hello we have lupus. i have lupus. don't like it a bit i've asked my immune system to get right over and over its just won't listen. for a few years now plaquinil, sun block and i have been battleing the red face. and just the other day i learned that lupus is the reason why i can not get a full nights sleep in fact i wake up for no good reason 3 or 4 times a night every night. my job is very physical so this is really draining me. i moved to dallas from san diego a few months ago and no longer have access to medical cronic but thank god it is availiable here under the table.
I'm Rob. Welcome to WHL. I was diagnosed with SLE back in 2004. I know what you mean about not getting a good night's sleep. I wake up at all hours of the night almost evey night. I'm no longer working, and have been on full disability since the diagnosis. I see that you are a shipwright, must be very physically demanding. Does brain fog ever slow you down at work?I had fog so bad that I had become a safety hazard in my own shop. I used to work in the firearms industry, and I was really screwing up both in the machine shop as well as at the range. Fatigue was pretty much like walking around with a lead blanket over me. Not good, but what can you do.
Anyway, just wanted to say hello and welcome!
hey there robert,
welcome to the forum. we have several guys here, and they all seem to circle around each other....hope you find a safe have here.
sorry that sle is starting to affect your job. Like rob, i have had to make drastic changes in my professional life, but that just opens new doors - ok maybe only windows.
glad you are here, i look forward to sharing stories with you.
share a smile today
Welcome to the group...the sleep issue was a major problem for me..and until I got that somewhat under control my pain/rashes was worse. I call it... " sleepus interruptus"..hahahah. Lack of sleep = pain and pain =lack of sleep and so the cycle begins. I take a very low dose antidepressant at night and it is a God send. Although I do not suffer from depression these drugs seem to work well with Lupus oddities. It makes me stay asleep better than I have slept in YEARS! I take Plaq during the day. You might want to inquire when you can get med. Also, they are inexpensive drugs. Best of luck.
Last edited by pandagirl; 04-03-2010 at 05:43 PM.
Welcome to the site! I guess you could say I am new here, since I signed up awhile ago, but haven't posted much since then. I have SLE too, and I can so relate to the no sleep thing! I feel like I am going crazy sometimes! I don't have any problems getting to sleep, but I wake up after only 3 to 4 hours almost every night! Then I can't get back to sleep. This really affects me bad! I am so tired and want to sleep, but can't stay asleep for long. I have been taking Xanax recently at night and it has helped some. This was prescribed for anxiety by my GP and it has given me some relief. Hang in there!
yea very physical and sometimes ill just shut down i get weekends off but sometimes i don't and it will all come crashing down and i end up just laying in bed for a couple of days everyone expects so much no one understands because i dont let it show i just dissappear and with the red face everyone probably thinks im a junkie i tried meth for energy but with the good was the bad and had to stop that madness now i have slowed down a little i quit the shipyard in san diego and moved to dallas and took a job in a mill doing machine maintainence its still physicaly taxing but much better than nassco i thought about disability but i am putting it off as long as i can i couldnt meet my obligations with the amount i would get.
Welcome to WHL. We just made the opposite move last fall - from San Antonio, Texas to the Monterey Bay in California. I'm enjoying seeing the ocean every day so much that it will be really tough to move back to Texas in 3 years.
You will find quite a few WHL members live in Tx., especially in the Dallas area.
I'm also one of those who has problems sleeping. I used to sleep soundly all night, but now I'm awake every 2-3 hours. My hubby jokes that I sleep like a baby - LOL!
thanks for your reply thanks to all it is good and bad to know im not alone with this i have been taking hydroxychlor since 04 off and on and when i was in san diego i went to tijuana to buy plaquinil over the counter for the same price as generic here in the states sleep is a real problem for me i go to bed around 10pm wake up at 12am go back to sleep to wake again at 2am then again at 4am then the alarm goes off at 5am i feel like a truck ran over me so i drink coffee take naproxin and get ready for work by the end of my work day im exhausted dirty greasy and ready for a hot bath more naproxin and a nap sometimes i get one sometimes i don't i try to keep some good cronic to smoke in the evenings although it is very relaxing settles my stomach after the hydroxychlor and increases my apetite it also puts me at risk of loosing my job and or getting arrested in a transaction so that will have to stop just dont want to stop it seems like all thats left that makes me feel better ive tried xanax and valume i dont like the way my body feels when i take them i want my energy back and would love to get a good nights rest.
thank you for your reply yea it seems that a lot of us have the sleep problem ive taken 4 tylenol pms and still wake every other hour so i just don't bother taking them anymore the worst part of the getting up all the time is that i smoke so time and again i find burns in my carpet thinking wow did i do that well of course i did i worry that im going to burn myself up.
Welcome to WHL. I didn't realize that so many of us had sleeping problems. Well everyone and especially Robert. One of the drugs that I take for my Parkinson's has helped me immensely with my sleep problem. Before I started taking it I woke every 2 hours no matter what; since I started taking it I wake maybe once or twice a night. That 's unless I'm having a bad night where I don't sleep at all.
Once again though Robert welcome,
Feeling better now that Easter is here and I've sung my best at church.
I also slept good last night
Just realized that I forgot to mention that it's the muscle relaxer tizanidine that helps me
Last edited by Nonna; 04-04-2010 at 05:19 AM.
Reason: cause I can't remember everything
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