New to the world of Lupus: After a positive test, I... - LUPUS UK

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New to the world of Lupus

wvwriter007USA profile image
6 Replies

After a positive test, I am awaiting more and praying it was wrong as physicians have already conferred and diagnosed me with Fibromyalgia, Psorasis, Raynauds, Extreme Sun sensitivity and heat sensitivity, High Blodd Pressure (controlled with meds), slightly high cholesterol (not too bad)Occular Migraines, Menopause issues,Lymphedema/Lipedema in my left leg and spreading and old Arthur is hitting me in some area.....any thoughts on what I can expect and just for the record I really didn't need and sure didn't want another affliction and am trusting God to heal me completely

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wvwriter007USA profile image
wvwriter007USA
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6 Replies
janiceray profile image
janiceray

Welcome to the world of Lupus and its partners (ie Rynauds and all the above)

You have found this site that you will be able to Share your pain thoughts with other people just like you.

I'm trusting also that God will take the cup of pain away.But if i have to carry

this cup,i do it to his Glory.

Love & Sunshine

Jan

Binkey profile image
Binkey

I wish you well and good luck.It is a difficult time for you but,hopefully you will feel better soon.

Lorelei profile image
Lorelei

Hi, WV!

I was diagnosed with SLE when I was 27. I had just gone through 3 pregnancies in 5 years. I was told that my lupus had started at a time that was

"typical". I have read that it is most likely for a woman to start having the symptoms of lupus during "the childbearing years". My very first symptom was thrombocytopenia or low platelet count during the third trimester of my first pregnency which was a twin pregnancy. ( Platelet count dropped from 220,000 to 30,000 in 2 days. Twins had to be delivered right away by emergency C-section.) I was told that lupus is related to high estrogen levels. My estrogen level was at its highest of my lifetime during that multiple pregnancy. I have been told that, when I reach menopause, my symptoms may get better. So, while I'm not looking forward to menopause, I am looking forward to the possibility that my symptoms of lupus may subside a bit.

The reason I've told you all this is that I think it is rather unusual for lupus to develop at this stage in your life based on your saying that you have" menopause issues" now. Menopause usually starts when our estrogen levels are relatively low. Since the timing of onset of your lupus is not what is typically seen, I would ask some questions about that. It may be a reason to have hope that the diagnosis is wrong.

Even if the physician is correct and you do have lupus, the disease varies in severity a lot from person to person. I've had it for 25 years but my lupus has been relatively mild. My symptoms are limited to fatigue, fever, musculosketal pain, pleuresy, mouth and skin issues. I am fortunate because I have never had internal organ involvement.

So ask your doctor more questions about the diagnosis. Ask if, since you developed lupus when your estrogen level is low, does that mean that your lupus will be relatively mild, since lupus is an estrogen-dependent disease. You could even get a second opinion.

I will be hoping for the best for you!...and praying for you as well. I am certain that prayers, mine and others', have helped me. Prayers certainly can do no harm!

Take good care of yourself, WV!

lindabrown profile image
lindabrown in reply toLorelei

Hi I would like to say that its not just typical at your age. It is also typical at the time of the menopause. My rheumatologist told me that it can be diagnosed at the 3 events in womens hormonal phases-puberty, pregnancy and menopause. It is the mother of all illness!

wvwriter007USA profile image
wvwriter007USA

Thanks so very much, everyone. I will continuing believing in the power of prayer and God, intelligence doesn't just happen. I look around and see so much to be thankful for, in spite of my burdens and trials and I pray for a longer life each day and a healthier life and I claim it. Thanks again. I wasn't sure what comes with it, the doctor acted as if I would know. I was curious as to the best case scenarios, average scenarios and worst case scenarios. I am just grateful, regardless and praying to get healthier and remain grateful. My prayers for great healings are with each and every one of you!

ebril profile image
ebril

I was diagnosed with SLE this time last year even though I may have had it for years, the worst part is the not knowing, not knowing if today, tomorrow or the next day is going to be a good or bad day. I never heard of Lupus before I was diagnosed with it and reading things didnt make it any easier. I take one day at a time because that is all i can plan right now. Do I let it get me down, yes, sometimes but I have it and It will never go away so I have to learn to live with it, the best I can and as the old saying goes.............I can moan and winge about it but no one listens.

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