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Does anyone have Lupus?πŸ’•

Aug 23, 2017 4:22 PM

Hi everyone I have chronic fautige syndrome and fibro but I'm wondering wether I could have lupus, I have lots of the symptoms so I'm getting a doctors appointments to see what they say but I was wondering wether anyone on here has it that I could chat to? Thanks in advance πŸ˜˜πŸ’•

Aug 23, 2017 7:52 PM

I have lupus and SjΓΆgren's syndrome, I just saw my new Rhuematologist yesterday. And I showed her the pic of my face with the butterfly rash. And I showed her my scalp and how I have scaling scalp. But before her I only saw a Rhuematologist one time and she said I just had SjΓΆgren's syndrome and fibromyalgia and that even though my test said I had lupus she didn't want to diagnose me with it just yet that was January of 2016. So my new Rhuematologist ordered blood work to see where my levels are because when she examined me and the pic of my face with the butterfly rash, she believes I have lupus.

Aug 23, 2017 7:55 PM

@Paindlady Thank you, That's wired that they didn't want to diagnose you even though it showed in your blood.

I fit a lot of the symptoms but I only get a mild rash on my face when I'm in a flair. I'm going to the doctors anyway tomorrow so I'm going to she what they say.

Aug 23, 2017 8:00 PM

@PainedLady I tried messaging you but your using a old version of the app. If you don't mind me asking what are your main symptoms?

Aug 23, 2017 8:01 PM

No sweetie I don't even know what that is . But sending prayers your way πŸ€—πŸ€— . Good Luck. I hope you dont have lupus.
I'm always a Pm away πŸ’•πŸ’•πŸ’•πŸ’•

Aug 23, 2017 8:07 PM

@Westerngirl Thank you, I will keep you updated πŸ˜ŠπŸ’•

Aug 23, 2017 8:08 PM

@LittleLola I'm sorry that I'm on the old app. I'm using my phone to communicate with all of you guys. But my Symptoms are butterfly rash when I'm in a flare and very very fatigued everyday. All my joints hurt and my digestive system is all out of whack. I'm anemic and my vitamin D levels are always very low. I have had blood in my urine and and I get low grade fevers too. I'm praying you don't have it. Hugs to you πŸ’œ

Aug 23, 2017 8:13 PM

Don't worry about it I was just letting you knowπŸ’• I'm really hoping I don't have it too but I have extreme fautige and joint pain and a lot of the other symptoms. But it could just be fibro? I will let you know what the results are 😘

Aug 23, 2017 9:47 PM

I was diagnosed with Lupus 14 years ago and just recently they have added a diagnoses of Fibromyalgia. I'm having added pain from my new diagnoses but am also having a Lupus flare. So much fun. Working on it. One day at a time. Not letting it get me down. Doing my exercises and as much activity as I can without overdoing it.

Aug 23, 2017 9:53 PM

@Jaqied Sorry to hear that, I'm thinking I might have it as I have a lot of the symptoms so I'm asking to be refferd for the tests, if you don't mind me asking what are the main symptoms you get? πŸ’•

Aug 23, 2017 10:13 PM

When I was diagnosed with Lupus my symptoms were joint pain (mainly in my hips and legs), pain radiating across my back, kidney trouble, extreme fatigue (would go to work, come home, go to bed, my parents would call on the phone for me to go to their house a few blocks away for supper, after supper go back home and back to bed, sleep until the next morning and start all over again. Then I started getting sicker. Coming down with chest infections. I would work 2 days and be sick for a week, get better and the cycle would start again only next time I'd be sicker. They did tons of blood tests and finally found out it was Lupus. They put me on Prednisone. Sent me to a rheumatologist. A little over a year later I was talking to my GP about my rheumatologist being upset that she started me on Prednisone before he saw me. She told me that she did it because according to my most recent blood test I wasn't going to live long enough to make it to my appointment. (None of my levels were normal.) She started me on Prednisone on the Tuesday and I saw my rheumatologist on the Friday.

Aug 23, 2017 10:20 PM

Oh gosh sorry you've been through all that! I have all the same symptoms as you except the kidney problems. I'm going to get it checked out tomorrow as I'm at the doctors anyway for lung pain! Thank you for helping me πŸ˜€

Aug 23, 2017 10:46 PM

Your welcome. Best of luck.

Aug 24, 2017 10:58 AM

Prayers prayers prayers for you!πŸ™πŸ™πŸ™

Aug 25, 2017 6:15 PM

Hi..I have SLE which is Lupus I haven't experienced the rash but I have had swollen face,both lips,wrist..an I have body aches an pain in my legs ,knees,shoulders,an breast...hope this help..hope you feel better.πŸ˜„

Aug 25, 2017 6:22 PM

@Diamond5050 Thanks, I get a swollen face too, I have been ill for years so probably not getting better but thank you πŸ’• sorry you have lots of pain too

Aug 28, 2017 6:28 AM

I have non active Lupus and Sjogrens Syndrome as well Pain Lady. When I get sick I get sick. I pray you don't have it Little Lola. I'll be watching for updates.

Aug 28, 2017 9:45 AM

@Sjogrenspain77 Thank you, I will let you know 😊

Aug 30, 2017 12:56 AM

Yes I have it and I feel like this πŸ–•πŸ½when I think of it. Got me on dialysis 3x's a week, joint pain, impaired vision, seizures, exhaustion, hiding from the sun, eczema ... yeah πŸ–•πŸ½Lupus

Aug 31, 2017 7:22 AM

Sorry to hear that Lakee75 I'm really hoping I don't have it! I'm thinking of you πŸ’•πŸ’•πŸ’•

Apr 03, 2018 9:10 PM

I have Lupus and wonder if I have Fibromyalgia too! Seems they often go hand in hand. My biggest Lupus portion is the extreme fatigue. I had a sleep study done to see if there was something else (like Idiopathic Hyposomnia, or even Narcolepsy). Turns out I never stop moving at when I "sleep" ... They noted 412 limb movements in 478 mins (8hrs) of the study!! And I only reached REM for a total of 59 mins of the normal 90- 110 mins throughout the night! No wonder I was falling asleep at my desk!

Jul 18, 2018 10:15 PM

I have Lupus as well SLE it's extremely painful there's a community on the internet called mylupusteam.com that has been My Sanctuary and feel free to add my YouTube channel Fighting Lupus
It all about my lupus Journey. . .hope ur feeling better keep fighting. . .

Aug 04, 2018 7:39 PM

I was diagnosed with fibromyalgia 7 1/2 years ago but was told with blood tests I tested positive for lupus but doctor refused to diagnose me because I fitted the fibromyalgia more. So after hearing you all I’m beginning to think I may have both. I’ve had 12 surgeries on my kidney, bladder retention, Endometriosis with 1 surgery removing the access over growth of tissue & I have really bad stomach spasms that cause me to bleed thru the anus. It has been so bad that I went to ER because I was bleeding like if it were a menstrual period that doctors had to keep me to do tests just to say that my small intestine was inflamed. So I feel your pain and will pray for you and please message me I fee completely lost at times and feel nobody understands what feeing...

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