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vic1
12-01-2003, 01:21 PM
I am writing a book about lupus for Barnes and Noble that I hope will be of help to the newly diagnosed. I wonder if any of you felt, before you learned that you had lupus, or even now, that your symptoms were "all in your head." Did anyone ever tell you that you were a hypochondriac? I'd appreciate any stories you'd like to share. And, don't worry, I won't use any last names. :)

Thanks much,
Victoria

truffles
12-05-2003, 04:47 AM
PICK MEEEE! :? I'm so frusterated with the doctors at the moment. Unfortunately I just found this site and am at work. I'll try to write tonight on my next shift!

admin
12-05-2003, 07:20 AM
Welcome aboard both.

:lol:

rachey12
01-27-2004, 09:24 PM
People don't really understand what it feels like even after I explain it. They look at me and see that I look just like them and they think I am making it up or being lazy. My mother has Fibro Mialgia and many people think that is a tired woman's disease but it is very real as well. At first she thought that, that is what I had so I did not go to the doctor right away. I went on a fluke and the nurse came in and asked why I was here. I told how I felt, that I had joint pain, tiredness, headaches, swollen joints all over. She took my blood pressure and said well lets see if there is a reason for you being here. I was devistated, she took the way I felt and made it insignificant. Somedays I am just tired and I don't "feel" like doing anything - my good friends understand to a point, but they have no idea. They think it is all in my head.

Norolhuda Md Desa
02-18-2004, 09:17 AM
do i want to have this sle???I DON'T ASK THIS..but some people seem not to understand at all...most people would say:it's all in your head...and i always tell myself that too..it's all in my head..but ..urrghhhhhh...god!!!when i feel so tired,,,fatigue,,,nobody will understand me... :cry: :!:

Saysusie
03-07-2004, 08:18 AM
Norolhuda;
We understand you :D We all experience what you are going through. People, sometimes, do not want to understand, acknowledge or believe our fatigue. The fatigue is the hardest thing to make them understand..it is very real to us and it is almost debilitating!!
You are not alone here!! We are here to help you and we most certainly understand!!

Peace and Blessings
Saysusie

hulagirl
04-29-2005, 09:13 PM
My first rheum. told me that I couldn't have lupus. Positive ANA, all of the classic symptoms, but he wouldn't listen to me. He said that when my kidney starts to fail, I should come back and see him, and until then I would just have to "suck it up." He told me that I should be seeing a psychologist, not a rheumatologist and that I should be ashamed. I lived in pain and shame for 3 years before seeing my new doctor for a check up, and being diagnosed almost immediately.

TracyDawn
05-02-2005, 05:42 AM
It's been SEVEN years here and still don't have a final diagnosis. I have the positive ANA and so many symptoms I can't even begin to write them all out at the moment. I did see a Rheum last year that said "Your pain is in the wrong place, I don't care what your blood work says you can't possibly have Lupus" He was turning my joints so many different ways I was just bawling with the pain. And had a 3 hour drive home on top of all that. I finally found a primary dr that is helping me. She is adament that it is Lupus and I will be seeing a different Rheumy in a couple months. For me, my family understands but aren't very supportive. And my in-laws, they are supportive in their own way but don't really understand. They watch our son when my dh is at work and I just can't get out of the bed. But they don't understand. I even gave EVERYone of them literature about it. I think they are more in denial than I want to be. Before I went to my new dr my mil actually said she thought I was a hypochondriac. I was so angry and hurt by that comment. *I* didn't ask for this, for some reason it chose me. So if I had any advice for the family and friends of people with Lupus it would be to READ and ASK!!!! Read all they can and ask questions if they don't understand. At least then they'd be trying.

polly pop
09-16-2005, 09:54 AM
I am the QUEEN of its all in your head.

I started out with achy knees... its just cause I'm standing all day.
My muscles become painful... its just all that lifting I did earlier(even when there was no lifting).
I got tendonitis in my wrists... I'm just playing too many video games.
I suddenly can't breathe... Doc says I've just twisted the wrong way.
I get a kidney infection... I just haven't been drinking enough water.

Fast forward to a year and a half later.

I go to the hospital. There I get diagnosed with pericarditis, pleuritis, kidney infection, severe arthritis, and anemia (i was within inches of a transfusion). Spent five days in the hospital. Two weeks later, they came to me with the results of lupus.

It never even occured to me that I could be that sick. No one in my family had it and they were all thinking along the same lines as me. I seriously thought that if I ignored the symptoms they would go away. I still have difficulty a year and a half later adjusting to the changes I am being forced to make in my life. And all I want to be is better.

meshmesh
09-27-2005, 09:33 AM
hi i am new to the group...infact i just wrote my "story"...when i saw this topic i thought....wow people here read my mind!!!

Gosh...my first doctor that i went to about what is going on thought i was clinically depressed so he gave me zoloft! I never took it though!
My second doctor wanted to diagnose me with something i do not have! Three doctors have disagreed with him...and one doctor i went to i explained to him about my rashes that came up he was only a pcp and he said he could not do anything for me and asked me to leave!

Finally...my parents....they have been supportive...well my dad has and so has my mom but she thinks this disease is all in my head and i think about it all day. They are also foreigners from Egypt and can have a different way of thinking...when these probelms first came up they were wondering what did i do to get this!!! they tell me every five minutes not to stress out to the point where i scream and say i am fine i am not stressed out! When the doctor gave me the diagnoses...my mom told me not to tell anyone! I know their intentions are good, but i wish we can go to counseling so my parents will be willing to understand whats going on with me and open their minds to a different way of thinking and accept what i have....my mom is in denial and keeps sending me to different doctors so that she will find one where they tell her what she wants to hear...it is crazy...but i pray everyday that she can accept this, b/c at this point i worry more about her and do not tell her everything about my condition b/c i am scared it will hurt her. I hope my parents can accept the diagnoses and not look at their daughter as a "sick-we need to shelter her" daughter...but just as their daughter.

catlady4520
09-28-2005, 06:47 PM
Victoria

I've been dealing with these symptoms for going on 5 yrs now. The first rheumatologist I went to basically dismissed my symptoms and gave me an anti-depressant. I finally got in to see the rheumatologist my PCP recommended. She said I had UCTD but not all the signs for a lupus diagnosis.
Now in April I started developing seizures. I had probably 30-40 daily and all night whenever I would turn over. My PCP thought it was possibly panic attackes. Finally got back in to see my rheumatologist and she did a ton of tests including a lumbar puncture. She thought it may possibly be MS but after all these tests said it is lupus of the brain. Have been on Cytoxan therapy and prednisone since July. Have 3 more mos of Cytoxan but am hoping things improve enough to stop it soon.

Alot us share the experience of symptoms that come and go and bloodwork that keeps changing. This is why April 1 is Lupus awareness because the symptoms can "fool" you. Hope this helps with your book....When it gets published, can you please let all of us know? Thanks

lupusgirl
10-26-2005, 05:52 AM
OO I'm a writer too, and I would love to help contribute to your book! What a wonderful idea and I wish you all the best with that!!!

Yes as for the "All in Your Head" thing I can totally vouch for that ! It took me two years to be diagnosed with SLE lupus and even now my doc will still roll her eyes when I go in to see her because I'm in pain. That used to be the most frusterating thing about the doctor visits was the skeptical it's all in your head routine. I would sometimes here "Your fine, your only 21 can't you enjoy your life?" I used to get so mad it's not like I wanted to feel sick all the time. But That's the medical world for you!!!

Please feel free to let me know if you need any help or want to chat even about your book! Good luck!

osage
10-30-2005, 08:10 AM
I wish I knew what to do.

Other than get put in jail for trashing a few doctors offices!

osage

hatlady
10-30-2005, 11:38 AM
:) It is so good to hear all the stories! We've ALL been there. Victoria, have you visited www.butyoudontlooksick.com and read the Spoon Theory?

I was pretty lucky. My primary doc is good. It was almost 4 years ago when I first went to my doc and said "I hurt. I have been hurting all over and SOO tired and it just isn't going away." Travelling pain, fatigue, and more pain. He said "Wait 10 days, a lot of the flu going around and it may just be a hanger-on." 10 days later I was back in his office. "OK, let's run some tests."

First batch - thyroid (I'd had non-Graves hyperthyroid about 15 years before), liver panel and the usual stuff. No problems really evident, a few readings slightly off. He didnt think any of those were at issue. So he ran a rheumatoid panel - ANA, double strand DNA and whatever else. "These numbers mean you might have lupus. I'll get you a referral to a rheumatologist." I just looked at him. I'd done a lot of online reading, and suspected fibromyalgia. But LUPUS?

First rheumy he sent me to was a JERK. Blew off my questions (all listed on a sheet of paper for him) and immediately wanted to start me on styroids. What prompted that Rx? "Just because." No reason at all! By the time I drove the hour and a half home, I'd screamed at my windshield enough to calm down. I called my primary and gave the nurse an earful about the jerk. My primary stopped sending people there - one other patient had come back from him the same week with the same comments!

The second rheumy - connected with a teaching hospital - was fantastic. Got me on Plaquenil and made recommendations that really helped me out. My lupus has stayed pretty much level since then - pretty mild. Blessedly mild!

I'm going to a rheumy nearer home now, she's good, she listens. That's what I want most, to be listened to and not told "its all in your head." I've been lucky - my primary had almost gone into rheumatology rather than family practice, so he had a clue. So many don't have that luck and wait years and go through all sorts of hell to get the proper treatment.

Keep us posted on how your book is coming - we're avid listeners!

honeyshell69
11-30-2005, 11:45 AM
I CANT TYPE LONG ENOUGH TO TELL MY STORY, BUT WHAT YOU ARE DOING IS SO GREAT, THANK YOU :D

shanniefly
12-17-2005, 10:54 AM
Personally for me, it started out as...you are too young for that, and then it turned into...It's all in your head!!!

I'm kind of thankful in a twisted way for the...you are too young for that, suck it up thing, because the more people said that to me, the less I noticed it causing me to develop a very high thresh hold for pain!!!

When I was first diagnosed...everyone went down a total shame spiral, and felt so bad that they were saying sorry every time they saw me...barf!!! Now that I have been diagnosed, "YOU ARE TOO YOUNG FOR THAT" is my least favorite phrase in the world...if I were too young, would I have gone through it?!?!? :mad:

I did freak out on one of my "so called friends" once for telling me that it was all in my head!!! When he called me a crazy hypocodriach(sp)...I said...yeah, that's right I'm crazy, but I wish it was all in my head, because they could fix that!!!

I still have problems myself with wondering if it is all in my head because of the amount of tests and time it takes to figure things out!!! I get to celebrate the new year getting tested for epilepsy(sp) :cry: I guess it really is all in my head!!! :lol:

:oops: WOW...guess I need that...any questions for me, I will be around!!! :lol: