Confused and Scared

SteveHSteveH Member New Member
I got my diagnosis 2 years ago. My Dr ran the test just to rule it out, and it came back positive. A boatload of tests later...lupus. I'm in the middle of a nasty flare up now. I'm in so much pain and nothing seems to work. I'm terrified this is just going to keep getting worse.

 I'm a white male, 58 years old; I have actually had people look at me funny and say "Isn't that a chick thing?" To which I reply, "Yeah, and I'm in great company!" But it is true that most of the the information available is for women, and while it's very useful, there are aspects to this that seem to be specific to males, and I can't find any help. I feel frightened, desperate, and alone.


  • kkaeskkaes Member New Member
    Hi SteveH, did anyone ever reassure you? Are you doing better?
  • sunshinesEXbfsunshinesEXbf Member New Member
    Hey Steve, 
    I’m a 39 yo man and your right about the info being mostly for women. But there’s a few of us and in numbers we are strong. I have no idea how my lupus even came about but I’m learning that it’s a gradual thing. When you know something’s not right it’s such a roller coated after. I went from kicking **** in Afghanistan to being disabled/retired and not knowing why I sleep as much as I do. But I’ve made a lot of changes over the last few years and they have given me some of my life back. I cut out all soda except when I have a burger or something fast foodish. Water, water and more water. Still have my coffee in the morning but limit the sugar and to one cup. Ive added in a 10-30 min workout daily. Even if it’s just standing up and committing to being active for those mins I can move on to the next day and count a win. Vitamins and lots of protein for energy, and a strict routine. The sun is “The Debble” and that sucks cause I grew up surfing and being an outdoor guy. But I have made my house into something that is fun and enjoyable so I always have something to do. Not gonna lie that this is a life changing complete crap fest because you don’t know what tomorrow will bring. I can say I wake up and look forward to the day, flakes and all. Worst part is this baby face I have is slightly spottier? But I’ve found that having facial hair only makes it worse. They say beards carry a lot of dirt and even with all the expensive beard washes and man care my face still broke out worse while having a beard. It’s something I don’t want to hide anymore anyway and have accepted that it’s a part of me now. Above all keep smiling and find some good in life, it’s there you just have to look harder. With the kidney pain I would say don’t find a friend in the bottle and smoking definitely makes life harder. I’ll be around if you need anymore ear to talk too. Thanks for having the courage to post:)
  • cyndyvcyndyv Member New Member
    Hi SteveH. While I am female and can't relate to some stuff you are going thru, I can relate to bad flares and pain. I have been diagnosed with lupus for 35 years now. You didn't say what meds you are on. I take plaquenil, cellcept (for DLE) and Benlysta, which I love. As for pain, warm baths, massages and acupuncture help. Just take things one day at a time, rest when you need to, use lots of sunblock and wear long sleeve shirts, long pants and a wide brim hat. I really hope you feel better.
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