View Full Version : New and Surprised

09-28-2008, 08:26 PM
Hello Everyone, I'm so relieved to find you all here! I'm 34 years old and newly diagnosed. Unlike some others, until this past Mother's Day when I was hospitalized for not having any Platelets, I never saw this coming. I had never heard of Lupus. I thought my ailments were part of my own unique experience of the human condition. And of course, that remains to be true.
I was firmly diagnosed 3 days ago with SLE, Rhuematoid Arthritis, and Sjourgn's Syndrome....(I can't spell any of this yet) and have a ton of tests still to be run. :shock:

09-29-2008, 01:19 AM
Hugs and welcome frekkuls

You must be feeling quite shell shocked. That's a lot to take in all at once. Take a deep breath and let it out slowly.

Have they talked to you about medications yet? There are some medications that work for both Lupus symptoms and rheumatoid arthritis. They take awhile to build up in your system before you notice any benefit.

Sounds like you have a good medical team behind you. Youíve been diagnosed. There are a lot of us struggling with our doctors to be taken seriously, no matter what our symptoms. Hopefully your team will continue to be on the ball.

I have arthritis, but there seems to be a debate as to which type of arthritis. Itís down to Osteo arthritis and Psoriac arthritis. I had never heard of the later.

Things seem to move very slowly for getting treatment. A lot of what Iím hearing is that there is nothing to be done or they just want to ďwatchĒ and see what happens.

Iím very thankful for this board. I truly think I would have lost my marbles if I didnít find the support and comfort of being able to vent and seek answers here. Iím sure the otherís well be along soon to welcome you.

Gingerbread Kat
09-29-2008, 07:14 AM
35 and newly diagnosised. I almost envy you. Since I've had Lupus for about 35 years. Way back then in the olden days when dinosaurs still roamed the earth....getting my diagnosis was ne of the worst periods of my life. I still can't think on the terrible things they did to me.

Welcome to the Wolf Clan. (LUPIS: latin for Wolf)
I like to think of it as The Wolf and it's 'puppies'. Try to keep them asleep and quiet. When I have a flare (which seems to be everyday now) I do everything I can to get that rowdy bunch back to behaving and asleep.

I am NOT Lupus.
Lupus doesn't define me.

But it's hard and The Wolf is getting stronger and stronger and I don't feel as if I have much more to give to keep it quiet.

Don't despair; 'Newly Diagnosised'.
The Wolf and I have co-exsisted for 35 years.
You're only 35 now so you should be good to go for another another 35! :wink:

Always remember:
Don't let the Wolf define who YOU are.
Some of us have blue eyes, or brown or green.
Some of us have Wolf-Eyes (lupus).
It's just another 'trait'. ]<--that I've been trying to brain wash myself into believing/)

Be Well~

09-29-2008, 07:41 AM
Hi and welcome to the forum. I have had Lupus for at least 45 years from what my Rheumatologist told me, but I did not get diagnosed until I was 36 after I had a bad bout of the chickenpox and my health took a serious nose dive. That is also when the Sjogrens decided to present itself as well. I started have Lupus symptoms at the age of 5, but for years the doctors would not take me seriously and would not believe me. It was terrible and that crap nearly costed me my life. The Lupus started affecting my heart and lungs in a big way. I am doing ok, but I do have a lot of flares and that stinks. It just goes along with the illness as there is no cure yet. I am glad that they diagnosed you and you can get the medications to get it under control. Keep posting ok.


Gingerbread Kat
09-29-2008, 07:44 AM
Isn't Arthritis fun? (not)
I have Osteo-arthritis in my back; where it got broken, a few years ago, when a horse flipped over and landed on me (still in the saddle).
The 2 broken places are ?crusting? over with arthritis.
My pelvis was shattered and my hips damaged so I am developing oesteo-arthritis in both hips.
I just haven't seemed to be able to 'snap back' after that accident. :( . I am always in such pain.

I also have oesteoporis; most likely caused from prednisone.
[list:390bf16ea4]Fosmax, given to me for my oesteoporis, has built up in my jaws, a little known 'side-effect'. I can barely chew anymore with that and the sjordens.
~Some of the medicines are worse than the Lupus~.
[list:390bf16ea4]Hchloquine was helping me; but it's begun to affect my eyes so ....
I suppose this should be in another thread; excuse me. I just joined yesterday.
But I am so glad I found this board and to know, I am not alone.
.i'm lonely.

Welcome, frekkuls!
Does this mean we are "family"? :D

09-29-2008, 08:48 AM
Hey Kathleen

We're not that formal here. :) Nice family atmospher. Sorry to hear you are so full of pain.

I have arthritis in my feet, knees, ribs, hands and a bit in my jaw. The plaquenil I'm taking really seems to help alot. Hope it continues to do so.

09-29-2008, 09:24 AM
It's so cool to wake up in the morning to find replies waiting. This is my first real message board experience too. I do seem to have a great medical support team......although my family from Wisconsin is insisting that I move home immediately because supposidly New Mexico has the worst health care in the country. I'm not finding that to be true.

So far I'm taking Prednisone, Imuran, Plaquenil, and Evoxac.
I need to spend more time exploring the board...but can anyone tell me exactly what having a "flare" means? Is that when something new goes wrong......or is it for when the same stuff is going wrong?

I get so confused!!!

09-29-2008, 09:33 AM

Flare...both. Old and new symptoms. Lasting for a day, a week, month, year or for some by the hour. Know remission doesn't mean symptom free, nor prescription free.

Learning to recognize that a flare is coming can help you take steps to cope with it. Just before a flare, many people with lupus:

* feel very tired
* have pain
* have a rash
* have a fever
* have stomach discomfort
* have headaches
* feel dizziness

Tips For Dealing With A Lupus Flare

* Learn to recognize that a flare is coming.
* Talk with your doctor.
* Try to set realistic goals and priorities.
* Limit the time you spend in the sun.
* Maintain a healthy diet.
* Develop coping skills to help limit stress.
* Get enough rest and quiet.
* Moderately exercise when possible.
* Develop a support system by surrounding yourself with people you trust and feel comfortable with (family, friends, etc.)

With any new symptoms, make an appointment with your doctor...

Be well..

09-29-2008, 09:39 AM
But that means I'm having flares every other day pretty much!!! Yesterday my joints were excruciating......and right now I feel great.

Also....the sun sensitivity.....I've been scanning the topics, is there a thread for Vampires on here? I've been extremely sensitive to the sun my whole life, but I'm a fair skinned redhead....so it always made sense, but now I'm so sensitive to light that I've really begun to live like a vampire. Is this normal??

09-29-2008, 10:06 AM
Is it normal living like a vampire or sun sensitivity with Lupus?


Many of us are sun sensitive in varying degree of it, from it... Me, I get headaches, activates my malar, nausea, rashes..joint and muscle pain from being in the sun for just a few minutes.

Days it is nil to severe, so as part of my norm I cover, cover, cover as to not risk a flare and many times close the blinds in the home. Know I am not always risk free. I forget the sunglasses while driving, chat up outside too long...and I do feel the flare seeping in ready to take me for a tormented ride. Many times I wear sunglasses while on the PC too, activates my malar and leaves me with blood shot eyes. I have Sjogrens too.

Some with photosensitive can be extreme, covered in denim, veils and gloves and mild and cover with just sunscreen....

Follow the link to a spot on this board... http://www.wehavelupus.com/message-board-forum/viewtopic.php?t=4483

Regarding the flares, for some us, joint pain is our norm. Headaches are our norm when not in a flare. You will find yours....hope it is the really norm we all yearn for. Completely free.

Keep looking for ways to control your symptoms, flares... through healthy eats, exercise, managing stress, medication...take care of you.

Be well...