I am curious if anyone else has been diagnosed with Lupus shrinking lung disease? If so how do you stay positive when it’s difficult to breathe even being on oxygen 24/7? How do you work out when even riding a stationary bike is exhausting? I have back fractures from 18 years non stop steroid use and lots of immunosuppressants. Exercise is difficult!!
Hey All- I think I have Lupus but would really appreciate feedback on the beginning stages of experiencing this disease.
Since Oct 2019 I’ve gained nearly 20 lbs of which now providers tell me is more likely swelling retaining fluids. My hands and face are swollen and sore daily, some days I can barely get my rings off and visibly my face changes cause of the swelling. My joints ache daily, esp hips, hands, just over all sore joints. The fatigue I’m experiencing is beyond a normal “long” day. It’s like I’m terribly exhausted. Itchy scalp.
I’ve had gastro issues- dr did colonoscopy and found nothing but yet I get abdominal cramping, constipation, etc. I was just at a urologist for cystoscopy because every urine test I have blood in (not visible) however they found nothing wrong with my bladder and lightly mentioned might be my kidneys. I get mouth canker sores. Also I get dizzy all the time, feel like I’m gonna pass out. Lose feeling in my hands at night while sleeping (may be poor circulation?).
I have redness in my My face- however only appears at night or after a day in the sun. None of these things happened to me prior to Oct 2019. Does any of this sound familiar. Every time to look at symptoms online or ask friends that work in the medical field each of them says I need checked for lupus ASAP.
I’d love to hear anyone’s perspective and response. Thank you so very much.
I’m diagnosed from 2005 with lupus I take one year cortisone and plaquenil which I’m still taking but I have no symptoms since 2006. September 2019 I birth a wonderful girl and now I have all the time the anxiety that I will die because I am sick and she needs me and I am loosing it. I am well without symptoms but I’m always afraid that I am sick too long time and it will get revenge now that I have to be well.help me.ihave so anxiety that my hands pain and I can’t have nice time with by baby.