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Thread: Newbie & REALLY Frustrated!!

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    Default Newbie & REALLY Frustrated!!

    OK, is it just me or are all rheumatologists total nutballs?! I am trying to find out what is going on with me -- after almost 8 years of being told I have a REALLY bad case of fibromyalgia and a @#$%load of arthritis and 5 surgeries to repair damaged disks and joints, now I have learned from my neurologist (who is my godsend and the only doctor I have found so far that I trust) that I have labwork that indicates I may have SLE. I have no trouble believing it, looking at the symptoms it makes total sense, and I have never totally bought into the fibro diagnosis, as I have just been sooooo sick for so long, and in ways that go beyond the usual symptoms of fibro.

    So I went to yet another rheumy, as in the process of getting the fibro diagnosis I went through three of them, with each more annoying and dismissive than the last, and this new guy is the worst yet!! Badically he said I probably just had fibro and gave me a handout for exercise and a 1200 calorie diet (like I've never seen one of those before!) and said if I would follow that everything would be ok. AARRGGHH! :bad-words: Luckily I had my daughter with me as a witness -- when we walked out she said she wouldn't go back to him for anything in the world! I did get some gratification - went to my neurologist last week, and he tried to make excuses for the new rheumy when I said what a freak the guy was. While I waited he got the rheumy his office notes from my visit, and when they finally came, after it took them 2 hours to fax them, my dr came in and tossed them on the counter in complete disgust, proclaiming them to be useless senseless drivel!! Sometimes the Universe sends you a little tidbit to make the hard parts almost worth it! :lol:

    Anyway, is there anyone out there who can either recommend a good rheumy in VA anywhere from Richmond to VA Beach?? Or is there anyone who knows of a way I can research and find out where I can find a good rheumy...I have looked at sites for the Arthritis Fn. as well as the Lupus Assn and they have lists of all the rheumies, but no way to find out who is any good!! I am about at the end of my rope -- I would just forget about it and go on with the same meds I have been taking for the arthritis/fibro, but if I really DO have lupus, there are other meds that could maybe help me improve some, instead of just treating the symptoms as I have been doing. Why is this soooooo hard!!???

    I'm sorry to have gone on so long -- I have noone to talk to about this, so I am glad to have found you guys! Thanks for listening to me rant (that was just the tip of the rant-iceburg, believe me!) and thanks in advance for any help or suggestions anyone has for me!!

    Sending hugs and wishes for peaceful pain-free days to all of you...

    Julie
    "Seize the day! Remember all those women on the Titanic who waved off the dessert cart!"
    Erma Bombeck

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    I cant offer assistance with a rheumy, but I understand your pain. You have been through quite a bit and you deserve to find someone who will listen and really care. Its a shame when professionals cant just admit that they really dont know crap about what you are dealing with instead of dismissing the patient as the idiot. Keep up your search and take care. Welcome.
    Brent

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    Sorry that I can't offer any assistance with locating a good rheumatologist. However, you deserve to have a doctor who listens, understands, cares and takes you seriously. So, do not give up the search and do not be afraid to stand up for yourself. Make sure that your doctors take your symptoms seriously and do not allow them to minimize you or what you are feeling.
    Like Ganeesha said, it is unfortunate that there are so many doctors who just will not admit that they know little to nothing about Lupus!!
    Educate yourself, learn as much as you can about Lupus (since you are certain that you do have Lupus), its treatments, its symptoms and the medications. Never stop educating yourself. In that way, no doctor will be able to tell you that you don't know what you are talking about. Listen to your body, it really tells you what you need to know and insist, to your doctors, that YOU know your body and you know when something is wrong and you KNOW that there is something that can be done to make you feel better!
    I wish you the best of luck, keep up the fight and do not settle fo anything less than what you know you need and deserve!!

    Peace and Blessings
    Saysusie

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    Hi Julie:

    I'm new to this forum and I just read you script and could feel your frustration. I too hovered under the fibro diagnosis and to some degree still do only a bit longer than you, now 17 years. I probably do have fibro according to my rhumatologist but also have something else (still unknown at this time but suspected lupus or some other connective tissue disorder). I know it is frustating when you have all the sympotoms but no diagnosis. My rhummy began to treat me with plaquenil about one year ago and some of my symptoms disappeared that had been with me for years. I don't know what you ar taking for fibro but I wasen't given much of anything only mild antidepressants to help with sleep and no that never helped with any of the other symptoms. The plaquenil really helped with the crushing fatique and sores in my mouth, burning on my scalp, hair falling out and pains in my hands, wrists, fingers, and sometime arms. It did not do much for the pain in my knees and feet though. Oh yes it also helped with those terrible flu like symptoms I seemed to have day and night for years on end. I kept telling the doctor "nobody has the flu this much". Still for years they continued to blame it on fibro. I went to every specialist in the book and to three different rhuemotologists and it was one I had previously seen three times before over the years that finally said she thought that I was right it may be lupus (she says can't say it is and can't say it isn't). It wasen't until my SED rate began to rise that she began to consider I might have something else besides fibro. Part of me dosen't want to get a lupus diagnosis because then I will have to 100 % accept that I have it and right now I continue to illude myself to the fact that I might not.. Wishful thinking. Anyway good luck with finding you own diagnosis and try what you can to feel better.

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    Hi Julie -
    Sorry for all your terrible frustration! It can be hard finding a good doctor, it seems. Do you have a PCP (primary care provider) who is making recommendations or referrals?

    I found my rheumy. -who is great - that way. They found him because he is head of a department at a major medical center. I would look up the major hospitals in your area, find out which have the best reputation (US News and World report magazine rates them - I will put a link in the link forum if I can find it) and then try to get a referral to someone there.

    Some hospitals post little bios of the docs., if you have a choice choose one who has been there a while, or one that mentions a specialty in lupus...

    I hope that helps!

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