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dhyanayoga
02-05-2009, 03:07 PM
is joining the group. I've been ill with severe chronic fatigue syndrome for about 35 years and only recently diagnosed with lupus and RA. (I'm 45).

Why is it so hard to diagnose lupus - I'd been tested numerous times, even had the butterfly rash 15 years ago.

sits_inthe_corner
02-05-2009, 04:27 PM
Hello dhyanayoga and welcome to the site.

Part of the problem with diagnosing lupus is there's several tests that need to be done over and over again.

There are lots of symptoms that point to lupus but there's not that one magic thing that doctor's can look at and say YES it's lupus.

Lupus is basically our own immune system attacking the organs in our body's.

Any of the symptoms we have could be caused by other conditions. It's not till the doctor's can tie them all together as becaused by lupus.

I have arthritis...so what's so odd about that. Well one day I didn't have arthritis and the next day I couldn't walk. Now that's odd.

It didn't creep up on me...it marched right up and smacked me with a bat.

That was the first clue that there was something odd happening.

By the way...I'm still not diagnosed. My mother had lupus and my sister has lupus as well.

I have many of the rashes and other symptoms...but no diagnosis.

:lol: Don't know if this explenation helps or confuses you more. Perhaps one of the other members can explain it better than I.

Welcome to the board, glad you found us :lol:

lmangusrn
02-05-2009, 07:52 PM
I am newly diagnosed and to the site. I love it here and I think I feel better in the last few days that I have been involved than I have for months. Lupus is hard to diagnose. I was tested several times over the years but really never thought I had it. My mother did have it and recently died. My family doctor picked up on some unusal blood tests for me on a routine yearly physical. Because I told them I had a family member with it and the sysmptoms that they asked me about they sent me to a Rheumatologist and after a complete and full health history she diagnosed me with lupus, sjogren's, antiphosolipid antibody, hashimoto's-hypothyroid, and fibromyalgia. Needless to say my life made a complete turn around. I am a nurse and knew what all these meant but when it's you-then it's a whole new thing. I got on the internet and read everything. I also bought a great book that I am reading that explains things so well and in a manner you can completely understand. I love it. I have been angry, depressed and mad, but I feel more hope because of this site now and that I can talk here and find out what others have done or felt. Thsi is a great place for you to be and I know you will like it.
I have decided " I will not let this disease define me or bring me down" At least I will go down fighting if that's what I have to do.

dhyanayoga
02-05-2009, 08:05 PM
I have decided " I will not let this disease define me or bring me down" At least I will go down fighting if that's what I have to do.

Thanks for saying that. It's encouraging to hear. These conditions are so isolating. I've never had a social life and was never able to work, so I didn't even understand that there was something wrong until I realized other people weren't ready to go back to bed at 9 in the morning and could still keep going even after eating! I thought I was just lazy.

scubagramplit
02-05-2009, 09:11 PM
you are not lazy!! I have worked hard all my life, I grew up in the mountains in Idaho so it was a natural move for me to follow my brothers into the logging world, after three years of that I felt there was no future in it so I got into working on power lines which I have done for the last 25 years, I like my job and the work, yea it can get you down especially during the flares, I do worry some times that people think I am lazy however I have been reassured at work that nobody thinks that I am lazy, I am asked a lot of questions about lupus and I answer, I am blessed that every body at work understands for the most part what I am going thru and most all have offered help if I need it. they have seen how I look and feel during a flare and I try to go to work. I tell my wife that I used to be a stud, I have always been in good shape until now, enough about me, just remember, it's the lupus not you, I know how you feel. keep your chin up and don't let lupus or anybody get you down, its not your fault. God bless and best wishes.

rob
02-06-2009, 01:53 AM
[/quote]
Thanks for saying that. It's encouraging to hear. These conditions are so isolating. I've never had a social life and was never able to work, so I didn't even understand that there was something wrong until I realized other people weren't ready to go back to bed at 9 in the morning and could still keep going even after eating! I thought I was just lazy.[/quote]


You're not lazy. I compare the fatigue we get to having a lead blanket over us. It's oppressive. So many days I get up, have all sorts of great plans for my day, and end up going back to bed within an hour or two. And yes, this disease can be incredibly isolating. Others who are healthy cannot understand what our lives are like. Some, to their credit, do try. Others could care less. It's easy to become bitter, and angry at having been dealt such a bad hand. We watch life passing us by as if we were moving in slow motion.

Talking to others who understand can really lighten the load. And I find that the only people who truly understand are others with Lupus or one of it's many related conditions. I guess that's what has made this place as popular as it is. Anyway, if I haven't said it already, welcome to our group.

Rob

dhyanayoga
02-06-2009, 04:30 PM
lead blanket [/b]over us. It's oppressive. So many days I get up, have all sorts of great plans for my day, and end up going back to bed within an hour or two. And yes, this disease can be incredibly isolating. Others who are healthy cannot understand what our lives are like. Some, to their credit, do try. Others could care less. It's easy to become bitter, and angry at having been dealt such a bad hand. We watch life passing us by as if we were moving in slow motion.


Rob

That is exactly how I have described it for decades now - a lead blanket - and it would usually hit me about 20 minutes after getting up.