View Full Version : this is so hard...
08-13-2009, 04:21 PM
In late march I was diagnosed with Lupus (SLE). Since then, it has been extremely difficult for me. The hardest thing for me is dealing with the heavy fatigue and the horrible pain. :hissyfit:
I am in pain every single day and the pain will last all day long. for the past 2 months I had been taking Norco for the pain but that only last for a few hours. I would have to take more to get any king of relief. on top of that I am on Prednisone, Methotrexate and Plaquenil and these meds give me horrible side effects that intensify this pain I feel.
just yesterday I went to see a pain management specialist and she decided to put me on MS Contin (Morphine for short!). I am really sad that I have been reduced to this medication just to feel any relief. I wish I could just wake up one day an go through the day pain free.
my question to anyone is will there ever come a time that i will live pain free? I am only 27. I want to have a family but I fear that lupus will keep me from having that. I am just so sad. I don't want to be in pain anymore...
thanks for your time
08-13-2009, 05:03 PM
Hang in there!! If it's any consolation, when I first got hit with this nasty disease it was the worst I've ever been...that was 5 years ago. No one knew what I had, I was only just recently diagnosed because my blood work turned positive. My symptoms vary, and wax and wane. I know everyone is probably telling you what to do but seriously watch your diet. Limit caffeine/chocolate/alcohol/beef..they are all triggers.Also, you might want to try acupuncture...it is worth a shot. It has no down side or side effects like all the meds. you will get thru this...be strong we all know and understand your pain.:cute:
08-13-2009, 11:03 PM
We all wish for just one day when we are completely pain free and free from the ailments of Lupus. This disease is so individual and we each suffer differently. I wish that I could give you a definite "Yes" to your question, but I can't.
The best advice that I can give you is to take very good care of yourself, avoid those things that might trigger a flare-up (as Pandagirl mentioned). Avoid the sun (UV, UVA, UVB) at all costs, try to get recuperative rest, try to do some form of non-jarring exercise on a regular basis, eat healthy, listen to your body and do not try to do more than your body is telling you that you can do. Learn as much as you can about this disease, its treatments, its medications, and how it affects you. Be proactive and aggressive with your doctors and do not let them dismiss you or your symptoms. And, come to us with any questions, concerns, fears, or if you just need to talk to others who understand.
I wish you the very best
Peace and Blessings
08-14-2009, 04:44 AM
Hey Dee...I'm four years older than you, but I feel your pain...literally. My pain started when I was 16, and has never let up. Once I was diagnosed last year with SLE (finally), I started to take charge of my life and make positive changes that have helped tremendously with the disease. Yeah, I still have my bad days...fatigue is one of my biggest problems, which is no good when you have a VERY active toddler in the house (*bangs head on keyboard*). Saysusie has some excellent advice (as always)...to be proactive and aggressive with your docs. Don't take no for an answer. God KNOWS it took me 16 long years to finally get a dx of SLE (I was actually excited to hear the results when they finally came), but I got it. Your rheumy should be your best friend...not someone you can't feel that you can trust. Just be consistent and don't back down. You can do this...and we're here to help!!
08-14-2009, 10:16 PM
thank you for all of your kind words and advice. I greatly appreciate it. I am new to this site but I am grateful that there are so many people that are willing to show your kind words and own experiences. It makes me feel like I am not alone...
thank you all again
08-15-2009, 11:14 AM
Sorry you are suffering. It is such a battle sometimes. As most here will tell you, you will have better days. Hang in there. It may take a little more time for the meds to get your issues under control. Hopefully, that will happen for you very soon. In the meantime, get lots of rest and take care of yourself. We are here for you.
08-15-2009, 11:34 AM
I am thinking of you and everyone has given such great advice.Just rest,take the meds and i hopesoon you start to get some relief...it will come. Just hang in there,we will all support you.
Sending you gentle hugs
08-15-2009, 12:51 PM
I'm glad you've found some comfort here. You are most definitely not alone.
08-16-2009, 09:13 PM
Yes, there will be days when you are pain free, the beginning of a the lupus diagnosis is the toughedst simply because you have to learn your body and the doc has to figure out what meds work for u, its frustrating and pianful but there will be brighter days. Im sorry ur in such pain I hope u feel better soon