Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Young with lupus

Aug 05, 2014 12:59 AM

I was recently diagnosed with lupus after a year and of hell and drs having no idea what was wrong with me. I'm only 23 and I feel like my life isn't what it should be. I'm so exhausted or in pain most of the day. any suggestions from anyone that has been dealing with lupus longer then me?

Aug 05, 2014 1:33 AM

hi my friend got this when she was only 18 , but after 10 years, she is fine, only consuming some specific pills and avoid sun, then you are good to go. don't worry a bout that. she has her normal life, very successful in business, has her own company. so just accepted and enjoy your life.

Aug 05, 2014 1:35 AM

by the way, it is very good that they recognize what's your problem, when you have your treatment, you won't suffer pain.

Aug 05, 2014 4:08 AM

I'm 28, was diagnosed at 24. I actually found the health service and doctors great, as I was young they were willing to help and get the medication right, unlike my poor gran who got it aged 80 and they didn't seem to care! right medication, you hardly notice it. in my fourth year now, and although you're not supposed to be Able to catch a cold, I caught one in march and it's not cleared up yet, but on the whole, life very much goes on without it being an issue

Jan 25, 2015 1:13 AM

My lupus was diagnosed when I was 47. But looking back over the years I think I had it in my late twenties just drs didn't know what was wrong. Also I am AnAneg which only one percent of patients have. I believe this made drs believe it was not there. But so far it has attacked my peripheral nerves, thyroid, bones with growths on my joints, my skin which gave me psoriasis which in turn have me psoriatic arthritis, my pancreas which gave me diabetes at 32, muscles with fibromyalgia, an flares of all over body and muscle pain which is debilitating for sometimes weeks at a time, I'm also noticing it is now causing issues with my veins in my arms. Getting harder and harder to start a iv

Jan 25, 2015 2:37 PM

Hi Arishannel! I'm sorry you and pain25 are suffering so much. I do not have lupus but was incorrectly diagnose a couple of yrs ago with it so I have done some research on it. I do know there are a lot of meds out now to help prevent damage to your organs and help improve your quality of life and prognosis? (Can't think of correct word right now) ....my advise would be to get yourself a good rheumatologist that you feel knows what they are doing, treats you with respect, and wants to help you with a good plan of care. I have known several people with lupus over the years and I believe it is possible to have a good, long, happy and productive life ahead of you. At a young age as you, you can take the bull by the horns, inform yourself about the disease and insist on excellent health care for yourself. I understand it's hard to be strong when you feel crappy ( been there only too often) so maybe you can call upon a family member or good friend to accompany you to the dr and be your advocate. Best of luck to you! Keep us posted.

Jan 28, 2015 10:29 PM

Hi, Guys! I have had Lupus for about 4 months now and I am 17 years old. It effects my kidneys already pretty badly. I also have a bruising feeling under my skin that comes and goes. Does anyone have any suggestions on how to help with that? I can't sleep at night from being in so much pain, and it is making me even sicker.

Jan 29, 2015 4:23 AM

Arishannel, & HannahM, & all of you with lupus, I'm sorry you have such a challenging illness. My husbands cousin (59 yr old) has had it for over 20 years. She's had many scary flare episodes but many more good days (not pain free) since she got under a good rheumatologist care. She drive 90 miles one way to do so. She knows I'm sick and waiting to get an official dx and referred me to her doc. Looks more like my issue is pointing to Sjogrens, and although I was made to believe it is no big deal, my Allergy/Asthma doc told me yesterday that Sjogrens can damage internal organs too. He's referring me to a Endocrinologist & back to my Rheumatologist. I've been sick with various illnesses since 1989, but my health nosedived in 2010. So I truly understand your fear, frustration, and pain. I agree with sandibeach; the 2 most important things to do for yourself is education on your illness (thank the Lord we have computers!), a very good Rheumatologist with experience in your illness is also crucial. And I should add that keeping positive, even when your day is the worst, will help you not only get through it better but to feel less pain. I know many think, that's easier said than done, and it is at first but it gets easier each day. Just find one thing to focus on as a blessing in your life when your day is rough. I'll be praying for you, and may today be a better day than yesterday! 🙏☺

Ready to start relieving your pain?

Join Community