Dx'd 5 days ago

[halfback55]

Hi my name is Tawnya.... I was just dx'd with SLE. They have been testing crazily because of my symtoms, I switched doctors a kabillion because they kept telling me that all of my symptoms and pain was a manifestation of anxiety and depression. I am only 19 and they said it was highly unlikely it was auto immune. FINALLY I found a rheum. that believed me and started running new tests.

4 months ago I had testing my ANA was 1:320 and blood counts were normal, I had a borderline EKG and very bad chest tightness and body pain (all over)

A week ago my neurologist retested me... my ANA is 1:640 high speckled appearence??? wbc and rbc are low (anemic) I have proteins in my urine (suggests kidney problems) I have lost 12 pounds in the last 5 weeks, I have no appetite, I am incredibly fatigued. I get bad chest and side pains when I excersize, I used to be able to play soccer, go to college and work overtime... This last quarter I was so fatigued and in pain that I dropped my classes halfway through the quarter. I can barely walk up the stairs without being exhausted. My hair is falling out by the handfuls, I get rashes when I am in the sun. I get sores on my tongue, My toes and fingers turn purple in the cold, and have a lacey pattern all the time, frequently I run a low fever (99.5-99.9) My muscles a sore expecially in my upper arms and thighs. In some places I feel like there is going to be a bruise, but nothing shows up.

I hate the fact that I have no one to talk to about this, and if anyone has time, I would like to talk, figure out what meds work and which dont, I get sick pretty often now, is Vit. C ok? My doc. started me on plaquenil but says that it takes awhile to work. how is pain managed, as of now I really have nothing, I ask and they give me vicodin, but that makes me so drowsy, I can't drive or work on it... any ideas? ok I will stop for now, let me know!

-Tawnya

[Mariposa]

<span style="color:#993399"> style_emoticons/<#EMO_DIR#>/hugbetter.gif Hi TAWNYA,

Welcome to our little corner in the world style_emoticons/<#EMO_DIR#>/cool.gif You're in the right place and everyone here is very helpful and friendly.

I'm sorry you have exactly what I have style_emoticons/<#EMO_DIR#>/worried.gif so I sympathize with your symptoms and your condition. There are a few more ladies here that have the same symptoms and I'm sure you'll find answers to your questions like I did.

About, Plaquenil well, it doesn't work over night, but it does work very well after approximately 3 months. Don't give up TAWNYA, get plenty of rest and take your meds plus eat even if you're not hungry. At least small healthy snacks throughout the day. That way you won't get a stomach ache.

Another thing, try to stay away from sun light and flourescent lights because they are bad for us. style_emoticons/<#EMO_DIR#>/cool.gif So, wear sunscreen, hat, sunglasses, and long sleeve shirts and pants.

I was diagnose last August with SLE, SS and Osteoporosis.
My meds are Plaquenil 600mg, Fosamax, Follic Acid, Caltratre, and aspirin.

Right now, I'm still trying to get used to my new life style. I also go to the university and I try to keep my stress level down, even though, sometimes is kinda difficult style_emoticons/<#EMO_DIR#>/ermm.gif .

Also, I have a hubby and a child so I'm pretty a busy Lupie chick... on slow motion style_emoticons/<#EMO_DIR#>/laugh.gif


style_emoticons/<#EMO_DIR#>/foryou.gif I'm pleased to meet you and I'm sending you butterfly hugs</span>

[halfback55]

Thank you for the warm welcome, It is nice to have so many people to talk to that understand. style_emoticons/<#EMO_DIR#>/shakehands.gif

I know what you mean about buzy... I work FT and go to college FT, except for this quarter and next quarter, I decided to take a break until my health is in line.

Something that has been bothering me is having shildren. My doctor said it will be very difficult and that I should start young... My boyfriend and I have been together for 4 and a half years; however, we decided to wait until we were out of school to get married and start having a family. I am torn on whether I should bring up to him about getting married in the next year or two. I dont know... style_emoticons/<#EMO_DIR#>/scaredy.gif

I am going to the Lupus Foundation today near my home, hopefully they will add to my insight! style_emoticons/<#EMO_DIR#>/biggrin.gif

Again, thank you for welcoming me! style_emoticons/<#EMO_DIR#>/foryou.gif

- Tawnya

[Mariposa]

<span style="color:#CC6600">style_emoticons/<#EMO_DIR#>/wavey.gif Hello again Tawnya,

How are you?
My advice is to go ahead and a long break because your health comes 1st. So, enjoy reading some good books and get some rest. style_emoticons/<#EMO_DIR#>/asleep.gif You will not regret it. style_emoticons/<#EMO_DIR#>/ok.gif

About marriage, I wouldn't rush to the altar because of one doctor's opinion. Continue to enjoy your relationship with your boyfriend and finish with your school like you planned. Because once you start a family it becomes a little more difficult to juggle college and family at the same time. I'm doing that right now and my son whose eight-years old can't wait for me to finish.

About your health, Why did that doctor say that to you in the 1st place ? style_emoticons/<#EMO_DIR#>/unsure.gif
I would seek a 2nd opinion about this issue.

Tawnya, I hope your Lupus Foundation meeting went well.
I hope you're doing well and take care style_emoticons/<#EMO_DIR#>/flowers.gif </span>

[LuckyMisfit]

Welcome,

I had to switch doctors like a bazillion times. Nothing more crazy then a needle comming at my face and a doctor saying "ok just relax" haha not a chance! Rest is definately a must and long bubble baths but dont let it hold you back from what you really want to do. When theres a will theres a way.

*acey

P.S.

Darvaset doesn't make me drowsy. and it sometimes helps but not with cronic pain like some days can be.

[jodipat]

Hi,
You probably think I am a bit of an olddie (28) to be replying, but I still feel like I am 16 in my head. I am currently pregnant ond take plaquinil and asprin as well as folic acid and iron as am anaemic.

I can understand totally how you feel though. Sorry to hear you seem to be going through the mill lately. When I am in bad pain - legs arms chest etc my rheumy gives me a steroid jab which really helps.

I would not rush in to marriage etc just yet - this would probably make your symptons worse with stress about wedding moving etc. I know it is easier said than done but youreally need some much needed "me" time. It is an awful lot to take in having Lupus - and sometimes even though I have been diagnosed for a number of years it doesn't quite hit home that I can't do some things that great now. Having said that don't beat yourself up to much about having this "terrible" illness. With the correct medication, support and care you can live a normal happy life with little or no symptons. The main thing is you are diagnosed now so things should be better now they know what they are dealing with.

No one (apart from other luppies) will ever understand how tired etc you are and things that do affect you. My mom still ocassionally says I am lazy - which I can be but it can also be my lupus telling me to take it easy for a while. I think only you can determine what you can and can't achieve - although it may sometimes be slower than the "normal" people it will give you a great reward knowing you got there.

Always take a family member with you to the appointments - as you forget so much and they get a little better understanding of your illness.

I hope you are getting well again now, and have a good rest.

Keep well

Jodi x