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Taina
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/5/2011 2:31 AM (GMT -6)   
Hi everyone

I am new to all of this but I am just feeling so helpless that I guess I just need to vent to people who will understand. I don't have Lupus myself, but my mother has had it for over 10 years. I have Coeliac disease, which is also a form of autoimmune disease. As of about a month ago my mum has suddenly taken a turn for the worst which is just terrifying as she is the only family I have...

For a long time she suffered from fatigue and not much else. Over the last couple of years it seems that she's been getting a new symptom every week. She can't sleep through the night due to severe headaches, during the day she is off balance, can't focus or concentrate properly, just feels really "slow" and like everything is a massive effort.

In the last month she has become so exhausted she can barely get out of bed, she feels like she's been hit over the head and just can't get it together, she's also developed nausea and has a sore stomach. She also suffers from severe agitated depression and it just seems like she has given up...

I try to stay positive for her but she feels like she is suffering in silence because nobody truly understands and the doctors are no help, maybe because they don't really know what to do or maybe they just don't hear her when she's telling them she feels like she is dying...

My mum is one of the strongest people I know and to see her like this is the hardest thing ever....what can I do?????

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/5/2011 10:05 AM (GMT -6)   
(((((((((((((((gentle hugs)))))))))))))))
I know it's scary to see your mom feeling poorly when she's always been your rock. Hang in there.
Now down to business...
What kinds of medicine is she taking? Some medicines can cause problems like you're describing. Also her body might have become used to the medicine causing it to become ineffective.
Has she seen a nurologist? A different Rhuematologist?
Joy

Taina
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/6/2011 3:03 AM (GMT -6)   
Thank you Joy, just had to have a little vent!! But also really appreciate any advice I can get. We live in New Zealand and there really isn't much support or knowledge available..

I know Plaquenil is one but am getting her to write me a list so I can do some research...I will post when I have them, would really appreciate any insight.

I know she's had an MRI which didn't show anything. She has an appointment with a psychologist at the end of the month to address the cognitive issues. Unfortunately not option to see a different rhuematologist..

Could it be a flare? I've read about stomach problems being a possible symptom..Don't know about all these headaches etc

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/6/2011 5:57 PM (GMT -6)   
I get random headaches, so it's possible.
She maybe in a flare and need something extra to get her through it.
Push for something extra from the doctor.
Joy

Taina
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/7/2011 1:27 AM (GMT -6)   
She's on Plaquenil, Amitriptyline, Fluoxetine and Naprosyn - just wondering what peoples' experiences have been with these medications?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/7/2011 6:50 PM (GMT -6)   
I'm only on plaquenil and I've had no trouble with it.
Joy

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 9/7/2011 8:37 PM (GMT -6)   
I'm not on Plaquinel. I am on nothing. I saw the retina specialist today and his description of my eye problem is that the vitreous gel "popped." I now have an addition to my SLE...permanent "spider fiber" floaters! They did not tear the retina but they are there and may not leave. As if having Lupus wasn't enough!! One doctor said it could possibly be related to Lupus, as AI diseases can affect every part of your body. I have not heard from anyone on this forum having eye problems ...even on Plaqinel..and I would really want to hear from anyone who has had these problems so I wouldn't feel so alone with all of this.......
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