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HAPI2B
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/15/2008 5:14 AM (GMT -7)   
   Hi, I'm new to this forum. While diagnosed with lupus, I don't have many problems. I take prednisone and plaquinil on a maintenance level. I've been ill this week and when I visited the doctor (new because I am out of town) he said, "for being so sick, your tests are pretty clear." 
 
I've had flu symptioms.  My main question is, when I think I'm having a flare the top of my head gets really sore.  I don't see this discussed much but years ago I recall one other person mentioned this as a symptom of a lupus flare.
 
To help me in the future, are there consistent symptoms than can confirm a flare?
 
This week I've had fluctuating fever, stuffy nose, fatigue, headache, unsettled stomach, headache - constant, general body soreness. And - the sore scalp!
 
I also just completed the medicine Macrobid for a urinary tract infection.  Could my symptoms be a reaction to that?
 
Thanks to anyone you can answer or give me direction!
 
HAPI2B

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 7:25 AM (GMT -7)   
Welcome to the forum Hap !!

Each of us does eventually become familiar with the symptoms of flare onset. But they can be different for each one. The flue symptoms are a really common indicator. I actually get shooting pains behind my jaw up into my ear, my eyes get really dry and my limbs go numb when I sleep. There are lots of other little signals for me too.

Your tests might be clear because of the pred. It won't mask most blood work, but it may mask some of them. You are dealing with the "new rheumy syndrome". I've seen it over and over on the forum, each new rheumy wants to start over with the dx process. If you have past medical records, be sure to share those with him. I would personally get the records from the last rheumy, as it seems difficult to get them to send info to the new docs. If the old rheumy doesn't provide the info after a reasonable amount of time, we've been know to camp-out at the old rheumy's office until they hand over the copies we need of our lab work.

I hope some of the others will have some more help for you.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/15/2008 9:15 AM (GMT -7)   

Hi Hap - Welcome to the forum!  I've been trying to figure out those flare markers myself.  As Rosie said - the fluish/malaise kind of feeling seems fairly common.  I have fibro as well, so I used to always assume it was the fibro....but then things started to change.  The symptoms you described all are familiar to me, except maybe the stuffy nose.  Recently I've had some nasty ear pain (interior and exterior) with a sore throat on that same side and some tenderness under the jaw on that side, and extreme tenderness on my scalp (same side) with the last time this happened.  The ear pain has happened several times in 3-4  mos. and the scalp pain only came on with the last time.  Lasts about 3 days and then it's gone.  No cold or sinus thing develops to attribute it to - so I've decided it may well be part of a flare.

I had an appt w/ my massage therapist this last time when my scalp was so tender.  She said the muscle bundle that wraps from the ear/jaw area and back around the skull/scalp was extremely tight.  She showed me those muscles on her anatomical poster and it lined right up with where it was hurting.  It felt much better after she worked on stretching those out (not so much while she was in the process!).  It's been a couple weeks and it's been fine.  I'm sorry this doesn't answer your question better - I do still think it could be flare related - because that connective tissue is everywhere - but it may be like a constricted muscle thing as well.  I didn't have fever assoc. with mine - and I tend to think the fluctuating fever is a sure sign of flare - even if it's a mild one.

I also I decided I needed to make sure I didn't sit with a draft on my head - whether riding in the car with the window open or anywhere air from an A/C vent was landing directly on my head.  And I also wondered if it might be related to sun exposure - since I haven't experienced this in the winter (yet).  I didn't think of it in time to look for rash on my scalp .... but it makes me wonder. 

Lucy

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


drobertson
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/19/2008 4:13 PM (GMT -7)   
I was also  recently diagnosed with lupus.  I am on Lyrica and Plaquenil.  I have scalp pain.  I feels like I have had my hair tied back for a week. very sore.  A little hair loss but no alopecia.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/19/2008 5:26 PM (GMT -7)   
Welcome to the forum 'drobertson' !!

I hope you'll start a new topic and introduce yourself!! We'd love to hear more about you and how you were diagnosed and how Lupus affects your life . . . along with any questions. Also, I'd love to hear how the Lyrica is helping (what symptoms is it helping and how much does it help?)

YES! I've had the same thing with my scalp. I tend to have that when I have a fever. Is your temp normal? or a bit high?

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/19/2008 8:06 PM (GMT -7)   
Hi HAP12B,
 
Your symptoms sound a lot like fibromyalgia. Just like Lucy was talking about.  When I'm in pain and having the symptoms you mentioned, I always get my blood tested to see which disorder is flaring.  My lupus or my Fibromyalgia.  If the blood tests come back fine, then I know it is my Fibro. 
 
Irritable bladder is common in Fibromyalgia.  The symptoms will feel like a bladder or urinary tract infection. Did your urine come back positive for bacteria?  Or were you prescribed Macrobid because you just had symptoms or pain?
 
Stuffy noses that produce "yuck", are one of the most common symptoms of Fibromyalgia. So is skin pain!  Sometimes my skin gets so sore that I can hardly manage wearing clothing!
 
I would take your symptom list to your rheumatologist and ask about Fibromyalgia.  There are no blood tests for it, only symptoms and physical tests to get a diagnosis.  Fibro often comes along with a lupus diagnosis, or shortly after.
 
Let us know how you make out okay,
 
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

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 11:45 AM (GMT -7)   
Wow, you just described me this past week. I have a sore scalp too and my hair is thinning. I noticed the scalp thing this year sometime and it comes and goes. I will have to see if its worse when I feel worse joint pain wise.
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