All I want to do is sleep. I have never felt more exhausted than I do right now. I have been sleeping 11-12 hours a night recently because my normal 8 hrs was not helping any more. I have an appt with a rheumatologist in a few days. My hx is: diagnosis of subcutaneous lupus after several years of rashes that did not clear with topical steriods - biopsy done that showed lupus. I had fatigue and joint pains. I was put on plaquenil which worked. I stopped it because I was working overseas and could not get it, but I did fine - minor problems but I avoided the sun and rested a lot. My labs were always borderline until just before I went to work overseas and had a false positive vdrl but did not follow-up with that because it happened just before I left.

Because of my job, I am in and out of the heat and sun all day - I work in home health care. I was ok until this summer when I just reached the point of exhaustion. I just thought I needed some time off and went to the beach with my daughter and grandson. I was not in the sun a lot but some and I used sunscreen. It has been downhill from there. Rash on my face, back, chest, etc. Joints are hurting. Big time forgetfulness and concentration problems. Ringing in my ears day and night. The exhaustion. I already took steps to leave homecare and work inside of our hospital because I know I cannot do the heat and sun anymore.

Last winter I had a serious gi upset that threw me in the hospital for a week. It came on suddenly but was horrible. They did find polyps and a lesion in my stomach but did not know what the lesion was - just a benign lesion they said. The gi doctor was not sure if it was lupus related but up until a couple of weeks ago I continued with gi problems. The problems resolved just as quickly as they began.

I do not know why I am posting here. I think it is because I feel like I am absolutely crazy - sooo many complaints. My urine output has changed and has been foamy. I guess I just dread going to the doctor and the possibility of hearing "everything is normal" when I feel so awful. Thank you for listening.
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replied August 28th, 2004
Dear Skies...
I hear you loud and clear. I have a doctor's appointment next friday and even though I have just recently had a +ana and +lac, I too fear the, "everything's okay..." or "you're not that sick" given how awful I feel.

I hope you're at least able to get back on the plaquenil -- maybe that will help you to feel better.

Best wishes...

Lauren
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replied August 28th, 2004
P.s.
This board is really slow and doesn't have much activity on the weekends, so don't feel discouraged if you don't get many responses.

Wink
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replied August 28th, 2004
Thank You
Thank you for your reply. I am going to ask the doctor to please put me back on the plaquenil. I am discouraged because the exhaustion is so overwhelming. I did nothing today but read and nap but I feel like I did hard labor under the noon day sun. Thank you again for your reply. Desertskies
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replied September 2nd, 2004
Active User, very eHealthy
Welcome desertskies!

It sounds like you've been having a rough time of it lately! I am so sorry. I have had some issues with my gi tract. Mine were a cross of lupus issues and by proucts of the drugs I take to control my lupus.

And the fatigue! There are some days that I have slept 20 of the 24 hours, and I wake up sleepy! *sigh* I have found though that naps, if possible, help during the "down" times and hot baths help me, as well.

Again, welcome to the group! Smile

hugs,
ladybrannon
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replied September 10th, 2004
Slow In Replying
I am sorry that I am slow in replying. I appreciate your response! I saw the rheumatologist - basically a typical initial visit and I will f/u again next month. He said that the rash on my face is the malar rash. Can you have the malar rash with just subcutaneous lupus? Do you ever have a mixture of rashes?

When you sleep a lot, do you feel guilty about it? I do because I have so much that needs to be done. I am really struggling with feeling guilty about getting behind with everything.

The doctor said that my joint pain appears to be osteoarthritis and wanted me to take viox or celebrex. I told him that I rather just live with the pain than cause my stomach to hurt worse than it already does. He did give me a cream that really helps.

He did not want me to start back on the plaquenil until all of my labs are back. I just need some energy!

Thank you for your help! Desertskies
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replied September 11th, 2004
Active User, very eHealthy
Great to hear from you again!

As for the rashes, I have had so many different types I couldn't count them all. Seriously. Let me clarify that I have systemic lupus.

About feeling guilty...I used to, but I don't anymore. It is not something I can help or change...Anymore than I can change that I have brown eyes. I just learn what activities, actions, etc. Make me excessively tired and try to learn how to adjust for them. I also nap. It keeps me awake when I know I *have* to do things.

Hugs,
ladybrannon
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replied January 3rd, 2006
ladybrannon wrote:
welcome desertskies!

It sounds like you've been having a rough time of it lately! I am so sorry. I have had some issues with my gi tract. Mine were a cross of lupus issues and by proucts of the drugs I take to control my lupus.

And the fatigue! There are some days that I have slept 20 of the 24 hours, and I wake up sleepy! *sigh* I have found though that naps, if possible, help during the "down" times and hot baths help me, as well.

Again, welcome to the group! :)

hugs,
ladybrannon


hello....I just recently joined this forum, and have posted several replies. I was dx'd with sle in july, 2005. My main reason for seeing the rheumatologist was for joint pain, possibly fibromyalagia...But tests proved to be sle. I am currently on prednisone 25mg, and plaqunel 200my 2x /day. Must have had lupus longer than diagnosed because my platelets dropped down to what is known as "panic level", 20,000. Was immediately referred to a hematologist. That was the reason for the prednisone. Plaquenil was stopped for a while; perhaps that was causing the drop in the platelets.

The prednisone is doing some good, but have gained about 30 lbs, get tremors of upper extremities, sweats and shortness of breath. No gi problems as I take prevacid daily. I get very tired in the late afternoon...It comes over me very quickly...And I have to lie down and nap. My mood sucks.

Will be seeing both doctors in the next 2 weeks. Hopefully the prednisone will be decreased some more.
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replied January 3rd, 2006
Re: Craving Sleep
desertskies wrote:
all I want to do is sleep. I have never felt more exhausted than I do right now. I have been sleeping 11-12 hours a night recently because my normal 8 hrs was not helping any more. I have an appt with a rheumatologist in a few days. My hx is: diagnosis of subcutaneous lupus after several years of rashes that did not clear with topical steriods - biopsy done that showed lupus. I had fatigue and joint pains. I was put on plaquenil which worked. I stopped it because I was working overseas and could not get it, but I did fine - minor problems but I avoided the sun and rested a lot. My labs were always borderline until just before I went to work overseas and had a false positive vdrl but did not follow-up with that because it happened just before I left.

Because of my job, I am in and out of the heat and sun all day - I work in home health care. I was ok until this summer when I just reached the point of exhaustion. I just thought I needed some time off and went to the beach with my daughter and grandson. I was not in the sun a lot but some and I used sunscreen. It has been downhill from there. Rash on my face, back, chest, etc. Joints are hurting. Big time forgetfulness and concentration problems. Ringing in my ears day and night. The exhaustion. I already took steps to leave homecare and work inside of our hospital because I know I cannot do the heat and sun anymore.

Last winter I had a serious gi upset that threw me in the hospital for a week. It came on suddenly but was horrible. They did find polyps and a lesion in my stomach but did not know what the lesion was - just a benign lesion they said. The gi doctor was not sure if it was lupus related but up until a couple of weeks ago I continued with gi problems. The problems resolved just as quickly as they began.

I do not know why I am posting here. I think it is because I feel like I am absolutely crazy - sooo many complaints. My urine output has changed and has been foamy. I guess I just dread going to the doctor and the possibility of hearing "everything is normal" when I feel so awful. Thank you for listening.


hello desertskies, weakness is overwhelming at times the fatigue and exhaustion takes over. How do you bring yourself out of it? When your tiered do you have something to look forward to everyday? A project that you enjoy, someone you love to see? This becomes very hard to do but I have learned you take control of the disease. Your mind is stronger than the pain. You cant let lupus overcome you as a person. I know how much it can if you let it. Your not crazy most rhuemetologists are not concerned with there patients as much as they should be. Not all but some are only concerned with pushing more drugs on you. Vitamins and a well balanced diet are the key. Look up nutrients that your body needs. There are plenty of websites where you can find info.. To make a difference. I am now weening myself off the steroids I have been on for over a year. This is a difficult task for the fact that I depend on them to wake me up. As I say. They help me function better. But the side effects are terreble. Keep your head up and focus on things that help to keep you happy and you.

Nikki
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replied January 4th, 2006
Sleep
Hello, I feel your pain...Or fatigue, rather. I am a mother of three ages 4, 2 and 1. All my life I have survived magnificently with only a couple hours of sleep (with the exception of first trimesters) until recently. I was diagnosed with lupus a little over a year ago after having symptoms as early as high school, and even after the births of my children (one of which being autistic) and suffering from extreme hypothyroidism, I always found the energy to accomplish everything I set out to do. My house was always immaculate, I work, and I have a 4.0 in college to date. But recently I can't get anything done. After 9 or 10 hours of sleep (as opposed to my usual 4-6) just the thought of getting up makes me lethargic. And this is just very recently that I am feeling this way. I have encountered flares to the point that even looking through the window at the sun I become nauseated, but nothing holds a candle to the fatigue I feel now! I can't even enjoy my children and husband the way I used to, and I thought it was just me! Thanks for making me feel understood.
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replied May 3rd, 2008
Re:Craving Sleep
I have also been recently diagnosed (went in for sudden joint pain) with subcutaneous lupus. I must have had it for a decade before the diagnosis. I felt so sleepy a long time ago that I started drinking massive amounts of coffee. Now I have about 5 large cups per day. Before the diagnosis I tried quitting coffee a few times and my speech was slurred and slept for 20 hours per day. I went right back on it. I have friends who laugh at me and always said: "I can see you change some habits over the years but I can never see you give up coffee". I always knew I don't like the taste of coffee but that somehow without it I am like a zombie. I drink it like medicine. I take tiny sips so I can drink a cup (I don't mind the coffee when it's cold) over a period of 3 hours. I never would have made the connection between the fatigue that is constantly (horrible during flare-ups) and lupus. I had the skin lesions during times of stress but I always thought stress always comes accompanied with some kind of skin problems. The fact that they were small (chickenpox-like) lesions rather than pimples never raised a warning flag. Hindsight is always 20/20. Right? Anyway, I feel very sad that you feel so exhausted. At least you have the strength to deal with it without coffee. I don't think I'll ever resort to drugs but if my rheumatologist tells me one day that I should stop drinking coffee, I might have to take the drugs to live rather than sleep. Good luck to you!
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