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  1. #1
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    Default CONSTANT PAIN

    First I want to say that I ALLREADY LOVE THIS GROUP! I feel a tugging inside me to log-on and see what every one has to say. I
    look foward to the time I spend here more than any other part of my day, or anything in my life for a while. This is really a very positive means of support. I Thank Saysusie with all my heart for having the ability to care for others, and follow her insights that led to the creation of this site!

    !PAIN! I thought I had experienced alot of pain, until Thursday.
    I've been sick -no energy, headaches, rash, joints hot & hurt, eyes itch, mouth a mess- since the 5th. But Thursday I had to drive myself to the dentist, because my teeth are literally breaking off. He says he doesn't understand how I can stand the pain, because 2 of my teeth have so much infection that he can't pull them until they get well.
    In comparison my teeth are only bothersome, compared to the Lupus.
    When I got back to my mom's house, after driving a total of about
    2 hours that day I hurt more than anything has ever hurt me. My kness and hips felt like they were "stuck" in a bent position, like they needed
    a good spray of WD-40. It was all I could do to drive me & my kids the hour home- after a 2 hour nap and a dose of loritab 7.5. The next day was even worse, my hands are swollen, wrists hurt, I was in too much pain to even visit this site. I've been soaking in hot tubs, using heating pads, and eating pills, while I waited to feel better.
    Now I've got to drive myself to see my pcp on Monday. The pain meds are not working! The prednisone is not working like it used to, and I've
    been telling him this since feburary. But now its just unacceptable. I'm so affraid that he won't increase my meds, or do what-ever he can to get me in the rheumy before September. I can't live like this until then.
    DOES ANY BODY HAVE ANY ADVICE ON HOW TO DEAL WITH HIM ON MY VISIT MONDAY!!???
    I've actually asked my mom to go with me, like a little kid! I'm 34 & I go to all my doctors visits alone - I prefer to process any bad news, before I share it with my family.
    But I have noticed in the past that doctors will sometimes take you more seriously if you have some one with you!
    It should't feel like a war against these doctors to get what we need. They should be more understanding, they should try to empathize. They have no idea what it is to live in constant pain, not to mention all the other constant promblems we have to deal with! I get so very mad!
    If any one has any input plaese, I can't wait to hear it!
    malay*b

  2. #2
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    hello malay*b, i'm so sorry for all the pain you've been going through.

    Ironically, I've had the same problem with my teeth breaking off. I've never really anyone else here complain about it, last time it broke i had apple pie :? Maybe we should start a new thread about this.

    About seeing u're doc, i think it best taking someone with for support, cos its a sad fact that some doctors do not take us seriously.

    All the best and please let us know how things go
    I intend to live forever, so far so good

  3. #3
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    I have been in alot of pain here recently. My last Rheumie told me I was overweight and if I lost it all that all my prob's would go away. Excuse me! I don't think so as I had all these prob's before I gained all this weight due to Prednisone and other med's. So now I'm off the another Rheumie, all the while feeling so bad I hurt all the time and Lortab 10mg is barely cutting the pain now. I did go to my back Dr last week and told him the prob's I'm having he's gonna try to get me into a Rheumie he knows and has offered to do an MRI on my knee as it's been hurting, popping, stiff etc., he also offered to give me a handicapped sticker which I refused because I would feel guilty as I'm sure there are people worse off than me, but if my breathing issues keep up along with me not being able to walk long distances I may have to take him up on this, it was so nice having someone actually believe you and offer to help you, the last 3 Rheumie's I've been to have done nothing. I feel your pain. Right now my fingers are so stiff and my joints in my feet hurt soooo bad. Well hope you find someone who will help you.

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    Default teeth breaking

    I sympathize with the teeth-I broke my last one eating pringles!I have always had great teeth-last two years they have went to PHTPHT...

    kim

  5. #5
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Malay;
    It is Monday and I hope that I am not too late in responding to you. There is absolutely nothing wrong with taking someone to the doctor with you. We who suffer with Lupus are sadly lacking aggressive advocates for our health care. So, we find that we must be our own advocates and that our friends and loved-ones must also act in that capacity. I know that your mother will most assuredly be your strongest advocate. Tell her all that you know, all of your symptoms, what medications you are taking and what they are for. Educate her just as you are educating yourself and then TAKE HER WITH YOU to see your PCP AND your RHEUMATOLOGIST! Then, the two of you act as a team to make sure that your doctors listen to you, take you and your symptoms seriously and that they treat you in a manner that gives you relief from your symptoms. Form a plan (you and your mother) about what you both want to say to your doctors, what response you want from your doctors and what action you want them to take. What you might miss, your mother will pick up on and vice versa. Your mother will do all those things for you that you would do for your children if you accompanied them to a doctor. Let her step up and help you to fight this battle! She WANTS TO DO IT and YOU NEED HER TO DO IT!
    It doesn't matter if your are 4yr old or 44 yrs old, having an advocate with you is smart health care and nothing to feel ashamed about!!
    Please let us know how your visit went and if you were able to obtain medication that will help!
    Best Of Luck
    Peace and Blessings
    Saysusie

  6. #6
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    Oh, Malay, I forgot....
    Thank you so much for your kind words. Like you, this site is my life now and all of you are very, very important to me. So, again....Thank You

    Saysusie

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    Default Doctors

    If your doctor won't listen to you, even with your mom there, I'd look for someone else to help you! I did that twice until I found 2 good women doctors, my GP and rheumatologist. They listen to me, and help me whenever I need it. They care. This has made all of the difference to me. I am in remission now. I took higher doses of prednisone when I needed it, and stopped any damage. Then when I was feeling better, I gradually decreased the dosages.
    Don't let a doctor rule your life. Some of them are insensitive.
    When I felt I needed more drugs, or steroids, I just asked for them. I would speak out for what I needed.
    Don't be scared to fight for your health. No-one knows how you feel except you! Don't be afraid of doctors. They are not Gods.
    All the best. BJ

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