"It's all in your head"
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.
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!
Welcome aboard both.
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.
i don't ask for this:)
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: :!:
We understand you 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
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.
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.
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.
"It's all in your head"
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.