I want to give up !

Discussion in 'Fibromyalgia Main Forum' started by kalley167, Oct 5, 2005.

  1. kalley167

    kalley167 New Member

    From day one of my diagnoses of Sjogren's, I have been scepticle. I never felt it felt just right. I do not have severe symptoms, I don't use eye drops but maybe once or twice a month, I drink alot of water but don't feel I have an extremely dry mouth. No tooth problems and my dentists says my mouth isn't all that dry, no more than anyone elses.
    Anyways, this past week I wasn't feeling well had a headache almost everyday, body ached all over. Even had a spell that hit me suddenly like I had the flu, but it was different. (I have spells like this often) I felt totally wiped out.

    By monday I felt even worse, no appetite, just generally felt like crap, so I decided to see my regular doctor, the one who sent me to a rhumey last year. In his own words I have a "significant bladder infection". I have had at least 4 in the past year and 1/2. So we started discussing my illnesses and he feels that I don't have SS, He feels that the two primary symptoms of ss are not prominant enough. And he would like me to get yet another opinion. My first Rhumey was rude and not helpful, he had started the conclusion of SS, so when I changed on the advice of my PCP to yet another Rhumey he feels that the second one just looked at the notes of the first and diagnosed off that. And he has never even run his own tests on me. Not once. He diagnosed me on the first visit. Now I know that there can be mild cases but this mild??

    Could all these symtoms I experience just be CFS/FMS? And maybe nothing else?
    What blood tests have you all had?? I know I have a positive ANA, RF, SSA & SSB. But do all these rule out anthing else? Like Lupus? I am so confused right now I just want to give up. Stop taking the plaquenil and just deal with whatever this is.. Do you think I should try another doctor?? My pcp would like me to start at another Rhumey from scratch. To have them Diagnose me with their own tests and then if that one says SS than we go with it. But When am I to ever be sure?

    I have so many things that happen to me, symptoms and I am afraid they have missed something and aren't treating what is really going on. My Rhumey acts like SS,and also the CFS,is just an annoying illness not serious, but than I read about it on the Sjogren's foundation and read here all these illensses can do and see it can be very serious. My head is just spinning. Sorry for rambling on so.
    I just want to give up.
  2. JLH

    JLH New Member

    You might have a lot going on, but don't give up! I agree with your PCP that you should get another opinion from still another new rheumy--without telling him any prior diagnosis from any other doc.

    I have SS and it does not sound like you have it. If you have a positive ANA, you might have Lupus. I also have Lupus, which is a very serious disease--you can end up with organ damage to your major organs. Or, you could have fibro or cfs.

    I have a list of Lupus symptoms and fibro symptoms if you are interested in reading them to help you on your own diagnosis. They are lengthy, but I will be happy to give them to you if you like. Just let me know on a reply to your post.

    Hugs,
    Janet

  3. kalley167

    kalley167 New Member

    I would like to see that list. Maybe it will help me understand all of this. Thanks. I have just never felt that I fell into the SS diagnoses. Does these bladder infections go with Lupus??
  4. orachel

    orachel New Member

    I'm in same boat, only I know there's more going on with me than just FM/CFS. I just know it. Some people here have suggested possible mitochondrial malfunction based on my symptoms....I dunno what it is, but I'm still hunting for the right diagnosis. I have an ok doc who's treating me for FM / CFS, he's recently ordered sleep study, neuropsychological evaluation (to "measure" brain fog), and neurologist consult. I too just know that they haven't gotten it quite right yet.

    Its so tempting to give up and stop looking for answers. Plus, I'm a realist, and know that many of our symptoms just don't have scientific answers as of yet. But I'm still trucking, figuring eventually someone will be an excellent diagnostician and figure out what else is going on in my body.

    Keep calling rheumys and physiologists and neurologists until you find a few who have experience treating symptoms like yours....just describe the symptoms to the receptionist...not the current diagnosis. Make an appt with a few, and explain that you are not confident in the current diagnosis, and tell them that you are not looking for "verification" of the current diagnosis, but an unbiased opinion of your condition based on their testing and diagnostic skills.

    That's the only advice I have for you...I know its not enough. I called over 50 rheumys in one day....I was physically ready to hurl after dealing with all of that...and some of them are so DANG insensitive! But if you give up and stop being "proactive" in your medical care and research into your symptoms, your diagnosis will stand (which you clearly are not comfortable with!) and any conditions you do have will go untreated. I've gotta follow my own advice as well, as I still have to find a pain mgmt clinic, a neurologist, and a neuropsychologist who accept my insurance....I've been putting it off for days.

    I'll make a bargain with you....I'll make my phone calls, if you start making yours, ok?

    Great sources for docs are this site, web md...there's a ton. Also, go online with your ins and search by speciality any "in plan" physicians in your area.

    Good luck...I know what you're dealing with, and it sure isn't fun. But if you don't get angry and determined to find someone who can give you a diagnosis that "feels" right to you, noone will. My motto is anger beats despair any day. I really dislike feeling angry, but I'll take it over feeling hopeless any day of the week.

    I'll be rooting for you over here! Good luck!
    Rachel
  5. Yucca13

    Yucca13 Member

    I have weeks where the headaches are nonstop and body pain is disabling.

    I've been tested for most of the autoimmune disorders and am happy that I don't have one of them (at least at the moment). I say that because my former pcp told me ten years ago I had a 'mild' case of Lupus. I know Plaquenil is a fairly powerful drug, so yes, it would be good for you to know if it is truly necessary for you to continue taking it. I've heard that most people with fibro symptons have to wait for years to be diagnosed and then when they are many doctors don't really have much to offer. I had some epidurals in the neck in early summer and now my right arm (same side) is giving me a lot of grief. I've never had arm pain so am wondering if it is a side effect from the injections. Geesh, sometimes you keep trying things and wonder if you're doing the right thing.

    After putting up with all this pain and aggravation for years, my only advice is to hang in there and continue to be your own advocate and search for what helps you the most. You wondered if all the symptoms could be the fibro. In my humble opinion, I believe they could. Wishing for good days for you.
    Val
  6. Fudge43

    Fudge43 New Member

    ... you are going through a horrible time .. I can understand how you must feel .. scared .. frustrated ... but angry is a good one .. you can use it to move forward .. I did .. when I was first treated by my former GP and the idiot internest he sent me to .. it was horrible .. he kept telling me I was anxious .. then I graduated to deppressed .. in the mean time my thyroid was a huge mess and the over all pain was making me a wreck .. I would cry in the car after seeing these bozos ... then I got mad .. asked to be referred to a surgeon ( I wanted this thyroid out) .. but he was the key to sending me to a Rheumy and I was able to change my GP .. I had further problems with an endocrinologist but I learned from that previous experience NOT to let them "mold" me into what they wanted to treat .. you have to fight for yourself at one of the most difficult times of your life .. while you feel so awful .. I was lucky to have the support of my husband .. and I made it through ... I still have problems .. but I know the world won't come crashing down if I just say NO to idiots .. keep searching for the doctor you feel comfortable with ... and keep fighting for YOURSELF ..
    Hang in there !
    Fudge
  7. kalley167

    kalley167 New Member

    for your replies. I am hoping Janet posts the list of symptoms.