View Full Version : Hi New Member and recently diagnosed
01-30-2008, 02:00 AM
My name is Robin, I've had symptoms of systemic lupus since High School, and have been undiagnosed for almost 7 years. Last July I was formally diagnosed with Systemic Lupus.
I'm 25, I'm single, no kids, great friends, and a great family. I do work when I can...full time at a bank. I really like my job, and they've been very understanding and good for the most part about me being gone so much. I love anything to do with being outside and sports. I love going to the games, and just being outside. The lake is a FAVORITE sport of mne. I love to ski and tube. I love doing just about anything.
Since being diagnosed it's been horrid, medicines that make me sick to my stomach, joint pain that makes me want to die, I've been in and out of the ER, and in the hospital for complications 3 times since November alone. I hate winter I think. It's awful. I'll gladly deal with being tired and putting on sunscreen, this ice and snow and 40 degree weather is awful on my joints.
I have a lot of questions, and would love to know what treatments have worked for others that I don't know about. Currently, I'm taking imuran, azaphethine, predisone, cippro, plaqunil, I take a multivitamin, I take Ambien for sleeping, paxil for depression, and dilaudid for pain. My doctor has suggest more then once that I get back to the gym, which I did vigerously before being diagnosed. He said it would help with the weight, which is awful....another subject all in its self, and would help with the joint pain. I find that hard to believe since most mornings I have to pry myself out of bed and pray that I don't die making it to the bathroom to get to the shower. Anyone got suggestions?
I'm also having a lot of trouble sleeping. Not sure what it is...
I think that's about it for now.....It's nice to meet everyone and I look forward to talking with you more.
01-30-2008, 11:32 AM
Welcome to the forum. You will find lots of support and info here.
When you described "prying" yourself out of bed, I was struck. That is exactly how I would describe my mornings! If I did not have to get my 7 year old ready for school, I firmly believe I would stay in bed most mornings. No matter what wonderful things the day may hold for me, I struggle to get my muscles to pull these painful joints into gear!
The pain of just walking into the kitchen... And taking a shower? Well, I feel like I have run a marathon when I finish. I have to rest a few minutes after I dress before I can brush my teeth, put on moisturizer, etc. I generally comb out my hair while sitting on my bed! Does that about describe what you are going through?
The frustrating part is that just a few years ago, I was clocking in at work at 6:45 am and "running" for 12 hours. I can't even fathom such a thing now!
You love outdoor sports, too, huh? We moved to Washington State for the outdoor activities we could participate in here. It was too hot and sunny in Texas for me, even though I did not know it was Lupus making me so ill when I got in the sun.
Sorry to hear about all that you have been through. Are the doctors getting anywhere in getting your flare under control? Have you read the other posts here to see what others are taking and doing? It is really excellent info.
Glad you found this forum and nice to meet you, even if the circumstances are not the best.
Cyber hugs to you!
01-30-2008, 11:46 AM
Just wanted to welcome you. I am a neighbor - I live in Mustang. I recall many days where it hurt just to lift my arms in the shower to wash my hair. Hopefully, you will find the right combination of medications, work, rest, and care that will help you bring this under control. Just try to stay positive and be grateful for what you can do every day. As a good friend of mine once reminded me..."Today, you woke up on this side of the grass. That's a good start." I try to remember that on the days I'm not feeling too well. Hope you find support here.
01-31-2008, 11:31 AM
Hello Robin :lol:
Welcome to our family. You've already seen how supportive our members are.
Sleep disturbances are a common symptom of Lupus. Also, many of us with Lupus also suffer from Fibromyalgia which can also contribute to sleep disturbances. Personally, I've had to go through several sleep aides before I found one that actually worked for me.
Your doctor is right about exercising. But, I know how hard that can be when your joints and muscles are in extreme pain. Perhaps you can start off slowly by doing light stretches and light calaesthetics. You can use soup cans as weights to add a bit of resistance. There are some good chair exercises that you can try while seated in a chair (I think there is a program on TV called "sit and be fit"). Anyway, it is important that you try to do some type of exercise on a regular basis.
I am so glad that you decided to join us. We are here to help you as much as we can. Again...welcome!
Peace and Blessings
01-31-2008, 12:33 PM
This sounds like the cheesiest thing but i used to swear by Richard Simmons tapes. Thats what finally got me back on my feet they were super low impact and at first i could only do a few minutes of it but then i worked my way up to the entire tape. I honestly think those tapes saved me :)
01-31-2008, 05:03 PM
Everyone is just great! My doctor is taking a very active approach to this, and he's been on the very very low tolerant side of putting up with my flares. Any sign of infections, or illness, he sends me straight to jail and I can't pass go or collect my $200.00! Naw...really he's been great. He does blood work often, he's continously watching and asking questions, and such. I feel lucky right now to have a great doctor.
Exercise????? Are you people nuts? I have to pry myself out of bed most mornings, on due to the thought that the bills don't pay themselves! Walking most days seem like a vigorous and daunting task. I'd love to have the energy and strength again to get back to the gym like I used to. I never did it for the weight control, but for the stress relief and because it made me feel soooooo good after.
Thank you guys for caring and giving encouragement. You guys are definitly going to be a major source and reason to get / try to get back into the swing of things.
lots of love and now full of hope,
02-01-2008, 06:11 PM
Are you on Plaquenil? Plaquenil and Cortisone shots every 3 months really help with joint pain. Sleep disturbances, mmm, my dr originally prescribed me Restoril (generic) when diagnosed with Lupus alone and it really helped. I wish I could take it again, but due to Fibromyalgia, it is not possible so I now take Flexeril. I originally didn't want to take a sleep aide; but I was awake too many nights. My brain wouldn't quiet down and just kept working.
It sounds like you have a great dr and the fact that he is listening is awesome. I used to work out 5 days per week in the Gym for 3 hours each day and then in the Summer swim one hour each day!! I don't exercise at all though I know I really should. My husband teases me because I drive to my mailbox which is around the corner. It seems many times that it aggravates either the Lupus or Fibromyalgia.
Keep us updated and let us know how you are doing.
02-02-2008, 09:54 AM
Welcome, Robin. You'll find a lot of good info, and listening ears here. It sounds like your doctor is really watching you carefully - that's wonderful! If you read posts here for a while, you'll discover that a good doctor who really understands lupus is NOT easy to find in every case. You'll fare much better with that doctor behind you.
I know what you mean about the exercise. It's so hard to imagine 'working out' when you can barely get out of bed. I was reading about a study being done at the University of Minnesota on fatigue in patients with a variety of autoimmune disorders. To date, the findings show that even with extreme fatigue, it's still better to TRY to do at least a modest amount of exercise each day. Low impact, short duration. I've been diagnosed for about 18 months now, and I'm just beginning to go back to a little exercise. 15 minutes most days - that's about all I can handle right now. I wasn't an exercise fanatic before (far from it!) but I can't stand feeling so weak and I DO feel better when I work out, even that little bit. I also think it helps with the depression, which is a problem for nearly everyone who has a chronic illness. Hope you find some strength for that.