feeling poorly again :-(

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jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 10/1/2007 2:24 PM (GMT -7)   
Well the last couple of months I have been feeling pretty good actually beginning to to feel normal again until last week (the day after my b-day to be exact)! Then all the sudden BAM it hits me like a ton of bricks. I feel terrible, I work all day come home and feel like I could crash for the rest of the night, my joints hurt so bad, my bowels are very sensitive, I am not sleeping well at night, my lower back killing me... I just feel terrible... like I've been hit by a mack truck. Sorry for the whine eyes but I knew you guys would understand. I go to the rheumy on Friday maybe she will have some suggestions for me.

Thanks for listening, I hope everyone is feeling better than me, hugs and love to all.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 10/1/2007 4:49 PM (GMT -7)   
HI.  Sorry to hear you have been hit by a "mack truck" too.  When I'm in pain, I usually tell people that I feel like Nancy Karigan when Tanya Harding blasted her knees with a metal pipe.  That's what I feel like (sometimes its much worse).  It's hard to deal with this when people around you don't understand or realize what a struggle it can be on a daily basis.  I understand your pain.  It's so different when you have a few days that you just feel great.  I live for those days.  I hope that your doctor appt goes well and you can find something to get you over this for now.  Hang in there!
~Firebabe~
 
"Challenges make you discover things about yourself you never really knew."
 
SLE and Class II Lupus Nephritis


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 10/1/2007 7:35 PM (GMT -7)   
sad ((((Stacie)))) I'm sorry you're feeling so bad. What an awful way to start the new year. How old were you on your birthday? I've said this many times before, but I just don't know how those of you who work full time handle feeling this bad all the time. I just don't know how lucky I am to be able to stay at home and even then I feel sorry for myself sometimes. You have both my sympathy and my admiration that you're able to get up every day and go to work. I'm sure you feel like crashing when you get home and I wonder where you get the energy to do anything else.

I hope this is just a short lived flare and that you're back to your old self real soon. Don't let it go on too long without calling your rheumy. Hang in there! And Happy Birthday a week late.

Love,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 10/1/2007 8:16 PM (GMT -7)   
Stacie, I'm so sorry that you are feeling bad again. I know that things were looking up for you and now this setback. I am glad to hear that you don't have to wait too long for you appt. and hopefully he can help you knock this flare out soon. Take care of yourself and get plenty of rest. Thinking of you.

"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, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2007 8:19 PM (GMT -7)   
OH Stacie . . . No . . . you were making such good progress. Darned! Glad you have a doctor visit coming up . . . can you take extra prednisone?? Can you call and get permission to do that? You sound like you are going into a flare.

Thanks for the update and I'm sending you some tea as well.

Many here are really flaring . . . I wonder if it is the dampness or the temp change.

Prayers and 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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 10/1/2007 8:58 PM (GMT -7)   
Hey Stacie,
 
So sorry you're not doing well, especially when you've been so good for so long.  I can relate.... I'm right there with ya.  It's good that you're being proactive and seeing your rheumy.  Hopefully a small adjustment in your meds will help you to get out of this flare quickly!
 
Lots of love
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

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 10/2/2007 12:14 PM (GMT -7)   
Sacie, I'm so sorry you have crashed. It's so hard both emotionally and physically to crash after you have been feeling so good and you get a taste of a life that starts to feel a little bit normal. I'm hoping your rheumy can help you get things under control.

Hang in there and take good care of yourself. ((((Hugs))))
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 10/3/2007 9:49 PM (GMT -7)   
Hi Staccie, I'm sorry I didn't respond until now I am just getting caught up. It really hits ya hard emotionally as well as physically. You actually start feeling like you are "normal" again and wham like you said knocked ya off your feet. The good thing is you have a doctors appt this Friday and they hopfully can shed some light on this. You must be doing somthing right to have gone for some time now without a flare. So maybe you will be able to fight this one off quickly. I sure pray ya do.
Try to rest when you can and let us know how your rheumy appt turns out.
love ya
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/5/2007 7:59 AM (GMT -7)   
Hi Stacie . . . I hope the rheumy is able to help you today. Post when you feel up to it and let us know how things went and how you are feeling.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/5/2007 4:58 PM (GMT -7)   
Thanks guys :-) I appreciate all of you more than you will ever know.

Well I went to the rheumy today. It looks like my flare actually was starting about a month before I felt it. When I had my labs done 8/31 my WBC was 3.1 she said this told her that my lupus was "stirring around". She wants me to up my Imuran to 3 tabs a day to see if that helps the joint pain, she said to give it 2 months, after that if I don't see an improvement I can up it to 4 tabs until I see her in Feb. If this doesn't work she will try taking me off Plaq and replacing it with Methotrexate. I came home from the doctor and crashed and not planning on doing much this weekend maybe I can get out of this flare soon!

p.s. Pat, I was 36 on my b-day!!

Thank you all for your prayers and well wishes!!! Hugs and love to all
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/5/2007 6:07 PM (GMT -7)   
HI Stacie,
 
Thanks for the update on what is going on.  Wow, that's a big jump in your Imuran.  Don't be surprised if your GGT comes back elevated.  Imuran will do that to your liver test results.  I hope this works for you.  It's a great medication.
 
Question about your lower back pain.... Is it in the area of your sacro-illiac joint?  Just above your butt crack (sorry), and sort of spreads out from there?  I have inflammation in that joint.  It's called sacroiliitis.  I use a topical cortisone cream that is 10%.  You need a prescription, but man does it ever work!  I have the inflammation bad sometimes and within a couple of days it's gone.  Just thought you might like to know!
 
Take good care Stacie.
 
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

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/5/2007 6:50 PM (GMT -7)   
FEBRUARY ?????? Really???? Oh Stacie that is SO far away when you are having so much trouble. Does he do labs in between??

I hope your increased meds help. I took plaq with MTX, but I wasn't taking Imuran. Hmmm . . . maybe the three can't co-exist together.

Thanks for the update and I hope you'll see good improvement BEFORE 2 months. That is such a long time to wait for relief. Good sleep to you sis!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/6/2007 11:06 AM (GMT -7)   
Ginny, my lower back pain is around where you are talking about, around the base of my spine, she said it's caused from the lupus, she said its the same thing that affects my hands and feet. I also have hip pain which the doctor thinks is bursitis. She pressed on the right side of my lower back and I thought I would jump off the chair, the left side wasn't as sensitive, in fact all of my joints (knees, hips, feet, etc) on my right side hurt worse than my left?!?!?!!? Maybe I should try some of that cream, I've been taking Lortab and that gets rid of the pain but it comes back. I will ask the doctor about it if the increase in Imuran doesn't help.

Carol, I will have my labs checked in a couple of weeks to see how I am handling 3 Imuran tabs, I just hope it helps. Me and the doctor will communicate over email or by phone to see how the pain is.

Thanks guys

:-)
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2007 12:28 PM (GMT -7)   
Stacie!!! I want a doctor that communicates to see how the pain is!!! That's great that your doc is so on top of things.

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 10/7/2007 11:50 AM (GMT -7)   

(((Stacie))),

   I'm sorry that "Mack Truck" got you!! Those things will knock you for a loop..... Ole Mack is chasing me right now, but I'm trying to out run him.... :-)

  Bless your heart! You were doing so good for awhile. I sure hope the increase in meds helps quickly. Hang in there and update us when you can. You are in my thoughts and prayers.

                                                          Love, Babs


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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/7/2007 3:36 PM (GMT -7)   
Hi Stacie--
I'm going through the same thing, though I'm finally starting to get better. With me it preceded some very heavy rain, so I guess I'm a weather predictor now! Anyway, I actually got my sacroileitis cured for almost thirteen years from a sincle cortisone shot into the joint. I thought it would hurt, but it didn't and it fixed me up really good for a long time. I've tried to get another shot in the joint recently, but no one will do them, just shots in the bum, which don't do the same thing as getting it right in the joint, probably have to see someone special I guess for that, maybe a sports medicine doc, anyway the shot is awesome. I didn't realize how much it affected my sleep as well. My horses used to get shots in the hocks, and glucosamine, chondroitin and MSM and they do definitely work in horses. I hope you feel better soon. I'll have to check into Ginny's ointment. Ginny, if you read this can you give us the name of the ointment?
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/7/2007 5:10 PM (GMT -7)   
Hi Stacie:

I'm sorry to hear that you've got such a flare going on. You were doing so good (((hugs))). I hope the increase in Imuran helps you and you get the much deserved relief. Hang in there and try not to get to discouraged. I know this is tough and when you begin to feel so much better, it's a real let down to feel so poorly again.

Just wanted you to know that you're in my thoughts and prayers. I hope you feel better soon.

Love,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 10/8/2007 2:55 PM (GMT -7)   
Hi Stacy... I think about you all the time. Our symptoms are so similar and I have wondered how you were. I am so sorry to hear that you are flaring again. I will definitely pray that this is over quickly andyou go back to feeling better very quickly!!

Blessings,

V.
 
Victoria
 
Mother of four, full time Systems Analyst
 
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
 
Meds:  Medrol injections; Darvocet as needed, Methotrexate, Benadryl, Zyrtec


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/8/2007 5:44 PM (GMT -7)   
Carol, I have been blessed with a great rheumy, she is wonderful!

Babs, I hope you outrun that ole mack truck, we can't let him get us!!! nono

Marji, my doctor asked me if the pain was bad enough for a shot into the joint, I said YEAH but I don't want the shot nono but if I have more pain like that I may have to reconsider it. I've had the shot in the bum and it did nothing for my pain.

Barbara, thank you for your prayers, I know you've got a lot going on too, hang in there and you are also in my prayers.

Victoria, thank you for your prayers! I think of you too as I know we both have our fair share of GI issues! How have you been doing?

Thank you all for your kind words and prayers, it really means a lot!!! hugs and love to all
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 10/9/2007 7:54 PM (GMT -7)   
Stacie,
   Just wanted to let you know I'm thinking about you and hope you feel a bit better soon...(((Hugs))). Your in my thoughts and prayers.
                                                 Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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