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Someone with lupus here?

May 11, 2018 9:56 PM

I'm 26, the symptoms started almost 3 years ago but I was diagnosed in January, at first I took it well, too well maybe but now I am at a point of quite high depression
Don't know what to do, I want nothing...

May 12, 2018 7:46 PM

Do you know what your anti Nuclear Antibody numbers are?

May 13, 2018 11:57 PM

1:40, but doctors asked for more exams to make sure

May 26, 2018 4:30 PM

Hi SanRod, I am sorry to hear about your diagnosis. I was diagnosed in 1999. I understand the depression and trying to navigate through all the information and what works for you. I was on prednisone for a long time when I first was diagnosed, but now I am on Neurontin and plaquenil to suppress my immune system. Its a difficult disease to treat at times, but it do go into remission. So I hope your flare don't last too long. But we are here for you if you ever need to vent. All I can suggest is try taking iodine. Our adrenal glands are damaged which causes our immune system to go out of wack. The iodine supports it and also help with the thyroid. Light aerobics and walking when you can help to ease some of the pain. These have made things tolerable for me. Hope this helps you. Take care. Will keep you in prayer.

May 27, 2018 7:22 AM

I was also diagnosed with Lupus and RA over 10 yrs ago. Please say something if you feel more is wrong and insist on a Neurological consult. My autoimmune disease covered my true diagnosis of MS. I said something over and over even after my hips were replaced. Just please do some research. Since my last hospital stay I have drowned myself in knowledge. Everything the doctors couldn't put together makes sense now.

May 29, 2018 8:56 AM

Same here, i was also diagnosed but the symptoms were there a few years ago. I also have lupus and all my joints hurt like hell.

Jun 20, 2018 11:24 PM

Thank you all! This is hard, all the pain and other symptoms is too much to deal with, I get sick like every two weeks of any thing you can imagine, that make it worst; I try to navigate and learn all I can about lupus, now I am on Imuran, prednisolone and plaquenil, I try to do some exercise but the pain don't let me, hurts like hell.
Best wishes to everyone 💜 blessings!!

Jul 10, 2018 7:33 AM

Hi SanRod, I hope you are feeling at least a little bit better aince your last post. Please know you are not the only one out there with Lupus. Also, I’ve been told that depression, aside from accompaning the constant, chronic pain suferers, is a very real and often present illness that goes hand in hand with Lupus. So, if you can, find a mental health therapist. I suffered needlessly for 2 years alone and only now that I have this help I can tell you how helpfull it has been. I’ve been diagnosed 4 years ago and they started me on Plaquenil (which I still take), Prednisone (I had to discontinue taking it because I became allergic) and Imuran. We discontinued Imuran last year as it stopped working for me. Cellcept, so far, has worked like a dream. No swollen or horribly painful joints. Although, I haven’t had any antibiotics yet and that’s what usually triggers my flare up so I’ll have to wait and see for that to happen for the real test.
Chin up, you are not alone-if you ever need somebody to talk to just pm me. I know how overwhelming this diagnosis can be. Take the best care of yourself that you can, and just take one day at the time, and somehow you’ll get there. There are hands out there to help you if you need them. All the best.

Jul 10, 2018 1:09 PM

ATanyaR thank you! Is hard and so depressing but I try deal with the best I can, I have Cushing's syndrome 'cause of the steroids so my face is unrecognizable and is so traumatic 😢
Thanks, if I need someone to talk to, I will no hesitate to write to you!

Hope you feeling good, best wishes!

Jul 11, 2018 11:03 AM

SanRod—I feel your pain. I was diagnosed in 1996 and was put on 40mg of Prednisone. I had gained so much weight in my face and stomach that it made people stare and I was even asked if I was pregnant. At that particular time I cried because of what the steroids were doing to my body and didn’t want to be out in public. I cried a lot cause when I looked in the mirror I didn’t see me. But I can tell you this; us lupies have to jump a lot of high hurdles and come across a lot of bumps in the road in our journeys and it makes us want to give up but we have to keep fighting this disease and show it who’s boss!! 😊

Jul 12, 2018 9:46 AM

KR918 that's exactly the way I feel!! I had a crisis and ended up in the hospital 6 days, with 360 and 500 mg of Prednisone for 4 days 'cause my platelets kept going down, I was dying, so the insurer brought in a rheumatologist and he ordered the exams and diagnosed me with lupus.
I don't like to look at me in the mirror 😢 and didn't want to be out neither, but my family don't understand how depressing it can be everything, living with pain is not easy and sometimes I just want to give up and stay in bed crying like forever ...

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