New member with lupus

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New Member

Date Joined Dec 2013
Total Posts : 6
   Posted 12/25/2013 2:42 AM (GMT -6)   
Hi folks, I am 54 and found out I had lupus at age 21. I went river rafting and got very sick afterwards. After several months and lots of doctors, I ended up in the hospital with pericarditis (inflammation between lining and heart) and the fluids were moving to my brain. I was in the hospital for a month and it took another 6 months to feel normal again. But once I felt better and because of my age, I basically ignored the disease all my life. I have always been very sickly with a lot of pneumonia, bronchitis, fatigue, wide spread pain and inflammation. I think I have had probably 5 really bad flare ups and didn't go to the doctor or hospital. I thought I might die and so did everyone around me but I didn't have insurance because I wasn't working and just didn't go. I should also tell you that I was a party girl and didn't want to stop and be kind to my body. I think 5 in 33yrs is really good. Right? I'm getting older and feeling those mentioned symptoms all the time now. Did I tell you that I work full time and moved back into my folks house about a year ago because my mom is showing signs of Dementia. I have insurance and found a rheumy that specializes in lupus. All I need to do know is make the appointment. Yesterday, at work I was very busy and all of a sudden felt really sick like I had the flu w/o the cold, so I have been in bed for over 30 hrs now. I get up at 4am and work till 2:30pm
Come home make dinner for my parents and go to bed by 5pm, so I can do it all over again. By Friday I'm so fatigued and in so much pain that I can hardly move. But I keep on doing it cause I have to work but I am thinking is this how it is suppose to be when you hit 54 or is this the lupus telling me that I need to slow down. I'm thinking maybe I need a part time job? I just don't know what to think and this is why I'm here with all of you, so maybe I can get to know other people with lupus and to see if I might need to be on some medication or just keep on doing what I've been doing. NOTHING!!!

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 12/25/2013 10:48 AM (GMT -6)   
Welcome to our forum Glen54. Yes, you need to make that rheumatology appointment and start meds immediately. Some of the meds such as plaquenil take a few months to start working, but you can start pain medications that will help your overall quality of life. The prescription medications for lupus reduce inflammation through out your body and help improve your energy level. Without prescription lupus medications, your autoimmune system is attacking your entire body while it also focuses on one place (organs, joints, etc.). For the pain an over the counter (OTC) pain med I use daily is Tylenol Arthritis and sometimes Aleve.

I was working full time doing your routine of work, dinner, bath, sleep, repeat for a few years, but I had prescription Celebrex for pain and the last couple of years my rheumatologist had me try different meds to keep me going. I finally became very ill, couldn't walk and had to apply for disability.

The rheumatologist will be able to find the right combination of meds to reduce the inflammation and pain that will give you your life back. Take a deep breath and tomorrow call that rheumatologist. If you can't get in soon to see the lupus rheumy, see another one. Any rheumatologist can help you. Please, please let us know how you're doing even if it's just to vent. There's always someone here who can relate to you. Try to have a merry Christmas! Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Sjogren's Moderator

New Member

Date Joined Dec 2013
Total Posts : 6
   Posted 12/25/2013 10:32 PM (GMT -6)   
Butter flake thank you so much for answering my questions. I was Anxious to see if anyone would talk to me. I have been taking OTC meds and it doesn't come close to helping with the pain. I have 400 and 600 mg Ibuprofen and sometimes that helps. I have lots of pain in my feet and just had surgery for planters fasciitis, but after a month it still is painful. I'm hoping it will improve, so I can do the other foot. What kind of foot pain did you have that forced you to go on disability?
Yes, I will call the rhuemy tomorrow. It is very hard for me to be able to talk about my illness because most people don't understand it or they think I'm a hypochondriac. I guess that is why I hesitate to go to the doctor. I'm really happy to see one that knows about lupus. Ok enough. I will keep you all updated. Merry Christmas and I hope Barbra is ok in the hospital. I get sick with pneumonia all the time and just plain old colds every year about 3 to 4 probably not good to work in a school with kids that come in sick.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 12/25/2013 10:47 PM (GMT -6)   

Welcome to HW. Yes, you are going in the right direction by finding a rheumy that knows about Lupus. There are certainly more treatment options today than there were 33 years ago.

I don't think the problem is your age at all!!! It sounds like you've been unhealthy in some way for quite a while and I'm sure we can get you feeling better.

Three areas we can help ourselves before we even get to the Dr - food, eating enough protein & vegetables? - exercise, doing something for 5 or 10 minutes that gets your heart rate up every once in a while? - sleeping, do you get deep restorative sleep or do you toss/turn/etc at night?

See that Dr soonest!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Dec 2013
Total Posts : 6
   Posted 12/25/2013 11:33 PM (GMT -6)   
Lynwood, I toss and turn all night and watch the clock. I eat pretty good but I'm addicted to sugar. I know bad for you. I'm going to treat my body better this coming year. I have to change everything if I want to get better. Thanks! I need to make a list of symptoms and issues to take to my rheumy.

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 12/26/2013 6:44 PM (GMT -6)   
Hi and welcome to this wonderful forum! I used to work full-time, but found over time that my physical and mental state could not do it any more. It was a blessing when I cut one day from my work week. I have worked 4 days a week for five years now and it's great! When I tried to go back to full time three years ago, I ended up sicker, with more intense flares. This works perfectly for me and I plan to continue until retirement. I find that I have more energy for myself and the people that I care about. Life's too short to always be battling feeling miserable.

Take Care!
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