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679575 tn?1245119050


I was just curious about how many people have managed to keep working fulltime with having Lupus and if you did how long did you have lupus and how was it before you had to stop working if you had to stop at all.  I managed to work full time for 2 years then I had to go down to 3 days a week and now i am on disability.  I have been sick for 4 years so it didn't take me long to go down hill fast. I am curious about other people stories because the only people i know that have lupus are the people in my support group and it is a small group.  So if you don't mind i would love to hear your story.  I am not sure of why this is important to me but some how knowing what is going on with other people that are in my situation gives some reassurance.  Also i would like to know what you first major symptom was. Mine was hives then anaphalitic (sp?) shock and almost dying from it.  So it would be great to hear from some of you out there in luppy land.  Thanks in advance

11 Responses
679575 tn?1245119050
I really wish some people would take a few minutes out of the busy schedule to answer this question It is important to me. I guess i just want to make sure  I am not some sort of wimp or something.  I just really need some feed back. So can somebody please help me with this question.
484098 tn?1259531132
I have a feeling the further down your posting is on the forum list, the less it's read.  I almost didn't catch it.  

anyway, I'm still working full time.  I don't think I would survive f I didn't.  My first symptom was dry eyes and hair loss.  But this was in 1999, and I had gotten the H. Pylori stomach infection.  I was taking 4 meds to get rid of the bug, and worried about it becoming immune to my meds, and losing part of my stomach.  Then, I am told that the bug was dead, but it would be three years before I could take another blood test to see if it was TRULY gone (I never did get re-tested).  Well, I started with the hair loss, and dry eyes, then loads of spit in my mouth.  Every time I spoke to someone I was spitting large amounts at them and was choking on my own spit so bad I was drowning.  Then all of a sudden, I was so dry I couldn't eat my favorite snack, popcorn.  I had the doc check it out and she thought it was from the Welbutrin I was taking.  So I stopped taking it.  My cheeks got red, I was crying all the time, and I was an emotional mess.  But, on top of that, my hubby and I were having lots of trouble just being friends, and the docs were attributing all my issues to that.  I starting having a bunch of problems with my blood sugar (H. Pylori acids most likely did that, tho), and shaking, then my toes were going numb all the time.  Soon the fingers were numb.  Well, I then found out I had endometriosis and went for surgery.  Not like I needed any more stress.  Next thing I know the doc tells me that the red cheeks are making her think I have Lupus.  She actually was not a doc, she was a nurse practitioner, since it's next to impossible to see a doc anymore.  She was pretty doggone smart, I'll tell ya.  At the time, tho, I was thinking she was stupid as hell.  I don't have Lupus.  She did the ANA test, and it came back positive with a 1:320 result, speckled.  Her receptionist called me to say YOU HAVE LUPUS, and I cried right there at work.  What made me feel better was a co-worker came in and said, "Oh my wife has had lupus for years."  He was so non-chalont about it I instantly felt better cause he seemed like it was no big deal.  There were days not long after that when all of a sudden my bones down the front of my legs would hurt so bad I couldn't move, and I sat still one day and didn't move.  My husband saw me sitting there and said, "I can tell you're in a lot of pain, huh?"  Yep!  And it's been downhill from there.  That RNP referred me to a rheumatologist, who took blood tests and said, "No, you don't have Lupus."  I was very confused.  Then my husband got ticked off that an RNP would be allowed to give me some bad news like that without the doc himself double checking it.  We switched doctors.  I have continued to switch doctors regularly and found one that called that Rheumatologist to ask why he said I didn't have Lupus.  Somewhere along the conversation, she found that he just didn't want to deal with our insurance paperwork.  That truly ticked me off. She also was thinking depression was more a cause for my symptoms as my stepson had died in Iraq, and the stress of that loss was about to kill my entire family.  

I couldn't find a different Rheumy nearby and was about to go to one far away, when I thought I would try again with the one close to home.  She had an opening and would take me but made me understand that she didn't like my insurance either and would only see me till september of last year.  I got in, got tested and was given a definite diagnosis of Sjogrens, Lupus (SCLE) and Autoimmune Hepatitis.  She was ticked that my regular doctor didn't give Rx treatment for my symptoms other than pain killers for 8 years and has since been treating me aggressively, making all but about 1% of my pain disappear (with Celebrex, Plaquenil, Enbrel and Methotrexate).    I contacted the insurance company and explained about what the docs have done BECAUSE of my insurance and they have since changed their ways, and my rheumy has stayed with them.  I'm excited that it's possible I could be in remission soon, and she even sounded like these meds could stop it in it's tracks for good.  I don't know if that means a permanent remission but not considered a cure, or what.  I'm excited.  Anyway, I have a co-worker that was on millions of different meds, and the meds were putting her in the hospital.  She now stopped all meds, and all her symptoms went away.  Lucky her.  She started with the Lemonade fasting cleanse and it's been uphill for her from there.  Hopefully, she'll stay that way.  

All of our bodies deal with this differently.  There were times about 2 months ago I didn't think I would be working much longer cause my hands were in such pain and swelling to the point of not be usable.  So, my fear then was figuring out disability.  Now my question to you is HOW DO WE GO ABOUT THAT PROCESS???
679575 tn?1245119050
Good question.  are you taking about going on long term disability because you are have trouble working or just short term disability just to recharge you batteries.  I live in canada so we have different systems in place here then you do in the states.  I have disability through my work but i will also have to apply for cpp with i think is along the same lines as your social security insurance. Someone please correct me if I am wrong.  Is these the process you was know know more about??
Avatar universal
I am currently not working but that sort of came about on its own.  I was working part time because I have 3 young kids (2 yr, 4 yr, 6yr).  I felt continually like the energy was drained out of me but figured that was just the work (long hours) and 3 kids.  Turns out it may be the lupus.  I had elbow pain which I assumed was from leaning on the hard computer desk so much.  Then I had sharp chest pain which brought me to my doctor.  ECG was normal so she ran bloodwork.  All was okay except ANA off the chart high.
She sent me onto the rheumatologist.  He discovered my Raynaud's and was highly suspicious of lupus.  None of the test that could have confirmed this came back positive which happens a lot from what I hear.  So he is looking at me as a"goint to turn into lupus" patient.  I have a recheck next month but my symptoms are worse than when I first went in.  I get muscles aches all the time. Abdominal pain that just won't quit.  Fatigue out the whazoo.  The main thing I have to contend with is the abdominal pain.  
I am pretty sure I couldn't get disability since I do contract work and it would be hard to prove that I could never work again although at this point work is impossible between the fatigue and pain.
679575 tn?1245119050
Since you are still in wait and see stage.  You should take pictures of any swelling or funny looking rashes because sometimes by the time you appointment comes around they might be gone. It is hard for the rhuemetologist to figure things out with only his imagination to go on.  So take pictures even if you don't think it has anything to do with because you just never know. and also keep a journal of all your aches and pains with dates time of day and what you were doing that day.  This will help both you and the dr figure things out. I always found that as soon as by doctors appointment came along most of my systems would disapear very very annoying so that is why I started taking pictures.  It helped alot. If you have a doctors letter it shouldn't be to hard to prove that you can't work full time. Stress is the one things that will make you so sick. So if trying to work full time is putting to much stress on you it just isn't worth it cuz you are just making yourself sicker.
484098 tn?1259531132
I have read several articles on the arthritis foundation site that certain foods will make the joint inflammation worse, and yet I've never tried to do without certain foods.  But, I've been on the nutrisystem diet, which definitely reduced the fats in my diet and I haven't had as much pain.  Very little pain, as a matter of fact.  Yet, last night I had a very large amount of popcorn with an entire stick of butter on it...and ate 99% of it alone, and today my joints are killing me.  So, I guess I need to pay attention to my diet afterall!!! If I can get rid of the pain through diet, I can get rid of all these expensive medications!!!!  then I won't have to worry about stopping my job!!!
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