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Thread: Conflicting Doctors

  1. #1
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    Question Conflicting Doctors

    I'm really confused now. I finally went to the Rheumy today (my first time ever). I wasn't comfortable at all with this doctor because he had no personality. I didn't see him smile once - not even when he came in. After going through my symptoms and "why my doctor thinks I have Lupus", he asked a bunch of questions. I had mentioned how my muscles have been sore. He then mentioned how I was on prednisone and asked if it helped. I told him my muscles still hurt, but my joints felt fine. He pressed a few places on my back and hip and asked if they hurt. A couple of places did hurt, so he said, "You don't have Lupus. You have Fibromyalgia. Have you ever heard of it?" I mentioned I did. He repeated that I do not have Lupus because the blood tests my doctor ordered did not say I have Lupus and the other tests he asked my doctor to order also said I do not have Lupus. It was always my understanding that there is NO test for Lupus? Or am I wrong? Because I have muscle pains, bad sleep, and a few senstive spots I cannot have Lupus? He said my doctor would be the one to take care of my Fibromyalgia, but he's going to do his "job" (he said it with a lot of emphasis) by sending me to do more blood tests and make sure my results continue to say I do not have Lupus. Again, I didn't know there was a test for Lupus?!

    So, still in pain, still no medication, and now completely confused. He asked if I had questions, but I felt like he just wanted me to leave already. I'm gonna make an appointment with my PCP and wait to ask him whatever questions I have. At least he takes the time to listen and explain things - not just give me some handout (which is what I got on Fibro). I trust my doctor, so I'm hoping he can go over everything with me and hopefully he'll refer me to a different Rheumy :/

    Did anyone else have conflicting doctors?
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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    There are blood tests and 11 criteria that can help the diagnosis of Lupus but it can take a VERY long time. I have SLE and Fibromyalgia and there is NO blood test or specific tests for that one, just 18 areas or pressure points the doctor will press on (I think) that are very sensitive or painful. Fibro can cause chronic fatigue, headaches, sore muscles and tissues, sore joints, etc. It is hard to live with but it will not hurt you like Lupus can.

    Edit: Also, there are few drugs that can help for Fibro, regular pain killers are pretty much useless. One drug that I started in December I have found helps me some. It is an old anti depressant called Amitriptaline. It is not really used anymore for depression but it has been found to be helpful at low doses for people with Fibro. It has taken the edge off of my pain a little bit and helps me sleep better.
    Last edited by Hunniebun; 01-04-2012 at 02:19 PM.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    Hunniebun,

    Thank you for responding

    Thank you for clearing that up! I have all of the symptoms of Fibro including pain at some of the pressure points, but I guess I just got too comfortable with my doctor's diagnosis, not realizing the possibility of the Rheumy dismissing that diagnosis.

    I find it interesting that depression medications help with Fibro. You're right about regular pain killers not helping! My doctor prescribed a few pain killers during the process of getting a diagnosis, but they all didn't help. He gave me Cyclobenzaprine for my migraines (which I noticed is one of the possible medications for Fibro), which do help, but they make me super drowsy. I end up having to take a nap and wake up feeling like I have a horrible hangover. Hopefully whatever my doctor prescribes next isn't as bad

    Thank you again!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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    Ty,
    It seems that two docs can rarely agree on anything. As I'm sure you have read here many times, there are lots (over 60) of AI diseases, and they love to come in packs. You may be lucky and only have one, or one or more might show up later.
    Since you have a good relationship with your PCP, go over all of your questions with him. If you want a second rheumy's opinion, talk to your PCP about it.
    Hunniebun had some good advice. I know that Saysusie also has both SLE and fibro, so you might want to PM her for some sage advice.
    Good luck.
    Hugs,
    Marla

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    Hello Marla!

    I've come to realize just how often doctors don't agree. It's really frustrating because I want a definite diagnosis - not because I want the "label", but because I want help. The pain and fatigue keep me from doing so many things. I can't work a regular job because of it. I can barely do the laundry without feeling like I ran a marathon.

    I am definitely going to go over all of my questions with my PCP. I'll see what he thinks and ask his opinion on whether or not to get a second opinion. He's been really good about everything so I'm hoping he does send me to another Rheumy. We'll also have to wait a week for the results from todays blood draw.

    I agree - Hunniebun gave good advice! I'll bring everything up when I see my PCP.

    Thank you! I will definitely PM Saysusie for some more advice. She always has good advice and great answers to my questions.

    Thank you yet again for your advice and for responding! I really appreciate it

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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    ty,
    i also have lupus and fibro.

    my lupus is being held nicely by my medication.
    most of my problems are from my fibro.


    i wrote a couple of comments on another thread that are relevant here.

    Forum - Systemic Lupus Talk General Forums - Lupus Erythematosus Symptoms - Ouch my fingers!


    i am not sure how to attach the link.
    so i have written it instead.
    please read this thread.

    and i also agree with the advice . . . .
    get a second opinion.

    i hope your primary can help.
    thinking of you.

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    Hello again steve.bryce!

    Thank you for sharing!

    I missed the other post for some reason or I would have read it a lot earlier. I've been having a lot of finger pains as well. They feel like they're sprained (I had a bunch of sprains when I was younger from playing sports). I try to massage and stretch them so I can use them, but it doesn't always help. I'm not even sure if it's a good idea to be doing that, but there are times when I can barely move them and have actually dropped a few things. I'll be bringing it up when I see my doctor along with the different medications and supplements to help. Thank you for that!

    Do you get back pains from your fibro/lupus? I've been having some weird back pains lately. I did hurt my back a few weeks ago, but this doesn't feel like the same area.

    I will be talking to my primary about getting a second opinion. He and his stand-in have both been fantastic, so I know they'll continue to do all they can.

    Thank you for the advice and support! I really appreciate it!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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    Ty,
    Massage and physical therapy both help. My masseuse is a wonder. She massages me all over my body - even my hands and fingers, and I walk out of there feeling better for a while. Massaging and stretching are very good things to do!
    Hugs,
    Marla

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    Hi Marla,

    Great! Thanks! A couple of friends of mine do Lomi (Hawaiian massage), so I'll probably go to see them more often. Will definitely do more stretching too

    Thank you again!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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    I am glad I was able to help you out.

    I have problems with my hands, wrists, shoulders, neck, back, hips, knees, ankles, feet and toes joint wise, as well as ALL muscles/tissues. I have a pinched nerve in my lower back found by a CT scan, and they also found in that scan that my spine is much more worn out than it should be for my age. I suffer from headaches just about daily, chronic fatigue, the rash on my face once and a while, skin rashes once and a while, dizziness, overall feeling like you have the flu 24/7 right, like most of us will say we feel. Some days it gets so bad for me it hurts so much to walk. Prednisone is good for a while but its a drug you can't keep taking for long, or shouldn't be taking for long. I loved it when I was on it and sad when I was taken off, but this amitriptaline has helped and I am grateful for it. All it does to me side affect wise is give me a very dry mouth, which I have a special mouth rinse for.

    My rheum told me that the best thing you can do to fight Fibro, is to exercise. She's right, even though it still hurts like hell to exercise, I find I feel better after and hurt even worse if I lay around for days on end.
    I am glad your GP understands you, all you want is to be healthy because that's all that matters.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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