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Old 01-09-2010, 09:05 PM   #1
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mjb123 HB User
Is this Lupus? Does it matter because I'm on medication for Lupus.

I started having symptoms in 2000. Been through a lot of tests and have a diagnosis of "connective tissue disorder". I have been taking 10 mg prednisone daily for 2 years for this. This disorder qualifies under Family Medical and Leave Act as a serious medical condition and I won't lose my job because of sick days.

I woke up sick and I'm going to bed sick today and my flares seem to be increasing in the last month or two.

My problem with all of this besides feeling so sick that I wouldn't care if I died, is that people don't take "connective tissue disorder" seriously. I tell my husband that I don't feel good and that I seriously think that I'm not going to live long. He tells me to just have a positive attitude and it's all in my head. People at work never ask about how I am feeling although there are a handful of co-workers who know that I have this. They are always talking about their problems like migraine headaches and bowel problems. My family....my parents and siblings keep forgetting what I have when I tell them I don't feel good enough to go to family events. My husband probably could not even name one prescription medication I am on except if he sees that the medication costs over $100, then he asks why I am on it.

So, I am all alone with this disease I have and will probably die and family will be asking...now what did she have?

I walked up my stairs tonight to go to bed early, my legs hurt as I was walking up the stairs, my chest hurts (I've had a croup cough for a week) and I feel shaky and fluish and these are all symptoms (besides the cough) of flares that I get. No medication is going to cure this because I've tried a lot of different medications and nothing will stop these flares. But, I have to go on with life. I am expected to work full time to pay the mortgage. My daughter always wants family meals and I never, ever feel like cooking.

Anyway, this turned more into a rant, but if just once, people close to me would say I am sorry that you have this disease and I don't know what you are going through. But instead they say, well maybe it's just a virus or maybe your under stress....or the worst they say is "i don't feel good either". If I had cancer, people would be more sympathetic. Maybe if I had an actual diagnosis of Lupus, people would understand my symptoms better and know that they aren't having the same symptoms that I am. Mine are different. I have had the common cold and flu. The symptoms I am having are the same symptoms that I have experienced for 10 years and they are worse than the common cold and flu and have affected my balance and strength. I am only 42 and feel like I am elderly.

Ugh.

 
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Old 01-10-2010, 06:27 PM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Is this Lupus? Does it matter because I'm on medication for Lupus.

mjb, hi & welcome. It's terribly frustrating, I agree! I had problems for decades without ANY kind of Dx. My breakthru was switching to a big-city practice, where rheumies see these conditions in their many presentations. What I realized quickly: (1) I hadn't been given the most appropriate tests; and (2) my local docs had never heard of the low-odds form of lupus I have.

Anyway... have you read the stickies (permanent info posts at top of thread list)? They discuss tests, mention reading resources, etc.

Do you believe your dr. is "up to snuff"? What tests does he run? Do you get copies? What tests have been positive? Do you see the tests you expect to see? Does he discuss results? Is there any other "front" he could pursue? (For example, I had recurrent rashes, so that provided another avenue in addition to bloodwork.) Is this the only rheumie you've seen? Has he referred you to any other specialists?

However, I believe some people DO take a long time to resolve into, say, lupus, RA, etc.; and that some people stay "stuck" in undifferentiated connective tissue disease (UCTD) for years. If I were in your shoes, I'd READ A LOT, to try to develop some sense of whether your current dr. is up to the task. I hope you post more soon. Meanwhile, sending best wishes. Sympathetically, Vee

 
Old 01-11-2010, 04:19 AM   #3
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shewolf75 HB Usershewolf75 HB User
Re: Is this Lupus? Does it matter because I'm on medication for Lupus.

If you're not in a lupus support group, I suggest you consider it. There you will find people going through the same things you are to a greater or lesser degree. Also, I changed rheumies and found myself less depressed, more hopeful, and better informed, since he seems to keep up with the latest developments. Incidentally, there are 2 new lupus meds, and one Benlysta, may get approval the first few months of this year. Lupus is miserable and treacherous, and causes depression. If your family and friends would accompany you to a support meeting, they might understand better. Being understood means almost everything. I hope things look up for you.

 
Old 01-27-2010, 01:58 PM   #4
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karellh HB User
Re: Is this Lupus? Does it matter because I'm on medication for Lupus.

hi there , i feel bad for you as my family are exactly the same they never ask me how i am and are not sympathetic when i have flares. I went 5 years pushing for a diagnosis and got diagnosed 2 years ago even though my blood results were negative but i have almost all the symptoms of lupus . My gp treated me as though i was a hypercondriac but it made me more determined to get the help i needed , hope this helps you good luck x karel

 
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