Hi there! I am Sydney, and was recently diagnosed with SLE as well as fibromyalgia. I have been symptomatic for three years including fevers, rashes, swelling of hands and feet, unbearable joint pain, and hair loss. I was just put on B-12, D-2 and Plaquenil. I am currently working full time, and struggling greatly. I have changed my diet to all organic and gluten free. I am really at the end of my rope, sleeping 12-16 hours a day and never feeling rested, and unbearable pain. Is there anything else I can do to control the pain, or to help nip this flare up in the bud? I am just incredibly frustrated. I am 21 years old, and should be having fun, not sleeping all day. Help?!?
NSAIDs should be able to help with the pain. If possible part time work until you feel a bit better. It takes plaquenil several weeks before you start feeling better but hopefully it will help you a great deal so hang in there
It's difficult when you are first diagnosed for both you and the doctors to find what works for you. Warm baths and heat wraps work for me, as well as Advil. Be careful of the NSAIDs however, because as with any OTC med there are side effects...NSAIDs tend to be kidney related which is not good over long periods for SLE pts. I am surprised that you are not on prednisone. My doc told me that that is almost always the first treatment (even if short-term) because it is the fastest to provide relief. Plaquenil takes quite a bit of time to work.
You may also consider seeing a pain mgt doc.
I am not a doctor, and this is just what worked for me.
So sorry to hear of your struggles! I completely understand the frustration of wanting to have fun but cant cause you feel like a truck ran over you. I was diagnosed a year ago at age 19. I was busy with school, work, and living life when i got hit hard. I spent 5 weeks in the hospital before being diagnosed. I have never been the same, been out of work and now on disability. It has not been easy, i want to work, hang out with friends and do normal things. But ive learned i cant dwell on what i cant do but dwell on what i can. My friends have been a great support! They understand my limitations and help me to be able to still hangout. Lupus has changed my life and I've had to make many changes. But i look at what i still have and what i can still do. The hardest thing ive had to do is learn to say no and listen to my body. If my body says sleep i have to sleep. Some days are harder and some days are easier. Hang in there!!!! :D
I would talk to your doctor about prednisone. It has its side effects. But it will help with the pain and swelling right away. Warm soaks, if possible, in hot tub. Massage helps. So does stretching exercises.
I agree about the prednisone! Talk with your dr. Let them know that your symptoms aren’t getting any better with your current treatment. I hesitated for a long time because of the side effects … but it ended up I only needed a small dose daily and it’s helped tremendously. They have dose packs too. You get a couple of days of a steroid to kick you out of the flare. That worked well for me in the beginning. Don’t wait! You will feel so much better. Talk to the dr. If he doesn’t know your symptoms, he can’t treat them. Take care! We all know how you feel! We are here for you!!
Stay strong. You are not your disease. You will need to find the right balance for YOU. When you are in pain, try to relax. I know that sounds trite but it really helps. Warmth helps the pain for me, it might help for you also. I'd like to know if changing your diet helps you. I found for myself changing to organic really helped my joint pain. I haven't had too much success with going gluten-free......I love too much that has gluten, but I'm trying !!!! Go back to your dr. and ask about the Prednisone....it's the best help for Lupus. It's a double edge sword medicine....it has long term side effects, but it helps so much, you might only need to be on a low dose. I wish you well. Feel better.
Hi Sydney, I admire you for being able to work full-time! I can't even imagine how difficult that must be when you are in what sounds like a constant flare. I agree with the recommendation of prednisone - that is the ONLY thing that relieves the pain when I start flaring. Whatever side effects are, they're worth the risk when you find out you can move your body without pain. I've been on a low dose off and on since last October and the worst side effects I have are the moon face and the weight gain. I'll take that over the pain!
When I have a specific joint that is hurting, I take tylenol and ice the joint. That seems to help.
Take care!!
Hey. I know how tough it is to be in our twenties and have these symptoms from lupus. I’m 25 and was just diagnosed, and I haven’t been able to work at ALL for a while. This is just something to consider-- maybe you might have to go down to part time hours, or get certain accommodations from work like frequent rest breaks. These could be concrete steps to take other than dealing with medicines. I feel for you dear, and understand completely. Hang in there. You have support and friends here! Love your way.
Hi Sydney,
Boy can I relate! So sorry to hear you are in a flare. I too am surprised your doc didn't put you on prednisone atleast until the Plaquenil kicks in (which can take up to 6 months) or to get your through this flare. I would recommend contacting your doc. Also your body does need rest, so try to rest as needed until you start feeling better.
If your sleeping consider yourself lucky, I can’t remember the last time I slept more than two or three hours a night. I take hydro codons and morphine and still the pain is intense, so unfortunately I have no answers
Ann a, my vitamin d level is 20 and I’ve been on it for four weeks and regular at taking it. Hopefully my levels will rise soon!
Thanks so much everyone for posting and supporting! This group is really helping me already :)