Hello - I'm new to Lupus too ...

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Hello - I'm new to Lupus too ...

Post by Merlin101 on Thu Mar 11, 2010 11:57 am

Hi Everyone

I'm newly diagnosed with SLE Lupus, but apparently have it mildly. I have had a bizarre range of syptoms over the past 4 years or so, with the most apparent being the chronic fatigue, joint pain, back pain, loss of appetite, loss of interest in life, and just generally feeling like s**t, Can I say that?

Every few months I'd go back to the Dr and say "there's still something wrong with me - do something!". She'd do blood tests which came back with nothing. I was tested for a variety of things including thyroid. I forgot to mention that I am also menopausal, which didn't help one little bit! Other symptons included sharp jabbing pains in my shins and legs, bizarre "spot" pains on my legs (like I'd been hit with something, but there were no marks or bruising), sore fingers/joints, feverish, a stabbing pain through my torso (like I'd been speared), and sore eyes. I do believe my speech and memory have been affected to some extent, but that has been ignored. Sometimes I'd wake up with back pain in the middle of the night. Most mornings I would wake up with pain and an odd feeling in my hands, extending up my arms.

Then more recently I had burning in my feet, burning around my wrists and mouth ulcers. It was at that point when I went back to the Dr that she tested me, and the results came back ... In November, I was diagnosed with Lupus.

I was devastated! Actually, I was angry that it wasn't discovered earlier. But also relieved that I could put a name to the thing that had taken over my life. I researched on the internet, and read as much as I could about this thing. I had heard of Lupus previously through an associate of previous work, but had no concept of what it really was.

I still managed to work full time, but I literally crash by about 2 in the afternoon, struggling to the finish line at the end of each day. I've been in a new job for 6 months now, and I work around 30 hours a week, which suits me just fine. My boss knows of my condition, but I don't belive he knows exactly what it means. One thing that bothers me is my eyes. By the time I get home from work, my eyes are quite irritated and sore, and have gotten noticebly worse in the past 6 months or so. I'm not sure if this is related to Lupus or not. I get home from work and pretty much just lay on the lounge and watch TV. I go to bed about 8.30 and a really late night for me is 9.30! I try not to over-do things, and I try to eat better than I have in the past.

Today I accidentally came accross a forum, in the USA. Then I found this one. I read others stories and questions and nod. I definately can relate, and I don't feel so alien now, and I have still managed to keep a sense of humour thoughout.

Anyway, that's my story. Thanks for listening.

Merlin101

Number of posts : 4
Age : 57
Location : Darwin, Australia
Registration date : 2010-03-11

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Re: Hello - I'm new to Lupus too ...

Post by Poppy on Sun Mar 14, 2010 2:21 am

Hi Merlin - Welcome to the board!

As you have probably read, Lupus is different for each one of us. I can tell you that I can relate to the majority of what you wrote above. It is good to finally have a name for our problem but when you find out - it is devastating. Well, all of us here do have similar symptoms and pain.

As for the eye problems you are experiencing, I, too, have had my share of symptoms. When I was first diagnosed with Lupus, it was attacking my optic nerve and I knew something was wrong with my vision - but not sure what. I could see clearly to drive and read but to focus on something was difficult at times. I didn't realize I had lost almost all my peripheral vision in one eye. I had extensive testing done and they found a blockage in the blood vessel (from inflammation) going to the optic nerve. The blood was seeping into my eye - although, it was not visible by just looking at my eye. Anyway, my rheumy treated it with a boost of prednisone and thank goodness that worked for me. Actually, I just had my eye appt. (yearly check-up) to have my retina checked and I got good news that all is well with my eyes. So, don't take anything for granted when it comes to your vision - have your eyes looked at by a doctor. It could also be that you may have Sjogrens which affects the eyes. I still have itchy, burning eyes from time to time - fatigue can cause this - I use over the counter eye drops which my doctor told me will help.

Our little group here is like family and we welcome you to it. It has been a little slow here of late but people check in from time to time and will be happy to help you with any questions or problems or just an ear to listen if you feel the need to vent. We all need to do that at times, too.

It's good you have a sense of humor - it really helps! It is way better to laugh than cry.

Just remember that you are not alone and we understand and are here to help each other.
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Poppy

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Re: Hello - I'm new to Lupus too ...

Post by Merlin101 on Sun Mar 14, 2010 8:42 am

Hi Poppy

Thanks for your reply. I will get my eyes checked and let you know how I go.

I'd like to apologise to everyone for getting this post in the wrong place! I was pretty tired when I did this!

Meanwhile I'll keep reading and listening.


Merlin101

Number of posts : 4
Age : 57
Location : Darwin, Australia
Registration date : 2010-03-11

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Re: Hello - I'm new to Lupus too ...

Post by Melody297 on Mon Mar 15, 2010 6:08 pm

Hey there Merlin,
Welcome to the message board. I have the sjrogens and Lupus.
I have found if I can work a quick nap during the day, which I do, during my lunch every day, it does wonders. I too still work a 40 hour work week. The nap really helps, I eat my lunch, then nap..
Dont apologize for posting wrong, We are glad to have you aboard.!! you might want to check out the forum on ... butyoudontlooksick.com it too has alot of intersting stories. and maybe can answer some of your questions
Melody

Melody297

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Re: Hello - I'm new to Lupus too ...

Post by Merlin101 on Tue Mar 16, 2010 1:38 am

Hi Melody

I did read the post here referring to the spoon analogy the other day and read that story. I didn't pay too much attention to anything else. Sometimes it's easy to get a little sidetracked when looking up info on the net! There is so much information out there, but I find people's personal stories and experiences are most valuable and helpful. It's being able to relate that brings comfort.

M

Merlin101

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Age : 57
Location : Darwin, Australia
Registration date : 2010-03-11

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