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Life With Lupus

New to this group

Happy Thursday! I am 38 and newly diagnosed. I was diagnosed in February and avoided talking treatment with my Dr. I kept rescheduling my appointment for treatment plan. My Dr has been wonderful and in a good way pushy about getting treatment. Now it seems with everything going on, it will be a while. Anyway, always being a very active individual and being a mom of a seven year old, I am having such difficulty with the painful joints and extreme exhaustion. I have put on a significant amount weight as well. Which being body shamed since the age of six is also extremely difficult. Any recommendations? Does anyone find certain diets work better? Since I had pleurisy, I feel out of breath a lot. I did much research but I feel I value your opinions since, like me, you live with it on a daily basis. Please help a newbie! Thank you!

When I was 25 I got diagnosed and went into renal failure. I have had a blood clot in my head and currently have a neuro stent. I work three jobs and one being in a children’s hospital. I feel the joint pain issue and hate to tell you that so days are better than most. Keep staying active, exercise and good life help reduce flare ups. I have small flare ups from time to time, but have only had three large ones in six years. I do take extra vitamins and currently using joint otc medicine. Diet will do nothing until you are off of prednisone. I can say their no shame in your body and you are beautiful you are on a medicine that is making you look different, but you are alive and happy and that is what is important. I am sorry if I did not help you, but please keep reminding yourself you are beautiful and alive.

Thank you for taking the time to respond to me. I truly appreciate it. Your response is very helpful. Hope you have a great weekend!

Hi, had lupus for more than 10 yrs. Lost me my job and career due to exhaustion and brain fog. GET YOUR BUTT IN FOR TREATMENT!!! Particularly now with COVID-19. You need to get on drugs to calm down your immune system. We lupus people WILL DIE if we get it, due to an overactive immune system. It flares up really bad when you get COVID-19, overreacting to the disease, so you kill yourself. This is like what the Spanish flu did to young people, where they would be sick for days, have a day of felling better, then the immune system would overreact, and they would be dead the next day. Now the disease seems to be targeted towards the old and the weak (that is us!). I am on Hydroxychloroquine, Benlysta, and Mycophenolic Acid. These may not suit you, but they took me from being 30% function up to 70%! That may not sound like much, but it lets me interact with my wife as a real person, and I only sleep 10 hours a night and 2 in the afternoon, vs sleeping 19 hours a day. Please go in and see your Doc. Good Luck, and God bless. Jeffrey

Thank you for taking the time to respond. You are very helpful. I will be going in to talk treatment as soon as I can. I live in northeastern Pennsylvania and we are battling covid-19 pretty heavily so we have not been leaving the house. Have a great day!