newly diagnosed

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Date Joined Aug 2009
Total Posts : 43
   Posted 8/30/2009 5:32 PM (GMT -6)   
I am 22 years old and was recently confirmed SLE. i guess i'm going through a flare right now, but the fatigue is overwhelming. i'm so sad because i can't imagine living with all this for the rest of my life. i'm taking plaquenil but only for a week now. i don't want to do anything, i slept for over 36 hours this weekend and am still exhausted. my scalp is super sensitive, hair is coming out, no appetite, stuffy nose, headaches, and some other things (how do i know if random things i experience are related to the lupus or not?) but the fatigue is by far the worst for me. i can't get myself to snap out of it. will the meds help in time? will i feel like this always? i can't bear the thought of not having any natural energy for the rest of my life...

thank you for the help, i'm glad there are other people out there that know how i feel.


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Date Joined May 2005
Total Posts : 6946
   Posted 8/30/2009 5:58 PM (GMT -6)   
Yes, medications will help you. I don't know if you are seeing a rheumatologist or not, but that is the dr who is the lupus expert. Usually they start with plaquenil, which can take up to a month to start helping with joint pain & various aches.

If your energy remains quite low, they will likely give you some prednisone, which helps with inhibiting inflammation and pain. It also substitutes for the adrenal glands, as they are usually shut down by the time we get to the drs -- they are to tired to produce the cortisal & adrenaline that gives us energy.

So keep talking to your rheumy about every symptom, whether you think it is connected or not, as it all gives the dr more information. When I was first dx I slept about 18 hrs a day and was still totally exhausted -- now I have about my normal amount of energy, maybe a bit less.

There is hope, and you don't have to be upset that you can't force yourself out of it -- this is a true physical issue, you are NOT being lazy or anything like that. The fatigue is real.

Check out, it helps explain to your family & friends why you are so darn tired right now.

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 8/30/2009 6:22 PM (GMT -6)   
Oh Kim!!! I am so sorry, I am sending hugs your way! This really sucks doesnt it! I am currently 21 and was diagnosed when I was 19. You sound like me when I was diagnosed expcept I also had extreme joint pain. They also started my on plaquenil and I will tell you it might take weeks to months for you to feel a difference. I was in a flare for 2 years and I think I am finally on the right medications and I am finally coming out of my flair without high doses of pred. Lynnwood is right, the prednisone (on lower doses) will increase your energy and help with inflamation. When I was on higher doses I had the opposite effect. A lot of people, once on the correct medications can live a somewhat normal life.
Your thoughts are so normal. I struggle with this on a weekly basis...the things that keep me going are supportive family/friends, healing well, and my religious beliefs. It also helps me to write/type my feelings out or even talk to my puppy! She will just lay on my lap and listen and if I start crying she will start licking me and does everything she can to chear me up.
Lynnwood gave some great advice as she usually does :)! I would deffinatly right down everything you find abnormal for your body and give it to the doctor. She/He will be able to advise you. If you would like, feel free to email me. You can find my email address by clicking my name (in the left corner in blue) and you can see my email address!
This is a great support group and hopefully you will stick around so we can get to know you better! Keep us updated on how you respond to the plaquenil



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

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril,  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...


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