I was recently diagnosed (Sept) after I woke up with excruciating pain in my arms and wrists. I'm still in the early phase where I'm on both prednisone and hydroxychloroquine, trying to wean off the prednisone but unable to yet. I haven't been working since then - not related to the Lupus. I'm planning on going back to work, but there are days when I can't imagine how I can make it through a day at work. The least strenuous tasks can exhaust me. There are times when I can barely hold a pen in my hand. My job is typically 40+ hours a week and high stress.
Im interested in hearing how you have managed this?
I, too, was recently diagnosed (July). I knew there was something wrong a few years ago, but they ran tests for everything BUT Lupus. The pain was unbearable and the fatigue was unbelievable. Getting out of bed was a struggle, nevermind the thought of going to work! I work a 40+ hour/week, very stressful job. I couldn't even stand long enough to cook or wash dishes. I started Plaquenil when I was diagnosed, and was told it could be up to 6 months before I started seeing any improvement. I've been on it for 4 full months. Though I still have a lot of pain, I am noticing an improvement in other areas. I have a hard time getting started in the mornings, and there are still a lot of days that I just can't do it, but it is getting better, a little bit at a time. I am a single parent and have to push myself through. It's not easy, but we will get through it.
Wishing you luck and sending prayers.
I work also in a very stressful job. I have missed 2-3 each month for about a year and I’m worried each time that I’m going to be disciplined.
I was taking adderall for fatigue and a lot if vitamins to make it through the day.
I too want to go back to work but I have no control over my body. Diagnosed Sept 2012 and taking meds but many days I feel like crap. Fatigue, pain, swelling, stiffness. Mornings are bad. I welcome any advice. Do you tell new employers about your diagnosis?
I work full time and then some in a job that is high-stress at times. It hasn't been easy, but I have been able to keep working the 13 years or so since my diagnosis -- once I had been on medication long enough for the symptoms to be under control enough to return to work I did so, and have been working since then. It helps that I can work from home when I need to. I don't know that I have any particular advice for making it work -- I try to prioritize, and not to over-commit. I know that I would not be able to work at some jobs at other less flexible companies, or certainly in some other professions. Everyone's level of disease activity is different -- I know I am very fortunate in that I have been able to keep working and to lead a reasonably normal life.
In answer to Latonya's question, when I started a new job, I didn't tell them. If I felt I needed special accommodation, or if I was concerned about having an unusual amount of absences right off the bat, I would have told them, otherwise I preferred to keep it private. That's just me though, you have to do what feels right to you.
Thanks to everyone for your responses - I'm going to try my best to go back to work and hopefully the meds will kick in and keep the symptoms under control. I'm optimistic today because today I feel really good! Almost no pain and I was actually able to go walk the dog and not collapse when I got back.
Also, I would not tell a prospective employer about it - even though they legally can't discriminate because of a health issue, its easy enough for an employer to come up with many legit reasons they hired someone over you. I'm not one to call out sick from work very often, and I'm just hoping I can power through the day and figure out how to make it work. I suspect I wont be doing much else besides working once I start.
I am a certified veterinary tehnician and I am lucky enough to have a felxible schedule (been at this job nearly 20 years and I finally got the schedule I want). I only work 3 days a week, 13 hours each day, so that I can be full time and get my benifits, but I get an hour lunch and my shift is split between patient care and paperwork so that I can rest when I need to. Without all this flexibility I dont think I would be able to work full time outside the home with my lupus as active as it is.