still sick!!!!

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jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/15/2009 6:05 PM (GMT -7)   
Ok, I have been out of work all week, well actually since last Thursday with the exception of 1/2 day on Monday! I have been so sick, the sickest I've been in a LONG time! You all know that I've been having problems with the "floating / unsteady feeling" when I walk, that's been going on for over a month. Well nausea.... severe nausea set in last Thursday morning and has not let up one little bit! cry I have barely been able to eat and become very weak, it's been dreadful. I finally had my MRI done today with a bonus phenergen shot turn which has made me actually think about food again! I am hoping it lasts..... but if not rheumy has instructed me to start on pred, starting out 20mg a day and decreasing 2.5 mg every 3 days. She doesn't know if I've had a virus or a lupus flare, which she suspected I was in when I saw her on Friday. I never thought a flare could make you feel like this shakehead shocked . The last bad flare I had was back in Feb when I had the constant headache for over a month, a headache that OTC or Rx meds couldn't touch, ended up out of work for a week and on Pred for 10 days and that's the only thing that helped!

At this point I am wondering what this means for me, will I be able to continue to work? If so, is this what I have to look forward to, a flare every 6 months, getting worse each time? I just don't know if I can do this.

Anyway, just wanted to let you guys know what was going on and I will give an updated on the MRI as soon as I hear something. I hope you all are doing great!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/15/2009 7:36 PM (GMT -7)   
Stacie, I am so sorry you are hurting. Flares are beasts and to have the added nausea
is just too much. I get horrible flares when the weather changes from warm to cool, damp
and rainy. I have been flaring for three weeks now and I am blaming it on the weather.

I hope your MRI results turn out well. I am sure you are anxious to get them. Waiting is
difficult. Hope you get relief soon. Sending some prayers and gentle hugs your way!

Keep us posted

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/15/2009 8:13 PM (GMT -7)   
Stacie, I am really sorry about your flare. You sound so miserable. The work thing is a hard call. Maybe your doc can write a letter for a leave of absence for a few weeks or so to see if that helps. I know with some employers you can get short term disability. I kept cutting back my hours over time until it just didn't make sense for me to work anymore.

I hope the prednisone kicks in and helps. Just keep getting lots of rest if you can. Sending gently hugs your way.
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/15/2009 9:09 PM (GMT -7)   

Sounds just awful, Stacie - so sorry it's gone from bad to worse with the nausea.  I hope you don't need the prednisone, but whatever it takes, right?  Hang in there ....waiting for results on top of it all isn't easy either.   Sending good thoughts and prayers...hugs too.

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


Monalisa <3
New Member


Date Joined Oct 2009
Total Posts : 11
   Posted 10/15/2009 9:16 PM (GMT -7)   
how do you know you're in a flare? some of the symptoms everyone is saying sound so much like what i'm going through like every 2 months. and often the doctors want to put me on pred but i'm so scared i say no. if i'm actually in a flare should i try the pred?? what do some of you experience with it cuz i'm really freaked out by it.

Jenkstrojanmom
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 10/16/2009 12:01 PM (GMT -7)   
MonaLisa everyone has different sypmtoms leading up to a flare and some flares just happenout of the blue. I know for me I get a headache I can;t get rid of slight flu like symptoms,really tired and then the flare. While in the flare I have the same things as before and the flu like symptoms turn into all out pain in the jointss,slight fever,inability to walk,can not eat,just a miserable feeling. I am not sure it that helped you out any I hope it does. Please don't freak out as you know stress can make you flare.
 
JenksTrojanMom
Lupus,Sjogrens Syndrome,R.A.
Mother of one wonderful teenage son,blessed wife
33 yr old  Teacher Assistant in Okla.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/16/2009 12:06 PM (GMT -7)   
Thank you Robin, Hippi & Lucy,

Well the nausea is back so I took a dose of Pred, it's not as bad as it has been but of course I couldn't muster the strength to go to work. My head is feeling quite funny too on top of a headache! Haven't heard about the MRI yet, maybe soon?!?!

Monalisa, a flare is usually new or worsening symptoms. Lupus attacks my GI tract so when I'm in a flare I usually get abdominal pain, frequent bm's, etc. I also get an increase in fatigue, mouth sores, headaches, increased joint pain, etc. None of us like Pred but sometimes it's the only med that can get things under control and it's not a part of my daily regimen, I only use it when flaring. It sounds like your lupus is not under control with your current meds and you may need to have them adjusted or try a new one. You should see your rheumy and let him know how you are feeling. Take care.

I hope everyone has a great weekend and thanks for being here!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/16/2009 1:02 PM (GMT -7)   
Stacie, so sorry to hear about the way you're feeling! I understand....for the last few days I've been feeling like I've been hit by a truck. I was physically in the office for exactly 3 hours this week, although I admit I was able to do some work from home.

I'm new to lupus, at least new to the idea that I may have lupus, so I had the same question as Monalisa. It seems as though I may be in a lupus flare too; my symptoms this week have been headaches, "floaty" feeling like my head is about 3 feet above my body, MAJOR brain fog, exhausted no matter how much sleep I get, pain that jumps from joint to joint at random, vertigo, and a butterfly rash that pops in and out on my face. I also have double or triple vision (vertically, which is weird!) quite frequently. I don't think I should drive when I'm like this.

I've been having gastric symptoms as well (nausea, diarrhea, etc).....I have celiac disease too (as do you) so I thought that maybe I had been glutened accidentally, but apparently it's possible that it's part of a lupus flare?

Thanks so much for your posts....it helps to know that I'm not alone in this and that my symptoms don't actually mean that I'm dying, but could be normal for a lupus flare-up! :)

JoAnn

P.S. When will you hear about your MRI results?
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/16/2009 1:10 PM (GMT -7)   
Stacie, wish you were feeling better. I caught the flu and it has hung around for quite a while now. Hubby is sick too so I know it isn't the lupus.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 10/16/2009 4:37 PM (GMT -7)   
So sorryy Stacie, I will deffiantly be praying for you!!!

Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/16/2009 5:37 PM (GMT -7)   
I have been feeling horrible for the last three weeks, the weather has been insane in my area, but yesterday and today has been teh worst that I have felt in a long time. Nausea, pain in my stomach, my fingers, wrists, ankles and toes hurt so bad and I have a nagging headache that ust won't go away. I have been fevered off and on as well and just feel like crap.
 
I am sorry you are feeling so tough Stacie, but I know exactly how you are feeling. It sucks to feel this bad and to know that we just have to suffer through it. I hope you feel better soon!!!
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


Jenkstrojanmom
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 10/16/2009 7:09 PM (GMT -7)   
Wow sounds like everyone is having a hard time. Prayers all around. Big gentle hugs to all.
 
JenksTrojanMom
Lupus,Sjogrens Syndrome,R.A.
Mother of one wonderful teenage son,blessed wife
33 yr old  Teacher Assistant in Okla.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/16/2009 7:45 PM (GMT -7)   
Thank you JoAnn, Redrose, Amy, Connie and Jenkstrojanmom,

JoAnn, I read your post about how you were feeling and work, etc. I wanted so bad to respond but was just too sick but I felt as tho I could have written every word of it so you are definitely not alone! Do you have an upcoming appt with your rheumy? Be sure to make a list of all the problems you are having, may be time to change some meds around or add a new med to the "daily cocktail". If you do have lupus, over time you will learn to listen to your body, some flares you may recognize and some you may not, especially if they are weird! I do hope you find some relief soon! I was hoping to have my results today but maybe Monday now.

Redrose, praying you and hubby get over the flu quickly and it doesn't go through the family again.

Amy, thank you for the prayers and I hope you know you are in mine as well :)

Connie, our weather has turned cold, we're in the South (N. GA) and boy do my joints hurt! My joints don't like the cold, wishing for spring to come quickly!

Jenkstrojanmom, yes, it seems a lot of us are flaring, I hope we ALL feel better soon!

Thanks again for all of your support, it means a lot! :-)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

Post Edited (jhmom) : 10/16/2009 8:49:07 PM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/17/2009 2:28 AM (GMT -7)   
Stacie,

I'm sorry to hear that things have been so rough for you lately. It seems that the change in weather is affecting lots of folks. I hope this flare goes away real soon.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/17/2009 8:29 AM (GMT -7)   
jhmom said...

JoAnn, I read your post about how you were feeling and work, etc. I wanted so bad to respond but was just too sick but I felt as tho I could have written every word of it so you are definitely not alone! Do you have an upcoming appt with your rheumy? Be sure to make a list of all the problems you are having, may be time to change some meds around or add a new med to the "daily cocktail". If you do have lupus, over time you will learn to listen to your body, some flares you may recognize and some you may not, especially if they are weird! I do hope you find some relief soon! I was hoping to have my results today but maybe Monday now.


Thank you Stacie, I do have an appt with my rheumy on the 28th. It's a good idea to make a list of symptoms....I know that when I see him I usually forget a lot of the things I want to tell him unless I have it written down.

Praying for relief for all of us who are flaring right now!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

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