View Full Version : Highs and Lows
03-25-2009, 04:37 PM
Hi my name is Damina. I am 38yrs old and was diagnose with SLE 04/2007. The symptoms that I have with Lupus is mouth and nose sores, dry eyes, migraines, brain fog, SOB, rash on face and neck,extreme fatigue, joint(all) pain and hand and feet swelling. I also have a medical history of IBS and Hypertension. As a young adult I would always get sick easily but in 2003 I got sick with a bad gastrointestinal virus that I needed to be hospitalized for 3 days. After this episode ever time that I got a respiratory infection I would have extreme fatigue and terrible joint pain. Every time I would go to the doctors they would say that I just had a virus and of course a virus must run its course. I knew something was wrong because I knew that I would not get the same strain of virus over and over again but what could I do if I couldn't find anyone to listen. In Nov. 2006 I got another gastrointestinal virus and just started catching things back to back. This time the joint pain came and never went away. The pain just got worst and worst. Then my hands became swollen and extremely painful that I wasn't able to use them. In Feb 2007 I finally went to the doctor and then was sent to a Rheumatologist who ran a series of test but I still wasn't diagnosed until April 2007 once treatment was started. Things have been very hard for me since Nov. 2006 but finally I am on some medicine that has helped(Imuran and Plaquneil). Yes my Lupus is still active but my pain is much better than before. It just seems like it is always something going wrong. Some days are better than others. I am now facing possibly losing my job because I miss so many days from work due to this illness or side effects from the treatments. I am just trying my best to be positive but it is hard being having Lupus is like being on a roller coaster. Right now I am having a lot of problems with my stomach(nausea, vomitting, constipation, diarrhea) and that makes my diet very poor which open me up for catching things easily on top of that I am on Imuran. The doctors say it is GERD but I honestly think it has to do with the Lupus because my flares always start with a GI upset. I know controlling your stress is a big part of limiting your symptoms but it is hard to control stress when you are having financial difficulties and know you need to work and can't go because of being ill. Thanks for listening because talking to family and friends they just really want to hear you feel good but so often you feel bad. They also think it is easy to push yourself but with this disease it often let me know when I have to rest because that is all I can do. This isn't my life it is just something that I am going through and I have to figure out the best way to cope and keep going on. It helps me to talk about it but things have gotten better than it use to be.
03-25-2009, 04:44 PM
Welcome and wow you've been through it hav'nt you! Im sorry to hear you may loose your job on top of everything else. I always say things happen for a reason. I had a good job.But after so much times off work, i have not been in since Dec 2007. I need the money desperately, but what can you do if you are in pain and have severe insomnia.....nothing.So im going with the flow until i feel able to work again. I worry so much about the future, but then some days i forget to worry :)
You are amongst friends here.So i hope we can make you feel a little better every day.
03-25-2009, 08:26 PM
welcome to the group. i am sorry that you have to be here, but i am glad that you found us. you have really been put through years of misery. hopefully, your treatments will continue to help you feel better, and possibly you will go into remission. i surely hope so.
your story is so similar to many here. so many of us have had to completely change our lifestyles, including our work schedules. i hope you don't loose your job...times are so tough now.
know that we are here, i hope you find lots of comfort at WHL.
03-25-2009, 09:17 PM
Thank you for your kind words it always help to push on.
sick n tired
03-27-2009, 04:46 PM
It looks like you have been on the same medical merry-go-round that many of us have been on( many are still on it) I also have severe gastro problems and when they are very bad I am very ill. Have you been tested for H Pylori? That is something that can get in your stomach and cause problems, but it is curable.
I am not totally sure of this, but I think that both you and the docs are right about your gastro problems. It might be GERD, but perhaps it is triggered by Lupus..that is what I think about me...but try to get a gastro or other doc to say that.:nah:
I am sorry that you are having trouble keeping your job...we can just hope that you are not let go because of your health...have you thought about trying to get onto dissability? Perhaps that can be an option.
03-29-2009, 09:09 PM
Yes I have been tested for H. Pylori but it was negative. I have been seeing a GI doctor and he has said that my symptoms is from my GERD. He has done an Upper GI and a Gastro Emptying Study test which was all normal. The GI doctor told me that a lot of Lupus patients have a sluggish esophagus that don't push the food down like it should. My Rheumatologist says that isn't true. I just wonder if it is from the Lupus because I always have a GI upset when my flares are coming on. I just wish that they can find a treatment to help me. I have change my diet again but I just can't get no relief. I keep ending up in the ER for dehydration.
03-29-2009, 10:46 PM
welcome to the group my name is maria . im 38 yrs i have SLE since 2/2000 and it started bad for the first a year and half but it get better becuase you know and also learn to live iwth it any question or if you need to talk a will be here
04-01-2009, 01:30 PM
Welcome to our family. I am sorry that you've been through such a rough time, but I'm glad to hear that your meds are helping. You are not alone in the diagnositc merry-go-round, many of us have had to wait up to a year before we were told what we have. Then, there are also many members here who still have no definitive diagnosis:wideeyed:
You will find that everyone here is friendly, informative, caring and always willing to help! I'm glad that you are here!
Peace and Blessings