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Old 01-29-2002, 06:50 PM   #1
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Question lupus and memory problems

Does lupus cause memory loss? Also, does it cause your hair to fall out? I'm losing memory (which isn't fun!) and my hair is definitly getting thinner and thinner! I panicked when I first saw the bald spots. But, I figured it isn't that bad, it could be worse! I have fairly long hair so it isn't super noticable, but then again ......(sometimes it bothers me ) The memory thing does bother me a lot,so I just wondered. (I tend to stay up a lot, pretty late and I wonder if that is NOT helping me.)My (step)sister who has lupus says that the body needs to rejuvinate over night so I should sleep and not stay up all night..What do you all think? Thanks, Nightowl2

 
Old 01-29-2002, 09:31 PM   #2
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Hi nightowl--yes, to both of your questions. Lupus can cause your hair to fall out due to the inflammation in your body. It's happening to me too but has gotten better. I had a couple of spots in the back that luckily are easily covered by hair because of where they are located on my head. So, not to add insult to injury, I started doing things a little differently; like not using the curling iron as much, and just being gentle with it. My hairstylist gave me those tips and it's actually gotten better while my lupus has gotten worse!

And yes, it can also affect your memory and ability to think clearly. I happened to mention that to my doc today during my appt. and like you, I am an insomniac which doesn't help at all!

 
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Old 01-31-2002, 01:48 PM   #3
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Thanks for the reply. I am planning to see my doctor soon.(I have been really hurting during the cold winter season) I thought that I could try to live without the meds or try advil or something like that,(it doesn't work at all!) Hopefully maybe the plaquenil will help. I was afraid to use the meds because I've heard that you could (maybe) lose your eyesight or have kidney or liver problems, I can't remember.I was pretty afraid of trying it. My step-sister says that I really need to SLEEP! She is always reminding me to go to bed and NOT to stay up(hence the name Nightowl2)She has lupus as well.How I got lupus I will never know,but, a former doctor told me that it's just(my) bad luck.(We do not have it in our family at all!) My step-sis' got it from giving birth to her second child or got it after(something like that).Maybe, for me I just live with too much STRESS. I am always stressed out.A friend always describes me as one gigantic ball of stress. I have heard that stress or truamatic events can cause Lupus to occur, that it doesn't have to be genetic. What do you think? That's all, Thanks....Nightowl2

 
Old 02-02-2002, 03:11 PM   #4
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Hi Nightowl--
Unfortunately, while there is no definite known cause for Lupus, it is somewhat genetic. It doesn't matter that your parents don't have it--the fact that your sister has it is very important and it makes sense that you now have it. It is not caused by childbirth! Although in many women, autoimmune diseases (RA, Lupus, MS etc)often become evident after childbirth and this is thought to have something to do with estrogen.
As far as your meds, first remember that the plaquenil will take awhile to kick in. It CAN take up to 6 months but usually will start kicking in after about 3 mos. Most of the meds used to treat lupus do have side effects--some of them have potential Long term side effects. But there is also a danger in not being treated. If left untreated, it can do damage--more damage to your joints and to your organs. You really don't want to leave this untreated. AS long as you stay in touch with your doctors, they should be seeing you on a regular basis to monitor everything. So they will know rather quickly if something changes or is out of the ordinary.

I'm not trying to scare you, but as recent as 20-25 years ago, there were not nearly as many treatments for Lupus as there are today. Because of that, many people with Lupus died. So you can see that leaving it untreated is not a good idea. Please don't underestimate this disease. It is unpredictable and very serious.

I hope this helps!

renae

 
Old 02-05-2002, 06:29 PM   #5
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Hi again.
Thanks so much for writing back! I just saw my doctor and he really thinks that what I am suffering from is fybromyalgia. I am almost always in pain.I can work even if I am hurting,but, waking up and starting the day aren't always my thing.....as well as being on the go ,doing things with friends on the weekend(I am a slowpoke.) I used to be able to be out of my place earlier in the morning.(I am now losing a job, partly because of burn-out and, I feel partly because I never want to start working. I would rather sit around sluggishly and do nothing!)I can't quite believe that fybro' is actually a "condition", or a real "disease".It feels like something that people are making up to get out of a situation, or working. Yet, I've gotta say that I don't feel like me anymore and I hate the feeling of not caring about the things that I used to care about! I don't really like housework and I used to not mind it at all. I just feel so overwhelmed. I have left incredible messes everywhere, because I do not want to lift a finger. I have told myself" I will do it later", and I don't! I am actually worried about it, because I know that my stuff could start a fire, or even close to one....and fybro' not only makes you tired all of the time,but, depressed as well!I am wondering if anyone else shares my dilemma? I know that I am not alone in this....I read something about it in an arthritis magazine recently, but, I am still curious to know if anyone out there is going through this too? Anyone want to commment? Thank you, nightowl2

 
Old 02-06-2002, 11:50 AM   #6
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Hi Nightowl--Oh my god! Yes, I can totally, TOTALLY relate to your situation! I don't have fibromyralgia but lupus and it is truly kicking me in the butt! Housework?? I don't have anyone over because it is truly a pigstye and I' not exaggerating! Like you, I say to myself I'll do it later and don't. Mainly because I just don't have the energy--at all. All of my energy is reserved so that I can work during the week and then the weekends--I just collapse from exhaustion! Not to mention the zillion of other things that I need to get done during the week and especially the weekend. If I could have 2 full weekends in a row when I felt really good--I probably could accomplish quite a bit.

I just wanted to let you know that you're not alone. Unfortunately, I don't have a solution for either of us!

 
Old 02-07-2002, 01:37 PM   #7
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Hi again!,
Yesterday, I was up till about two or three in the am cleaning. In the morning at around eight a.m. I was so tired, but, I had to get up for work. I also think that in having attention defecit disorder keeps me hyper at times(I think that this is hilarious, because here I am I'm tired most of the time and then I need to keep moving all of the time....It just doesn't make much sense!)But, that's me I guess! Hopefully, I will make it through the day today, I have a meeting that can last kind of late(especially when people don't have their "stuff" together.)I will just have to grin and bear it!Rest up, maybe this weekend we both won't be so tired, and put the heat on if you're in a cold enviroment! Talk to ya later! nightowl2

 
Old 07-25-2005, 10:32 AM   #8
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Re: lupus and memory problems

Won't comment on fibro vs. lupus diagnosis, only the fullbattery of tests will help you out on that score. However, the memory loss is true for my child, as well as the hairloss, in a big way! She had long hair, past the bottom of her butt. In her case it was thinning slowly, from all over her head. Not in patches, but with each little hair from all random spots coming out. In short, this was "telogen effluvia" which is fancy for your hair coming out all over because of a major shock to the system. Like lupus, like childbirth, like major stress.....Incidentally, hair IS growing back, shiny & beautiful, taking a whole host of vitamins for that & they are working. The Plaquenil administered immediately also put a stop to that lone lesion, so it too has hair & you can't find it!
As for plaquenil, it seems to have done more good than bad. It MAY have caused a ringing in her ears, or it may have not. (divided medical team) Anyhow, if you do go on plaquenil, you will be tested every 6 months for any changes in your eyes. Our doc says plaquenil damage is so slim these days, and the horror stories you heard about were oldtime versions of plaquenil given without the knowledge we have today. Child also had complete exam, visual field test done as well as fundus photos.
Well, good luck to ya, whether it's fibro or lupus or {insert problem here!}

 
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