have you always been this tired?

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Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 1/11/2009 12:18 PM (GMT -6)   
Hi all.  I just had a generel question for everyone with Lupus.  Have you always noticed yourself to be tired even before the diagnosis?  I've been talking with a doctor and told her how even in high school I would be the kid that came home after school to crash for about 2-3 hours before doing homework.  Also I would find myself taking frequent naps even when I was in grade school.  When we would leave my grandma's house my goal was always to stay awake long enough to see this cool round barn restaurant only about 15 minutes away, but I never usually made it that far.  My parents didn't have to set weeknight curfew for me either because they knew they could depend on me to get home in time-usually because I was exhausted.  So, I am in my early 30's and was diagnosed with Lupus a year ago, but really I'm thinking maybe I've had it longer.  My mother was never one to want to take me to the doctor because she never thought anything was serious enough to go and she would whine about having to take work off to take us.  (like we could help it that she had 6 kids).  I can also recall as a young teen some swelling in my right knee near a spot that I had an injury as an 8 year old, and my joints did give me troubles quite a bit.  I guess my ultimate question to everyone is now that you've been diagnosed, do things in the past now make some sense?  Have other people thought like this, or are most symptoms brought on quickly?  Thanks.
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis

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Date Joined May 2005
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   Posted 1/11/2009 12:28 PM (GMT -6)   
I was never this tired before lupus (except immediately prior to diagnosis), but I have always been somewhat low energy in relation to my peers at whatever age.

I think it may be somewhat related, but can't be used as a predictor because there are so very many reasons for a person to be low energy - some as simple as personality.


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
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Date Joined Mar 2006
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   Posted 1/11/2009 12:52 PM (GMT -6)   

There are so many things in my childhood and early years that I always wondered about and that were never explained. When I was 11, I got so tired all the time that I was missing two or three days of school a week. I was diagnosed with hepatitis (they called it 'infectious hepatitis') and I was told to spend three months in bed. When in my 50's I was involved in a blood drive so for the heck of it I had my blood tested and it showed that I had never had hepatitis.

Then when I was 14 my left ankle swelled to double it's size and I couldn't walk on it. I eventually had exploratory surgery and samples were sent to the Mayo Clinic, and all came back negative. My feet swelled in college and afterwards when I walked too much. My rheumy thinks these and other mysteries were all the result of autoimmune problems. My dad was an executive with a multinational corp. so we lived in South America my entire childhood and I've wondered if that had anything to do with my whacky immune system.

I have a hunch that my "hepatitis" was my first lupus flare. I did have mini flares for years during my search for a diagnosis. I guess we'll never know, and as Lynnwood says, there can be so many reasons for these events.
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

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Date Joined Oct 2004
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   Posted 1/11/2009 1:04 PM (GMT -6)   
Hi Tammy, like you I remember I demanded a lot of sleep when I was kid, more so when I was a teenager. I've always demanded 8+ hours of sleep at night and as my disease progressed before I was officially dx and now I need more than that, sometimes 9-11 hours of sleep to feel good. I never experienced the "extreme fatigue" until January 2004 after I got strep throat and all of my other symptoms were magnified 100% (i.e. joint pain, etc). I would go to the doctor and have to come home and take a 2 hour nap. Once I started on plaquenil about six months later it really helped a lot.

Another symptom I noticed was my reactions to the sun. I grew up on the lake from the time I was 8-15 years old and suddenly when I was 15 I had my first reaction to the sun and from then on when I was in the sun I would experience a headache, fatigue and a rash on my legs and chest. It wasn't until I really started feeling poorly that I put all these things together ..... then it all started to make sense.
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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

Veteran Member

Date Joined Jul 2005
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   Posted 1/11/2009 4:27 PM (GMT -6)   
I'm like Lynnwood and was never this tired, but I did seem to have lower energy than other people my age. THings did change though when I got a bad case of mono my senior year in high school in 1985. I never felt like I regained my energy after that and also got sick a lot after that. I'd go through time periods where I would do okay for a little while and then my body would just crash.

I hate the fatigue of lupus. I was just thinking today that I'm so sick of feeling this way.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; 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



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Date Joined Dec 2006
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   Posted 1/11/2009 8:12 PM (GMT -6)   

Hi hun, no I was one that if my mom didn't nail my feet to the floor I was no where to be found. Now if I am up an hour I'm doing good. I went away for 6 hours one day and it took 2 days to recover.

Now my son is another story. He was in the army. In fact in Iraq so I know he was tested for everything. But when he was younger he was in bed by 8 and up by 6 or 7 or 8. weekend weeknight it didn't matter. Even as a a teen ager. Plus I remeber one morning when he was about 10 he drug himself down the hallway to the kitchen where I was because he couldn't use his legs. That lasted a very short time. I assumed it was growing pains. He was medic and came home with MERSA but that was the only thing his blood ever showed up with wrong. He's 28 now and he still goes to bed at 8 oclock. I just figured he was a morning person. confused




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Regular Member

Date Joined Nov 2008
Total Posts : 106
   Posted 1/17/2009 6:45 AM (GMT -6)   
I’ve only had extreme fatigue lately with my latest flare up that started in September, but prior to that I would tend to be tired driving home from work then proceed to take a nap once home for 2-4 hrs I didn’t think much of it as I do very physical work. I’m just now realising that being sore (muscles ‘n’ joints) and tired all the time isn’t normal. It been like that for at least the last ten or more years. I did notice last year during camping just before my flare up that I was tired a lot and had to take naps during the day.

Hopfully your fatigue will get better

DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg, Metoclop 10mg and numerous other supplements 
Life is what you make of it.  Just something I try to remind myself every day.

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 1/17/2009 9:42 AM (GMT -6)   

Hi Tammy. Like Carol, I was always on the run and my mom called me Go Go Gloria. I had a couple of times later in life (15-20 years ago) that I think may have been flares, but I was working full time, going to school, running, and caring for my family so it was probably my stupidity. eyes   My symptoms really began to manifest in 2003. Now I fight fatigue every day. Mornings always suck and I can hardly wait 'til my prednisone kicks in. I'm so sorry that you became sick at such a young age. I still have some positive energy, so I'm sending some to you. Love, Butterflake

Systemic Lupus ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS 
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Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 1/17/2009 11:30 AM (GMT -6)   
Hey Tammy,
I remember having less energy than my mother when I was a kid.  she could walk all over town, and still be energized.  I on the other hand was exhausted waiting for the bus to come pick us up to take us back Home.  This had always been true.  at times it was better than at other times.  And I remember when I was ten or eleven, that I had pains in my right leg and was not able to walk on it for awhile, and unable to lift my leg because of pain.  the doctor could lift it, without pain, but I couldn't.  this lasted for a few weeks.  the doctor told me that I was trying to get out of going to school.
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
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Veteran Member

Date Joined Apr 2006
Total Posts : 1342
   Posted 1/18/2009 4:01 PM (GMT -6)   
I was never tired before getting lupus (mctd) and had boundless energy my whole life.  Things have improved for me over the past 3 years as I have recovered my lost strength from polymyositis but I get tired very easily compared to pre illness.  Have not had a flare so I am not dealing with ups and downs like most people with lupus.  More like old age.....

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/18/2009 5:46 PM (GMT -6)   
Hi Tammy,
I was so tired, drained and fatigued about a year before my diagnosis.  It was mostly due to the chronic anemia I had, but no one tested for  eyes .  When I was diagnosed with Fibromyalgia about a year after my Lupus diagnosis, I got really tired and fatigued too. 
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
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