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Old 26.04.2011, 17:06
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Mother diagnosed with Lupus.

It's kinda weird for me, sort of an "ah ha" or "shoulda known" or something but... she has had all sorts of auto-immune difficulties for years, how was this "missed"?

My mother was diagnosed with Hashimoto's Thyroiditis when I was quite young, around about the time I was in kindergarten. She has "always" had sensitivity to the sun, she would get hives every time she got a sunburn and always "just" said she was allergic. She also has rheumatoid arthritis, was diagnosed with clinical depression and (like me) gets sick with every germ that comes along.

So, I really wonder, how was this missed? My best guess is that so many of the symptoms are also present in her other auto-immune diseases.

I was told a couple weeks ago that her doctors were looking into this possible diagnosis but only got news of the confirmation on Easter when I spoke with her. I've been busily searching for some info since then, what it means for her, what additional factors that need to be considered regarding her health... some of it was quite scary!

Really, it's starting to feel a lot like "one thing after another" and I keep thinking to myself, "wtf am I doing over here?!? I should be THERE!!!"


Anyhow, other than venting / freaking out, does anyone have advice on where to find reliable information on the disease and perhaps also things I may be able do from here to help her out?
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Old 26.04.2011, 17:25
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Re: Mother diagnosed with Lupus.

Does she have skin lupus or systemic lupus? Because what I say relates to systemic lupus erythematosus.
As you probably know from my "I'm so tired today" posts on Facebook, I have lupus and Hashimoto's and judging from all the testing and the talking they did, it's not an easy one to diagnose. I guess you've seen the symptoms yourself - tiredness, achy joints, no strength. For me, my memory got very bad after having had a photographic one all my life, which was a terrible blow, especially as nobody takes my complaints regarding this very seriously. I did a neurological test and they say I'm "within normal range", which is not much use if you've been "outstanding" all your life. Headaches, I get a lot of those now too.

All in all, you sometimes have really random symptoms and the doctors told me that lupus is also called "the great imitator". What I find helps me best (as it would any human being, apart from the medical bit) is:
  • at least eight hours sleep per night
  • regular but gentle exercise (this is hard for me because I prefer vigorous exertion to a gentle walk), aim for 3 times a week
  • always, ALWAYS wear high factor sun cream and avoid too much sun, it seems to trigger the tiredness as well as the rashes
  • try and reduce stressful situations (another hard one)
  • lots of nutrients in my diet
  • actually taking the meds they give you (may sound trivial but I am guilty of "forgetting" every now and then)
  • reducing alcohol to very minimal consumption, if I drink more than two to three glasses of wine per week, I get very tired and headache-y
  • drink loads of water - lupus can negatively affect your kidneys so better keep the old plumbing in tip top shape
But it's not all doom and gloom - with modern medicine AND a bit of old-school common sense, it can be managed. I am sicker than I should be because I'm not a perfect patient and my living situation is not ideal - this, however, will change soon and then I will hopefully only have one or two days in bed per month as opposed to every week. A friend of mine is managing an even more unpleasant disease marvellously well thanks to a great diet and exercise, he is a total inspiration to me and proves that you are not helpless even if you have something seriously wrong with your health.
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Old 26.04.2011, 18:03
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Re: Mother diagnosed with Lupus.

For a bit of encouragement, I have a friend with Lupus. She's just given birth to a lovely healthy son - which her and her husband never expected to happen.
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Old 26.04.2011, 19:31
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Re: Mother diagnosed with Lupus.

It's not lupus, it's never lupus
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Old 26.04.2011, 19:39
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Re: Mother diagnosed with Lupus.

Sorry to hear this, but try not to worry too much. My mother also has Lupus. She has had it diagnosed for some years now. I looked into it quite a lot when she first told me she had it as I didn't know anything about it.

It seems to me that you need to know more about the details, Lupus can affect people in many different ways. So far my mother has been quite lucky. Her lupus affects her head - she is going bald and the hotter she gets and the more time she spends in the sun, the worse it gets. Apparently it is very uncomfortable for her. But from what I gather, she is quite fortunate.

She now spends little time outdoors, has given up tennis and golf, which she loved, and has stopped gardening and all those kind of things. She has done such a good job of it that she has been able to stop taking the medication she was on. This is great as one of the possible side effects was blindness.

Honestly, I don't think there is much you can do. I always show I am concerned by asking how she is, following up with her doctor appts etc. She knows I care and she appreciates this.

But you need to find out how it is affecting her specifically, as the range is huge.
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Old 26.04.2011, 19:55
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Re: Mother diagnosed with Lupus.

A recent article in Nature on Lupus here. Rushing back won't solve anything. It's a marathon, not a sprint.
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Old 26.04.2011, 20:02
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Re: Mother diagnosed with Lupus.

I second UM's "don't rush back" - at first I was just a bit stunned but it didn't really hit home until a few months later, when I realised this is a situation that will not really improve. Also, people grow sort of "bored" of your plight, when you are sick you get better at some point, no?
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Old 26.04.2011, 20:17
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Dear Peg, you must feel so helpless being so far away. I found an American Lupus foundation at www.lupus.org. Maybe there's a local chapter your mother could contact? Courage, and good luck.
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Old 26.04.2011, 20:34
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Re: Mother diagnosed with Lupus.

Another thing I was told was to try and get to a more normal weight because in some people, being overweight can cause the body to produce C-reactive protein, aka, the stuff they look for to see if there is infection. Having an elevated CRP rate will contribute to the feeling of tiredness.

Buuuut - easier said than done. A bit of a vicious circle: you feel to tired to exercise, then you feel tired BECAUSE you don't get any exercise, then you feel frustrated, then you cookie-self-medicate. Not easy at all.
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Old 26.04.2011, 20:47
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Re: Mother diagnosed with Lupus.

Sorry to hear about your troubles Peg, and your mum's of course. It is hard to be away from family when things like this happen.
I do agree with Kittster though as there are two types of lupus, discoid lupus or a "skin only" type of lupus which is really treatable and there is systemic lupus erythematosus which is a "whole body" form and is autoimmune.
Please feel free to contact me for anything, my mom has discoid lupus and she regularly goes to the dermatologist for a check up (high risk of melanoma in the family to top things off) and she does not expose to the sun without a 50 SPF protector.
*hugs*
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Old 27.04.2011, 09:37
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Re: Mother diagnosed with Lupus.

Thanks for the replies everyone ♥

I have some thoughts, a few answers and a few more questions but have been "running" a bit since posting that yesterday (hubby / in-law stuff)... so I wanted to make sure I said thanks before running off again today.
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Old 27.04.2011, 22:12
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Re: Mother diagnosed with Lupus.

Okay, so.

My mother has systemic lupus or Lupus SLE she says. As I look over info pages, a lot of it clicks with "no wonder..."

The hard part is knowing that some of the things she's been through, some of the symptoms that maybe could have been treated as part of being lupus and instead were treated individually... maybe the past 10yrs could have been better - for both of us.

My mother has had stomach surgery to "repair" a hiatal (sp?) hernia which had developed into Barret's Esophagus - so she's not been eating well (particularly if left to her own devices because she doesn't always feel like bothering with it - which has some explanation now, eh?) as it hurt her for a loooong time. She "needs" someone to cook for her and eat with her or else she doesn't eat right. (This is apparently not happening now, with my sis there )

Exercise was never her strong suit anyhow... but knowing that what's wrong is more than "simply" the thyroid (which has been mostly under control for 30+ yrs) explains so much. Moods and energy level is a big part that plays in my memory, chalked up to depression, especially in the 10+ years since my dad left, but what if it had been lupus related all along, could it have been treated differently? Would it have made a difference?
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Old 28.04.2011, 00:43
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Re: Mother diagnosed with Lupus.

I can totally understand why doctors would miss a Lupus diagnosis. Have you ever looked at the criteria for diagnosing Lupus? It is extremely vague. The only scientific part of a diagnosis is a +ANA and you can have that from other AI issues. Positive ANA alone isn't enough to diagnos Lupus. All of the other symptoms are very difficult to point definitively to Lupus. Doctors generally don't like to diagnose people, they prefer to hustle them in and out and give them an OK. It's much easier to tell someone they are healthy and to come back next year than it is to deal with a patient with a chronic condition. I hope she is seeing a good Rheumotologist, that will make all of the difference in the world. It's also good to get more than one opinion.

I hope she finds a long-term remission without the use of steroids or immunosupressants (as these medications recently got a warning from the FDA about higher incidence of cancer than was previously reported). Hope I don't scare you. Always do your own research.

Goodluck to you both.

This looks like a good site:
http://www.lupus.org/newsite/index.html
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