View Full Version : Newbie....just diagnosed

03-05-2013, 05:35 PM

I am a 38 year old stay at home mom. I was recently diagnosed with Lupus. I had symptoms for many years now but I just ignored them, pushed thru the pain, or wrote it off as the beginnings of arthritis. My mom was diagnosed with Lupus in 2003. In 2009 she was diagnosed with ALS. She just passed away on 2/15/2013.

I have 2 kids, an 8 year old and a 6 year old. Last year, I started experiencing extreme bouts of fatigue. I was eventually diagnosed with severe depression. But I knew there was something more to it. For years I complained about my hands. One dr said it was over use. One dr gave me naproxen and said it could be arthritis. Last year I began to feel like I was loosing strength in my hands. I didn't have a grip anymore. I felt like I couldn't hold onto things. I couldn't open up a water bottle anymore. Finally my husband made me go to the dr about it. Because of my family history he decided to test for Lupus. The test came back positive.

I went to one Rheumatoid dr who tested me further and said I didn't have Lupus, I had sjorgrens. He started treating me for that. I still felt the fatigue and lack of strength in my hands. My right hip has had been hurting me and I was experiencing numbness. He just told me it was the weather. I wasn't sleeping well. For over a year, I could barely get more then 4 hours of sleep and usually not consecutively.

I decided to go to another dr, recommended by a friend who has lupus, who tested me again and said I had lupus. I've been on Lyrica but am needing to change it because it's just too expensive for us. Our insurance isn't very good and one month of Lyrica is almost $200.

It has been an adjustment. Somedays I feel really good and then I realize the next day that I've over done it and I'm in bed hurting.

The hardest part for me has been the lack of sleep. I can get 4 hours maybe 6 with sleeping pills. Without sleeping pills I can maybe get 2 hrs. I went for almost a year of not sleeping. I used to be able to sleep really easily. I can't fall asleep before 12 these days and it's usually a very restless sleep even with the sleeping pills.

I've been denying the whole prognosis for a while now but after my mother's death, I realize I can't do that anymore. I have 2 small kids and my biggest fear is that they develop this disease also. I don't want them to experience the kind of pain I go thru on a daily basis.

any advice would be very helpful.....

03-05-2013, 06:21 PM
Hi and welcome to the WHL family. I am sorry about you mother but I am glad it pushed you to start taking care of yourself. Lupus is a treatable, even if not curable, disease but we must always stay on top of it.

Please make yourself at home. I look forward to getting to know you

03-05-2013, 09:29 PM
Regarding Lyrica-- I was on Lyrica for a while, and it was terribly expensive. I ended up giving it up and trying another drug that is useful for some kinds of pain, called amitriptyline. It's an old tricyclic antidepressant that has been found to be effective at low doses for pain in many people. You might want to ask your doctor about that. It is quite cheap.

As an added bonus, amitriptyline is also quite good for sleep. Since I've been on it, I get great sleep at night.

Welcome to WHL, by the way. It's a good place here.

03-06-2013, 09:10 AM
thank you for the support and the advice.

I will ask my dr about amitriptyline. She has been very good at listening to my complaints and not just brushing it aside like the other dr.

03-06-2013, 04:40 PM
Hi there gizlby, and welcome to WHL. Sorry about your mom's passing. My wife & I have two kids we try to keep up with. We worry a bit about them developing ai stuff (both of us have issues), but be sure you don't blame yourself for things you can't control. It's (ai) in the genes of a lot of people, but not all of them get the disease. Scientists surmise that there might be a "trigger" that sets things off. So while you may pass a pre-disposition for auto-immune disease, it doesn't mean they'll get it. It's tough, but you want to try to teach them how to deal with the adversity, and to become their own advocates for their health, by doing that for yourself. Do you have the luxury of taking your spouse with you to your appointments? I try to schedule appointments when my wife can make it, since I'm so bad with my memory anymore, and forget half of what is said. She'll use her "smart" phone to take notes for me...

03-06-2013, 06:36 PM
I loved the ammitiptyline. I wish I could still take it but I was on it so long it became less effective and I ended up maxing out on the dose. It worked wonders for pain and sleep as well as my mood. I agree, talk to your doctor. Much less expensive and it does a world of good

03-06-2013, 08:03 PM
Welcome to WHL!

My condolences in the loss of your mother.

I'm sorry that you've gotten the run around in getting properly diagnosed and a decent rheumy. I, too, have developed sleeping issues over the past couple of years. I'm not sure if its because I stopped taking meds for Restless Leg Syndrome (their long half life made waking up difficult in the morning); if it's peri-menopause, or what? I occasionally take NyQuil or .5 Xanax if it's been a few nights with only 3-5 hours of sleep as I have to work and I can't think if I'm sleep deprived.

Thanks to those who suggested the amitryptiline. I'll research it and discuss with my doctor. Oh, did any of you experience weight gain from taking it?

03-06-2013, 09:13 PM
I've been on amitriptyline for months, and I haven't gained any weight (and I DID gain weight when I was on Lyrica).