

laurid8967 · Posted: Tue Jul 15, 2008 11:16 am Post subject:

SORRY ...lolol
I fell asleep before I could post the next question!! uuugghhh - SOOO TIRED TODAY!!! I woke up to have my ice coffee (hubby brings it home everyday at the same time) and I sat down at the computer with the question half written!!
Sorry for the confusion, and I would love it if you had any ideas - at your convenience, of course...
Love and gratitude -
Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Saysusie · Posted: Wed Jul 16, 2008 11:14 am Post subject:

Found it and posted a response. Let me know if it is confusing to you or if you need more explanations!

Peace and Blessings
Saysusie
_________________
Look For The Good and Praise It!

Wanda · Posted: Thu Aug 07, 2008 9:13 am Post subject:

Lauri,

Hope you're feeling better today. Seems like when I have to stay in under the air conditioner and out of the hot sun, especially if it's a gray sort of day it kind of makes everything look worse than it really is. Sort of like when we wake up in the middle of the night and everything "feels" so dismal. Well, that's when we have to start trying to think on the good things in our lives, things that are lovely and good and pure. The Lord's mercies fall fresh every morning! - Right now, I'm just being thankful that I'm situated in my work in such a way that I am able to take off and just stay in bed when I need to do so.

The feeling I've had about fibro and lupus is that they seem almost like a cumulative exhaustion, both mental, physical and emotional that seems to require a huge amount of rest and rethinking our past inablities to say "no" to peoples' whims and our own perfectionism and "people pleasing". At least, that seems to be part of what is at the root of my illness. I think some of my feelings now have to do with the absolute lack of appreciation for all the efforts I've made at pleasing people who are impossible to please and who can only see my faults. I'm left mostly with a lot of family members in particular (in-laws) hating me and chronically doing nasty passive/aggressive things to me as "punishment" for not bending over backwards quite far enough to suit them.

I'm probably off topic.

Wanda