View Full Version : Newbie in need of help! Understanding lupus &some terms

06-23-2007, 07:32 PM
I realize that the way we are each affected by lupus is different, but I've been reading over some posts, and see that there are some things that are VERY different from my illness, and then terms that are used, that I'm not familiar with.

For example- What is a "Lupus Migraine" or "occular migraine"?

And, as far as flares, is anyone else NEVER free of symptoms? I DO have periods where they're significantly worse- where I feel like I've been hit by a truck, and feel like I'm fevered "on the inside"(if that makes any sense)- but those periods generally last about 3-5 days, and I generally get about much time in between, before it comes again.

My symptoms have come on aggresively, over the past 10 mos.- just one new thing after the other.

I'm REALLY hoping that when I go to the Dr. Monday, I'll get on some steroids & immunosupressant therapy or SOMETHING that will help me have more good days & less yucky days. It seems as if I can literally feel my body breaking down, at a much too rapid pace(especially for only 27 years old).

I was also diagnosed with severe narcolepsy, and have suffered from it for more than a decade. If not medicated w/ the max. legal dose of amphetamines daily, I sleep 23-23.5 hours a day. WITH them, I still have days where I only get 3-4 hours of "awake time" in a day.

Is there something else that anyone might know, in regards to that I'm ALWAYS sick, or that my symptoms have come on so fast, advancing in severity so quickly?

Sorry~ but I'm just learnin' & need you guys to set me straight :wink:

06-24-2007, 10:54 AM
Hi Gradengail :lol:
You are correct in your assessment that Lupus affects each of us differently and that it even changes within us. Some of us have symptoms that gradually appear and some of us, like you, have symptoms that seem to pile on top of one another in a short period of time. For me, as an example, I went to my doctor with the butterfly rash. In a matter of approximately six months, I was almost completely bedridden, I had lost all of my hair, I had open lesions all over my face, my feet, my hands and huge ulcers in my mouth. My joints ached so much that I could barely walk and my muscles burned, hurt and were weak on a constant basis and the fatigue...well, hit by a truck is an appropriate simile. Even through all of this, I would not get a definate Lupus diagnosis for another six months. By that time, I was told that my kidney and my heart had been affected and that I might not live (both of those predictions turned out to be false, because here I am some 20 years later and with no damage to either organ).
Yes, there are some who acheive remission and manage to be virtually free of symptoms or are able to manage their mild symptoms without a lot of medication. But for most of us, we are always symptomatic in varying degrees and a flare-up means that those symptoms worsen or that new symptoms appear.
With reference to "Lupus Migraines", On these forums are a lot of discussions about Lupus Migraines etc. Here are just a few:

In Lupus Erythematosis Symptoms -
By ILoveHistory on 6/15/07
By Gerri on 1/21/07
By Kimb on 4/12/07
By Vtredsoxfan on 12/16/06
By Bama on 8/23/06

In Lauri's Lounge-
by Psalm 56 3 on 10/23/06

Of course, there are many other discussions. If, after reading these, you still have questions, I will be more than happy to find answers for you and to help you understand!

I wish you the very best.
Peace and Blessings

06-24-2007, 05:55 PM
What a blessing you are! THANK YOU SO MUCH!!!

My Dr. is still trying to find the extent of my autoimmunity. The symptoms started piling on later last year, but I wouldn't go to the Dr. for several months & when I finally did, while I was able to get some lab results from his RN, I couldn't get him to follow up with me to find out what I sould do next. I felt so invalidated, that I wouldn't go back until last month.

My "flares" consume equal(if not more) time that my remissions- & remission is sort of a joke, because I'm never 100%. Best is about 60% of what I was before =(

My joints & muscles are never pain free & I still get nauseating headaches every evening- as well as variable degrees of suffering from other symptoms.

I was hoping to find the support in areas where I'm lacking here. I was very successful before I became ill last year- even with narcolepsy, I pushed myself, & somehow managed.

Now that I'm not as capable, my father acts as if I've just decided to not apply myself anymore. That's very frustrating, because I extend myself every bit as much as I have in the past- only my 110% now, is FAR less than my 110% before.

As a person who has relied on success & ability to overcome and over achieve, as my investment in my own self worth, it's pretty much a lost cause- Trying to overcome a hurdle that's unsurmountable. I HAVE finally realized, though, that it is not I that needs to keep desparately trying to get over that hurdle, it is HE, that needs to lower it a bit for me.

I'm sure that symptoms are probably aggravate by stress- & I've had my fair share. Not to consume you w/ a drawn out sob story- when I talked over a little bit about my illness w/ my ex-husband, just after Christmas, he hid my 3 little girls from me(now 5, 8 & 10). I haven't seen or heard from them in months. They were my existance- we were as close as a bunch'a girls could be.

I thought surely, when he refused to tell me where they were, I could just go to law enforcement. Nope- Had to hire a high priced attorney & have been to struggling to make $thousands on line, while I wait to be denied disability- & try to eat every once in awhile.

Things seemed to be going in the right direction- My attorney requested the courts hold in contempt for violating the order set forth by them, last week, and then- looking at the Chancery Court docket online(I check daily), I saw that he was granted primary custody & I could file a motion through the courts, to request an order for some visitation.

I've always wanted what's in the best interest of my girls, & have ALWAYS told them that if they wanted to live w/ their dad, I'd be fine with it- but I've also found that they're many times being held where they've been molested & grossly abused in the past.

I FEEL LIKE I'LL EXPLODE! I hardly have time to worry about my illness, because I spend so much energy wondering how in the world this can possibly be- and THEN, how the courts can decide that this is what is fair & just? For 3 little girls to stay in a home where they've been abused, when they have a mother that is desparate to have them home, who is not negligent, but EXTREMELY involved in trying to develop them into happy & healthy adults, but yet has been denied them for half a year of their precious lives.

Whew! I tried to keep it as short as possible, but I guess I stay so focused on just trying to put one foot in front of the other sometimes- well, as they say, "When it rains, it pours."

06-25-2007, 08:36 AM
Custody issues are so baffling to me because, as you said, sometimes I cannot fathom how these judges make the decisions that they make. Why is it that the children are rarely given the opportunity to express their wants and desires. Why you cannot know what was the basis for their decision and now, you have to file an appeal to that decision. I will not pretend to try to understand all of those legal issues. But, I can certainly understand the immense amount of stress this has caused you and can tell you that the stress could very well be the main reason why you are unable to experience any more than 60% of relief from your symptoms.
Here are some articles about stress and how it affects Lupus:

These are just a few of the many, many articles concerning how stress can exacerbate and affect Lupus.
With reference to you father, it sounds as if he is in need of education about the disease, how it changes, what flares are and how they, also, can change. Here are some books that might help him to understand this disease so that he can better understand and help you!

The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace

Systemic Lupus Erythematosus, Fourth Edition
from: Academic Press
May 12, 2004

Lupus Q + A (Revised Edition)
by: Robert G. Lahita

Living with Lupus: The Complete Guide, Second Edition
by: Sheldon Paul Blau, Dodi Schultz
September 07, 2004

I do hope that you are able to alleviate some of your stressful situations. In the meantime, we are always here to help you in any way that we can.

Peace and Blessings