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Autoimmune Disorders and Exhaustion

2K views 10 replies 5 participants last post by  frlsgirl 
#1 ·
Hey, all! I know some of you are aware of the autoimmune issues that I deal with, and the good news is that it's generally under control at this point. :D Honestly I feel great, except for how darned exhausted I seem to be all the time now. I just had the routine labs pulled today so we'll see what those tell us but so far my kidney function is back to normal and everything else is going back to normal levels as well.

It seems like it's only been within the last 2-3 weeks that I've been this tired. I have a heck of a time getting up for work in the morning and I don't feel alert until around 11am at the earliest, sometimes even later than that. It's not just sleepy tired either. Sometimes it gets to being borderline confusion at points, and it has the potential to return later in the evening as well. Caffeine helps to a point, but too much makes me jittery of course and I'd rather not rely on that if I can avoid it.

As for medications, I'm on Cellcept and Prednisone, though I'm being tapered off the Prednisone (thank god, I can't stand the stuff). I get 8-10 hours of sleep a night generally, which used to be enough. My doctor is not concerned about my drinking habits since I don't drink very often so I don't believe that it is a factor, though I'm open to all ideas of course. It's gotten borderline debilitating and I haven't been riding much because I'm just too tired after work most of the time. :/ Halp!!!
 
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#2 ·
Sounds like we are in the same boat! I'm down to 20mg of Prednisone (was on 60mg) Cellcept and Arava. I wish I knew the solution to fatique, I have lupus, my joints are finally feeling better, but I could sleep all day. If you find the answer let me know, I'll try anything!!
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#3 ·
Welcome to my life for the past year!!
I've had lots of success with Chinese herbs. Some success with treating my marginally low thyroid with Synthroid. And basically cutting out all the processed crap. Trying to cut out sugar but that is much harder!
And go to sleep religiously at the same time each night - no exceptions!
I've gone from needing 18-20 hours of sleep to 10 with no naps on a good day :) making it to 8 once or twice in a really good week!
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#4 ·
MsLady, EXACTLY!!! I'm not crippled anymore and I can't be thankful enough for that, but shoot... I'm down to 20mg from 60mg as well. :shock: That's kinda weird!

Anebel, from what I've read diet doesn't tend to do a whole lot for people with lupus, but I've been trying to eat healthier anyway just so I don't look like a dumpling in 10 years haha. It's particularly tough when Prednisone makes you want to eat EVERYTHING, however! :twisted: Out of curiosity what herbs are you taking? I'd be interested to know more, I'll try just about anything!
 
#5 ·
For ME (no idea what it is, doctors have been utterly useless in that regard) I have gotten the treatment for what ails me from an acupuncturist/massage therapist/chinese herbalist/naturopathic Dr. who I pay lots of money to poke needles into me and feed me herbal meds. She is awesome - I highly recommend everyone finds one!! Basically after a description of symptoms and some testing, you will try some herbs and if they work, get more. I'm on a Ginseng Nourishing formula that is da bomb.
And about the diet thing, JMO, every human will benefit from eating well :)
 
#6 ·
I got a Nutribullet for Christmas and have been making spinach juice with it daily. That stuff is like crack - instant energy without the dreaded crash afterward.

Might be worth a try. Be careful about adding other junk to it though, otherwise you can turn it into a calorie bomb.

Also basically everything that Anabel said ;)
 
#7 ·
I got a VITAMIX for Christmas. I am like a kid in a candy store lol my freezer is FULL of frozen fruit, my fridge is full of veggies and I have all my protein and Vega mixes lined up. I basically am running a Booster Juice out of my kitchen lol. It's soooo yummy :3
And it makes soup! And sauces with no preservatives and I can sub ingredients when I can't eat something and basically I'm going to be fat and full of delicious whole food and it will be glorious!!
 
#10 ·
I also have the antiphospholipid disorder - that is something that seems to remain with you even when other related issues go away.
I had my first lupus attack aged 12 but doctors had no idea what was wrong back then so it was really just a case of living with it. At 19 I nearly died when it attacked my kidneys and I spent a long time in hospital. I've gone through long spells of no troubles at all other than minor joint pain and then gone totally downhill when it seems to attack some part of my body at random.
It does seem to link with hormonal changes and can totally go into remission after menopause.
I found that stress and getting over tired could trigger attacks and so could illnesses that put pressure on the immune system which then send it into hyper-drive
Having a healthy diet will always be beneficial but its not a cure and when symptoms get out of control a course of steroids is about the only way to go
 
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