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Thread: "It's all in your head"

  1. #11
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    Default Lupus

    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
    Catlady4520

  2. #12
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    Default

    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!
    Lots of hugs!!!!!! Stefanie

  3. #13
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    Default Sounds like my wife word for word!

    I wish I knew what to do.

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

    osage

  4. #14
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    Default

    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!

  5. #15
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    I CANT TYPE LONG ENOUGH TO TELL MY STORY, BUT WHAT YOU ARE DOING IS SO GREAT, THANK YOU
    michelle

  6. #16
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    Default

    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?!?!?

    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:

    ops: WOW...guess I need that...any questions for me, I will be around!!! :lol:
    ~*~Shannon~*~

    "And in the end, it's not the years in your life that count. It's the life in your years."
    -Abraham Lincoln

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