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redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 4/15/2008 8:34 PM (GMT -7)   
I am feeling very weak lately. My OB is not sure this is the pregnancy. My checks have been getting rather pink lately. Has anyone had a lupus flare begin with extreme weakness? For me it has usually been pain. If this is the lupus trying to get active I will ask for either an Imuran increase or a short prednisone course.


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, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 4/16/2008 5:10 AM (GMT -7)   

Hi!

That describes my world with lupus flares. I ALWAYS have pink cheeks, ("my how HEALTHY you look, are you sure you are so sick?") eyes and my flares cycle here and away with such muscle weakness I must lie down before I fall down.

sue


God knows, even if I don't....
CNS Lupus 2005, APS
Meds: Plaquenil, Neurontin, Thyroid, Voltaren, Aspirin, Atenolol and Norvasc, Prednisone prn.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/16/2008 5:53 AM (GMT -7)   
Hey Redrose,

Sorry you have this to worry about too. I really try to differentiate between "weakness" and "fatigue" and "tired". Some might say they are interchangeable . . . but they aren't.

Weakness: I try to lift a 5 lb item and put it in an cupboard that is above my chest and my muscles feel very weak like this is just to heavy for those muscles. Or you are climbing the stairs and your muscles feel too weak to lift to the next step. Might cause burning.

Fatigue: everything I do is just too much effort. I feel like I'm wearing a sweat suit under water and dragging all that weight.

Tied: I'm sleepy and need to go to take a nap.

Having said all that . . . you would naturally be weak from being on bedrest/limited activity for so long. But only YOU would know if you are inappropriately weak. I had a pregnancy where I was off my feet a LOT and I was so weak, I couldn't stand long enough to do dishes.

This is something that should be addressed by the doctor. Do you have an appointment this week???

I know you are anxious to see your little boy healthy and whole . . . this can really wear a momma out!!

I hope some of the others have some good info for you.

Some hot tea for you Redrose!

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, Crohns, Diverticulosis, Sjogrens

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


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 4/16/2008 6:18 AM (GMT -7)   
I would talk to your doc about this one to try to determine if it's pregnancy realted or lupus related. One of my first symptoms of lupus was weakness and I still get weak during flares. Let us know what you find out.

I bet you are excited to see your little baby soon :)
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 4/16/2008 7:07 AM (GMT -7)   
A blood test that looks at the inflammation markers in white blood cells might help narrow this down -- there are 4? types, each indicates a different kind of inflammation...they are the _lytes you see on a CBC blood report - neuorlytes(sp), etc. Sorry forgot names of others ones & don't have time to look up right now.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/16/2008 11:06 AM (GMT -7)   
Thanks everyone. My rheumy's nurse said to call tomorrow if getting extra sleep today didn't help. It did some but the truth is as soon as I try and shower or do something like that all my energy and strength will be gone. My muscles start quivering after a few minutes in the shower, I wouldn't be worried execpt it has become exponentially worse this last week or so. Losing some of my strength from all the bedrest I could understand but this is way more than some. Fatigue is a problem too. I am constantly tired no matter how little or how much sleep I end up with. I am really starting to be worried.

As for the little one it will be a relief to hold him and know he is okay instead of just being told all is fine.
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, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/16/2008 6:17 PM (GMT -7)   
Redrose,
   I'm sorry your feeling so poorly right now....((Hugs)). I Hope you get some kind of relief quickly. Hang in there, not much longer! I know it will be a big relief to hold the little one in your arms. You are still in my thoughts and prayers.
                                                         Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 4/16/2008 10:34 PM (GMT -7)   

redrose

I did have a flare start out with me feeling extremely weak, and it turned out that my thyroid was out of whack. I wouldn't neccessarily say that is what's wrong with you, though. When was the last time you had your lupus levels checked? I know towards the end of my last pregnancy I did feel extremely tired and somewhat weak, but soon after the baby was born I was back to as close to normal as I can get. Try not to worry too much; hang in as best you can.

My thoughts and prayers,

Robin


dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day
wife, mother of three


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/17/2008 1:28 AM (GMT -7)   

I am one of those rare and weird cases where all the normal lupus blood work is worthless. If I weren't on Imuran a check of my liver function would be the fastest way to see if my lupus was becoming active again. But, I am on Imuran and my liver function will remain normal as long as I am even if my lupus becomes extremely active. Yep, I got that really rare liver involvement. It is mild and entirely managable so it may be a stroke of luck. Considering the course my illness has taken it is one of the rare ones. I will ask to have my thyroid checked out as pregnancy can screw with the thyroid just as much as lupus can. I am so tired and weak at the same time. I sleep and sleep and sleep but it doesn't do anything for the fatigue or weakness. I know a short burst of steroids would make me feel better while I am on them, but it would also cause water retention. I will definately be calling my rheumy today. I am up right now because I had to pee and realized I was hungry and thirsty. I have been lectured for not eating enough by my doctors, the dieticians, and my husband so when I am hungry I try and eat. I had a bagel with cream cheese for a snack. For some insane reason my food preferences have become completely insane this pregnancy. Worse, I am developing an aversion to meat and really need to get the protein in. Oh well, I just want the pregnancy to end safely for baby and me. We knew there was a very high probability I would lose my remission at some point and it has lasted longer than any of us had dared hope. Maybe we can push it back again, in December I began developing neurological symptoms again so we added Imuran as I needed off the prednisone, if we up the Imuran or add prednisone back in short term. I will let my rheumy decide what route to take. The OB docs do not think the weakness is from the pregnancy, especially with my checks getting pink in the usual pattern. It only happens when I have to be exposed to sun- less than 5 minutes at a time, am unable to sleep, or am feeling particularly painful.

I just wondered if weakness was a sign anyone else had ever had that they were beginning to flare because for me it has always been pain and fatigue. Unfortunately, pain during pregnancy has been a pretty constant things since I had to discontinue the celebrex. I really miss NSAIDS and evoxac. I want to thank everyone for their support, encouragement, and willingness to share whatever they personally have experienced with weakness. I will likely be requesting PT after I recover from having the baby (since it will likely be pool therapy I need to be finished bleeding). I need to rebuild my muscles and range of motion.


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, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/17/2008 6:43 AM (GMT -7)   
Hi Redrose:

Whenever I have done to much my family knows it, by the color of my cheeks. I get really red cheeks and I get muscle weakness when I'm having a flare. The best thing for me is to up my pred and get lots and lots of sleep.

I know that you're not wanting to have the pred but if you're in a flare that will help you a lot. I know that you've been going through a lot with this pregnancy and I know you're anxious to hold your little boy in your arms. It will all be over soon and you'll be able to enjoy your son and work and staying in remission.

Good luck to you and your baby.

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/17/2008 7:02 AM (GMT -7)   
The color of my cheeks is also an indication of having overdone it or a flare coming on. Usually the redder the cheeks, the worse I feel. You must be so anxious to get to the doctor tomorrow. The waiting game can absolutely drive you crazy and I hope you get some relief and a beautiful son real soon.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/17/2008 12:37 PM (GMT -7)   
My rheumy wants to wait and see. She said changing my meds now could cause more problems than it is worth. The best option would be prednisone but with my blood pressure and fluid problems this time around it could result in my being delivered earlier than I would be otherwise. She also said it could make the baby get bigger than he would without and given my history of large babies whose shoulders got stuck even if only for a minute or two having this one bigger than he would be without steroids could cause serious complications for both me and baby. Apparently boys have bigger shoulders than girls. I am to rest as much as possible and eat as well as I can. She said after the baby if I still appear to be heading towards a lupus flare we can do a short course of steroids but for now we will stay where we are.

I hope that this little one is able to develop his lungs fast enough as if there comes a time when proof positive of a lupus flare shows itself my OB doctors will deliver me immediately.
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, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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