new & terrified - Lupus Message Board

loves_poe · 05-30-2001, 11:53 AM

Just found ya'll. Was diagnosed with discoid lupus a year ago. Biopsy revealed it and the only Dr. around here right now is a jerk who honestly didn't even test me for anything and prescribed flexaril:-(. The stuff doesn't even make me go to sleep anymore. Anew Dr. is coming in July but, until then I still can't believe I have it. I have the rash and take plaquanil for it, my joints hurt all the time, I can't sleep at night but, feel exhausted all day and depression.....lol I have it big time and am taking wellbutrin sr 150mg 2x daily. What do I do in the mean time? Anything I can do to alleviate the symtoms? Even now typing my wrist and fingers are killing me I have darvocets for pain but, hate to take more than 1 or 2 a day.

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thanks.....mel

Ann S · 06-01-2001, 09:12 PM

loves_poe,
Sorry to hear that you're having such an awful time with it. Is the dr. that's coming in July a Rheumatologist? If he's good, they seem to understand the disease a little better, which helps them treat you a little better. Darvacet doesn't seem to be a common pain killer used for people with autoimmune diseases........ ususally it's prednesone, viox, celebrex, etc. These help the joint imflamation too. I think most drs. run blood tests every few months to help them get a better idea of how the disease is progressing or if it's in a 'flare'. I'm still looking for the 'good' dr. too!
As far as helping with the symptoms, light exercise IS good for you. It seems impossible to even think about when you're so tired, but it will help. Also, soaks in the tub are soothing. I also wear wrist splints most nights and sometimes in the day if my hands and wrists are really bad . It ain't much, but until your dr. can help, it's all I can think of. Acceptance is part of it too........I can usually accomplish that 3 out of 4 days, then the anger pops out, and then the depression. I know it's hard to fight the depression when you're so tired tho. Cry it out, then start over again the next day. For me, I need to find something different to do or focus on besides my pain and that helps too. A good dr. can help you attain a more comfortable life, but it will never be the same, so.........we all need to try to help ourselves, and each other. Take care, Ann

DeeDee · 06-02-2001, 09:52 PM

Loves__Poe, Sorry you are having a rough time with depression right now. Have you ever tried Prozac? I've been on different antidepressants (trying to find one that works well without lots of side effects) and that worked the best for me. I took the Wellbutrin SR 150 2x a day as well but didn't seem to do me much good either. Made my insomnia MUCH worse, though! (Perhaps it could be contributing to yours, too. I slept LIKE A LOG the first couple of weeks after getting off it.) The alternating insomnia/drop dead fatigue is so draining...That alone is enough to cause depression!! I try to make sure I've eaten something before bed--and if I wake in the night and cannot go back to sleep, I'll do the same. Maybe I just like to eat, but it does seem to help me get drowsy! Also, there is nothing like finally getting in a good sleep rhythm and being awakened by a gnawing tummy...

Oh, there is also a new Prozac out that you can take just once a week. I think there is a website called Prozacweekly.com. If not, I'm sure a web search would turn it up if you are interested. I have no personal experience with it, though, and don't know how it compares with the regular stuff.

My Mom suffers from carpal tunnel and some other ulna nerve thing in her arm/wrist and like Ann said, a splint at night (and some during the day) does seem to help. I'll ask her if she has any other suggestions when I talk to her again.

I sure hope to see a smile attached to your posts soon, indicating some relief! Hope any of these suggestions helps. If we can get even the least relief from one another's suggestions, it makes posting worthwhile. And if nothing else, it sure beats suffering alone! Take care. DeeDee
PS I've also found that Klonopin actually helps with my depression, though it is for anxiety. The more stressed-out I get, the more depressed I get. When I have a good handle on my anxiety, USUALLY, the depression lifts quite a bit.

[This message has been edited by DeeDee (edited 06-03-2001).]

DeeDee · 06-03-2001, 08:17 PM

Loves__Poe,

Just a quick note...I asked Mom and she said she gets a cortisone (sp?) shot every few months directly into her wrist and they REALLY work. Also, I just read that people with carpal tunnel (don't know if that is your problem or similar to it) experience a "significant decrease" in pain and an increase in grip strength with "lyengar yoga". The study was for 8 weeks, 2x week. Good luck! DeeDee

SailormoonK · 06-03-2001, 08:42 PM

i hope things get better for you soon, i understand the doctor problem, i live in an area where i have to drive 5-6 hrs for a ruemetologist, i have 6-7 of the criteria depending on who you ask, and still recieve zero treatment. i have to go to the closest ruemetologist for the first time on tuesday, if i can find the gas money. otherwise, i have to reschedule for more than 2 mo from now. meantime i can no longer hold a pen, typing is nearly impossible and walking is torture. i can understand idiot doctors and hoping for a good one, keep hoping, and remeber sometimes it is worth it to go a little farther for a good doctor. i am learning that the hard way. i have been sick more than 6 years. good luck.