I have had Lupus for about 20 or so years, but actually dx'd for 13 or so. I have lots of problems off and on related to Lupus. Would like to share with others how you handle your life. http://www.healthboards.com/ubb/smile.gif



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I am one of those undiagnosed ones. but think for sure it is Lupus. I have had symptoms for about 10 years but just last year started hunting for the mysterious illness. after many attempts to convince me I just needed to see a psychiatrist a dermatologist was wise enough to take a biopsy of one of my rashes and came up a possible skin variant of Lupus (plaque-like mucinosis)but I have all the symptoms everyone talks about minus the joint pain. weakness and fatigue are the worst of my complaints. I did really well when they had me on 400mg of Plaquenil but she dropped me down to 200mg and I feel awful again. I just choose to do quiet small things that don't require alot of physical exertion and explain to the family that I don't feel good and hope they understand...but I still struggle with feeling guilty like I am being lazy or something but I swear my legs feel like noodles.

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Hi Tammy, I know how you feel as well. I havent' started getting achy fingers and joints until the last year or so. My Lupus has effected mostly my nervous system. I feel awfully tired and worn out a lot and have a hard time committing myself to anything ahead of time. Mostly because I can't follow through. I guess that's why I like Posting on Lupus forums so much. They are very forgiving.

Kathryn

Kathryn what types of symptoms do you experience with nervous system involvement?

TammyMN... I'm sorry... I just posted a very large posting here and when I went to submit it it disappeared... and now I don't have time to repost. This has happened to me 3 times in the last few days.. I hate that.

I will retype it again in a bit and copy it first... grrrrrrrrrrrrrrrrrr

TammyMN.. I had this typed up in my MSWord and retrieved it. So I hope my posting doesn't get messed up this time. :0

My Condensed Story of Lupus

My story stars out about in 1980. I found red spots and dots all over my legs and body. After a blood workup, I was found to have extremely low platelets. After a year of Steroids, my platelets continued to stay low. I then had my spleen out. That cured that. So far I have had no problems with the platelets.

NO DX..

About 2 years later, I was hit with an extremely painful inflamed nerve episode. My belly and legs and torso were effected hundreds of times since then. The first time I felt it, it was like a bruised aching area, it later turned to a very itchy area… and then, I scratched a bit more and it was the worst pain I had ever felt. I am not exaggerating when I say the pain is compared to holding a blowtorch to my skin. I wanted to pass out I wanted to die. It hurt. The Rheumy said my symptoms were the most bizarre yet. The pain persisted and came in cycles. I went to the Neurologist and was given Elavil… I didn’t care about the side effects, it helped. Thank God. These inflamed nerves came and went for many years and caused me extreme grief and still do to this day.

NO DX Lupus and Ms are mentioned, MRI’s are scheduled and many doctors appointments.

In about 1986, I suddenly was hit with extreme chest pain to the point that I couldn’t even take a deep breath. I was immediately sent to the doctor and found to have pleurisy and the inner chest wall was inflamed. It was so painful that I didn’t want to breathe. I am still plagued with the pain and also residual pain of the extreme scar tissue that has formed on my lungs which also makes it difficult for me to breath. I have to work on expanding my lung capacity and that is hard to do.

NO DX.. but suspicions of Lupus, no evidence of MS. Thank God.

In 1989, My vision becomes distorted… rushed to eye doctor, he said I had Optic Neuritis and gives me a one-week crash kit in steroids… I lose my eyesight in right eye anyway because of no more treatments or referrals to neurologists. I’m now blind in my right eye.

6 months later, my left eye vision becomes distorted… finally the doctor sends me to a neuroOpthalmologist where I am admitted with IV Solumedrol and in several days my vision comes back. Thank god. But, Why the hell didn’t the doctor send me to the Neuro the first time so I wouldn’t lose my vision in my right eye… I’m really hopping mad.

Pretty sure it’s Lupus by now.

In 1997, I was suddenly hit by Lupus induce Guillain Barre Syndrome. I was totally paralyzed for several weeks. I was treated with Steroids and Plasmapheresis and started to get control of my body functions in about 3-4 weeks. I was then sent to a Rehab hospital to help me learn to walk and learn my hands again. That was the worse experience of my life.

This year Lupus caused a major growth on my liver filled with coagulated vessels and grew to the size of a cellular phone. I had to have 69% of my liver removed. I have been in terrible pain since then, and go through bouts of irritable bowel and incontinence.

It’s very difficult to go anywhere with the feeling of one moment having to move your bowels constantly or the belly pain of not being able to move them at all. It’s also terrible to try to walk through a grocery store and suddenly urinate on yourself.

I know I list a lot of things happening here, and I have not complained of the pain. But, I’ll bet I have had 15 Spinal taps, numerous tests I can’t remember the names of and embarrassing invasive tests that don’t find any real problems. My teeth hurt constantly, My sinuses are inflamed every day, including the traditional sinus headache and my joints of my hands and feet ache badly. When I walk, I trip and do bump into things a lot, even in my own familiar house. My driving is limited to local neighborhood, because I get confused and can’t read the signs in rain or darkness and I get scared on unfamiliar roads. By mid afternoons of every day, My eyes become so blurred, I just need to stay put and try to rest for several hours. My mind is very selective and tends to retrieve information when it wants to. I forget words in mid sentence and I have been losing lots of interest in even being social. I feel like a freaking retard sometimes, that’s how much sense some of my conversations make… in social situations.

Kathryn,
wow, my story pales in comparison....you have been through alot. I can identify with the mind stuff though. When I am feeling at my worst I can't remember one second to the next. I was homeschooling my kids during my worst moments and my daughter basically taught herself the pre-Algebra because I would lose myself from one thought to the next. She finally just left the room saying I think I get it mom just forget it. And they would yell at me ....you already asked me that a hundred times...just bizarre.
do you have problems with people believing that you go through these things?

Hi TammyMN. No, your Lupus does not pale in comparison by a long shot. It is very serious and should be taken that way. Everybody's Lupus is different and impacts you in different ways. I find myself on other forums with folks who make me look like I only need a bandaid. But, we are all equally in this together.

Let me know how you are and what you are going through... we can learn a lot from each other.

Kathryn http://www.healthboards.com/ubb/biggrin.gif

Hi Kathryn, I was diagnosed with Lupus 6 years ago, but have been suffering prior to that for 13 years. It makes me mad to hear so many people have suffered for so long before this terrible illness was diagnosed.
Because mine was left for so long both my kidneys have now been damaged,I have an underactive Thyroid and also have arthritis in my hands and most of my joints. I have also been told only 2 days ago, that the lupus my now be attacking my Liver. I have been on so many drugs in the past 6 years I rattle, but hey I am still alive. I do feel sorry for my children who are 7 and 9, I have not been able to lead a normal life with them as there are so many things I cannot do. I do get scared now and again especially now that my Liver may be involved. I did manage to educate the people I work with about Lupus. For example, I was recently issued with a disabled persons badge for my car, which means I can park pretty much any where, the people I work with are getting stressed out as to why I was given this badge. When I explained the condition and how it effects me now and in later years they were stunned, and they praised me on how well I had coped in the 9 years they had known me. I do wish that there was more Lupus awareness and I hope they can find a cure very soon.

Hi Tina Ballerina, its nice to hear from you. Actually, you should have been treated for all your symptoms long before your dx's. Including the Liver. I had many symptoms over the years, and not dx, but they knew what medications to treat me with. It's too bad the doc's didn't do further tests on you to help detect that you needed something. It's hard when you have children..My major symptoms started when my kids were going into 7-8th grade... and progressed slowly. Sometimes with bad spells.

I never made it known to anyone at work that I had Lupus because, then if I even sneezed... they would probably talk and say.. oh it's her Lupus again. It wasn't until I had a very bad case of Pleurisy that my closest coWorker announced it to all my other coWorkers. She could have told them it was Pleurisy... that's the part that hurt my feelings.

She encouraged me to get a Disabled parking spot, but, my doc said I needed the exercise and so I chose the walk instead. Now, I'm on disability and couldn't bear walking that darned parking lot. I'm so forgetful and clumsy... I would be a liability the way I trip and bump into things. My driving is questionable as well, but, hey others drive and have worse vision than I do. Gotta keep myself moving.

Hang in there...

First, thank you all who have taken the time and energy to share your story. I am pretty new at this dx altho I have had it for a long time.
I couldn't reply for a while after reading your stories- for weeping. I realize just how easy I've had it and I am truly thankful- makes me stronger to know just how much y'all have survived- and look at'cha! you're still feisty and willing to lift up and support us "newbies."
I look forward to your advice.

Hi Jeri,Kathryn and the rest of you guys. let me know a little more about you, it makes me feel sad, but happy that other lupus sufferers are willing to chat and support each other. I have two kids who
are just 7 and just 9 and they have been through all this with me. The last couple of weeks my eldest daughter read that Howie
D from the Backstreet boys lost his sister to complication of lupus, she is now worried sick that i will die too. I was back in hospital last week and had confirmation that my Liver is now effected, I hope to see the liver specialist next week who i hope will sort me out.
thanks to you all
reply soon

Tina Ballerina; I love that name!
I am so thankful that this disease didn't hit hard while I was younger. All my children are grown and part of a wonderful support group that lifts me up when the lupus is active. Since I am so newly diagnosed, I am still juggling a bit. I struggled a little last week accepting that no matter how "good" I was being (as in obedient patient) the lupus went active in spite of the meds. I didn't want to accept that this disease will progress- that "control" is a real balancing act. Anyway, I gave it over to God and got on with the rest of my life- which is really pretty good.
Reading of how seriously this impacts a young woman's life and reading what others share of more their serious complications puts all of this in a "right perspective" and keeps me out of the pity-party mood.
I have grown a lot this year; my family has grown along with me. I can honestly say, now, in answer to my original observation of "why me" with "why not me". He's equipping me to handle this with His guidance.
Do you find yourself struggling with the myriad of symptoms and "surprises" and then have to cope with the (what I consider) the betrayal of some doctors in failing to be aggressive in their dectective work? That's what troubles me most when I read other's history with this bunch of diseases. Do you just let it go or what?
At least I had some thinking it was my heart and they paid attention and saw it thru to a dead end.When I went back to my original internist- he pegged it as lupus and sent me to a rheumatologist. However, I see now, from ya'll's experiences that I was VERY fortunate that I suffered no organ damage in the meantime.
I have sjogrens, diabetes2 and SLE; I am on celebrex, prednisone, plaquenil and they just added methotrexate this past week, I stopped taking salagen and have to go the opthamologist again tomorrow cause I'm having trouble focusing/seeing.
Anybody here who can describe their eye problems as they relate to lupus?
Thank you for listening and sharing.
Jeri in TN

hi jerri, I developed eye problems about a year ago. I could not focus well and i would wake up in the night and my eye lids would be stuck to my eye ball. It was very scary, I eventually plucked up the courage to go to the eye doc and was told i had a form of arthritis at the back of the eye due to the Lupus and that I would need artificial tears for the rest of my life. I wake most nights three or four times to put the drops in, otherewise it is really painful.

I have the "dry eye thing", too: Sjogrens. I was on salagen for a while, but side effects were worse than using eyedrops in the am. the blurry vision was recently diagnosed as a couple of things- need glasses adjusted to fit properly and also the interior of the eyeball is causing opthamic migraines- not painful, but weird lights that made me think that the plaquenil had caused damage to my retina. all is okay there.
I just started on methotrexate 7.5mg/wk about 2 1/2 wks ago- so far I doing fine, no side effects. just hope it kicks in fast to wipe out this growing flare before it takes over.