I am male, 39 y/o and I have lupus which was in remission for a number of years. The groups for men with lupus are not so active probably due to men don't usually having lupus. A minority it seems. My lupus is getting worse fast.
It had been limited to cutaneous in the past but has become systemic now. I have a lot of pain in my feet and hands.
I have tried to draw my pain, check out the picture.
Welcome, Osamo, we are glad you are here. Our group for Men and Boys with Lupus is new and could use some leadership, so please join it and feel free to post anything you think is useful there: http://forum.lifewithlupus.org/group/men-and-boys-with-lupus
I am sorry you are having a bad day. I hope our wonderful members can cheer you up. The pain picture is a great idea -- I can see how it might be very handy to print one of those up for doctors' appointments.
We are always pleased when men join, because as you say there are not many of you out there. And we do have a few on here. We have a women's group, but also a men's group that can help you talk about and deal with issues that affect men primarily. I think it will be really helpful for you.
You will find a lot of support, as well as just a place to vent, as we all need to do occasionally.
Dude your not alone. I’m also 39yr guy. And I understand us guys and our macho mentally. This site is amazing with the help support and information. We all agree Lupus sucks! Hope you have a great support system because for me that is how I survive every day!
Hi Osamo, welcome to our motley crew united by a mutual enemy…lol I’m sorry you are feeling so awful. I hope you post your story at some point so I can learn the differences between lupus in men vs. women. Maybe you could help us ladies find the words to explain this disease to our husbands in a way they can understand. I imagine it must be even more difficult for a man suffering from this. Not only because it’s rare but because many men have a if it’s broken then fix it sort of mentality which doesn’t really work when dealing with lupus. I noticed that your pain is all on one side, is that normal for you? When you feel a little better I’d love to hear your story. Gentle hugs, Annemarie
Welcome, Osamo! I noticed the pain mostly on one side too. Are you sure that you don't have some kind of nerve impingement in the spine besides having lupus? Best of luck to you!
Welcome Osamo, this group will help you so much with the many questions you have. We look forward to your story as we are interested in the men's side. When I look at your pain markers they are similar to mine today. I have bursitis in my hips, but the right side is really acting up today. My hands are always bad as they have arthritis too, lupus amplifies any pain you might already have any. So keep us posted on your situation.
I'm glad you posted a discussion and reached out. I understand your pain, my feet and hands and my wrists were the first signs of my lupus. I have a spot on my left hand, pinkie finger that I first noticed pain putting my coat on and the sleeve hitting it a few weeks ago. Really? putting my coat on caused pain? Sometimes I wonder what's next?
Welcome Osamo! We are all friends here and can relate to each other. My hands/fingers hurt all of the time and it makes daily life a real challenge. Actually, I hurt all over all of the time.
I was diagnosed with SLE on October 1, 2003. My rheumy has been trying to wean me off of the steroids for years and we are still trying.
My "everything" hurts in the morning. But once I get going it decreases. End of the day the pain comes back. I take one oxycodone pill every 12 hours.
And, there's nothing like a good night's sleep to ease the pain too. Many of us lupeys have trouble sleeping. How are you sleeping? Getting enough rest?
Bello!! And welcome to the family. Hope that you enjoy your time héroe and find information that Williams help -smile We are héroe 24/7/365 , log in at and time ! Once again WELCOME. To the family and enjoy…Beverly L.
