The All In Your Head Theory....AGAIN

Discussion in 'Fibromyalgia Main Forum' started by dd, May 13, 2003.

  1. dd

    dd New Member

    Hi All,

    I went to the Immunologist today to find out what exactly this Granulomatous is. I found this diagnosis while reading thru some of my medical records about a month ago...this was a dx from 1998 that I was never informed about. I do know that it does affect the immune system but there is not to much info out there on the disease.

    Anyway, I made an appointment with an Immunologist to at least get some answers as to what it is and how it can be treated if in fact that is one of the many things that I have.

    This doctor did take a lot of time with me...about 45 minutes...asking me all the usual questions. I told him about the FM, CFS, Hypoglycemia and Hypothyroid. I really thought the appointment was going quite well. He seemed concerned and said that he has patients with CFS and FM. He said that he knows what we go thru with no one believing our pain is real and that he understands about people with CFS and FM wanting their lives back. He also said that he knows that most people with CFS and FM have all kinds of tests ran on them for them to only come back as normal and that can be very disheartening because we really want to know what is wrong with us. I was thinking "Gee, this guy really knows what I have been thru". He also asked how many times I was referred to a shrink. I laughed and told him too many times to count. Then the appointment started to get a bit confusing for me. He started to tell me that FM and CFS are both a "wastebasket" diagnosis when the doctors don't know what to tell a patient. I asked him right then if HE believes in FM and CFS. He never really gave me a straight answer. He asked me if I believed in it. I of course told him yes. He said that I was the only one that counts. If I feel better believing that is what I have then that is what I should believe. He then started to talk about pain and fatigue and how our minds can convince us to become ill. He said that people with FM and CFS have been helped thru psychotherapy. I said "so you do think that it is all in my mind then"? He danced around my questions like a politician. I asked him about Candida and he flat out told me that he does not believe in it at all. I also told him of the vitamins and supplements that I have been taking for over a year. He said that I should not waste anymore money on vitamins and to stop taking them but in the same sentence he said that if I felt that they were working for me then I can continue to believe that and to take them.

    Anyway, he did order some tests to see about the Granulomatous Disease. He also ordered some other tests...one of which was to test for the Candida antibody. I am glad that he ordered the Candida antibody test but am confused why he would do that since he doesn't believe in it. I am still confused if he believes in FM and CFS or not. One minute he would seem like he knew exactly what I was going thru then he would say something to make it sound like he thought it was all in my head. He said that when all the results come back and they are all negative that I should just put this part of my life in the past and concentrate on the future and know that there is nothing wrong with me and to be grateful. On my paperwork he put down Fibromyalgia and Chronic Fatigue as my dx.

    I have never had an appointment quite like this one. I can usually tell if a doctor is going to dismiss me and my symptoms from the get go. This one I can't make heads or tails of. He did order an MRI because I have had severe headaches for the past 2 weeks.

    Sorry for the long post. I just had to share this weird experience with you all.

    Peace,

    Debbie
  2. klutzo

    klutzo New Member

    DRUGS.... This is my gut reaction to your post, and it may be all wrong, but I have had an unfortunate experience with this. I think this doc may be on drugs. I watched the best doctor I had ever had in my life ruin his career and his marriage, and end up in prison, all because he got hooked on Dilaudid. It is so easy for them to get it, and they have a much higher rate of addiction than the general population.
    Whether it is drugs or something else, he just does not seem to know if he is going or coming, and I would look for a different doc, if I were you. His comments were patronizing, at the very least.
    So sorry this happened to you.
    Klutzo
  3. tiredTina

    tiredTina New Member

    I just went through a similar experience last week, but not as confusing. This guy is a piece of work! I don't blame you for feeling so confused, I am just by reading your post, and you were right there. You know, I got a bit excited about the Newsweek article that's coming out, I just hope docs like him read it. I wonder why he even became a doctor? It seems like so many just don't really care about people, wrong line of business, buddy!!
    All I can say is hang in there, keep demanding those tests no matter how crazy they think you are. I did that, and I proved the jerk wrong......I hope you can as well, although I wouldn't want you to have any more problems. Good luck to you.
    ~Tina~
  4. Princessraye

    Princessraye New Member

    I wish it was all in my head, it would be much easier to cure !

    I have heard about the "wastebasket" thing and my feeling is that the medical profession created that and just because they have not figued out what is wrong with us doesn't mean nothing is wrong with us. Someday they can find the proper name for it when they know the cause but until them these are just terms so people can communicate what they are experiencing.

    If you see him again, I would tell him what you told us and that he confused you. Maybe he can explain it. I would love to hear the answer.

    Hang in there !
  5. IndigoSC

    IndigoSC New Member

    So sorry to hear this. I've had many doctors tell me that it's all in my head. Also have had some say that we maybe started out with a tiny bit of pain and after time goes by have convinced ourselves that we are ill and in more and more pain (i.e. hypochondriacs...) About candida though, I've never had it, but I thought this was something pretty clear-cut, that there are tests for it and you either have it or don't, and that it would be like saying they don't believe in cancer or in a broken bone or something, when you can have tests that clearly see it...or am I wrong?

    About your headaches...I've been a bit concerned about mine also, as they are getting worse and worse and I guess my main concern is that they are always in the EXACT same spot on my head EVERY time. One doctor wanted me to have an MRI a few years ago, but I couldn't afford it. I still probably couldn't afford one, as I have no health insurance at all, but it does make me wonder if these headaches are something to be concerned about or not. I know that migraines do "develop patterns" but the fact that it is the exact same spot on my head every time kind of worries me. I may be worried for nothing though...what do y'all think??

    Take care,
    Indigo (Sharon)
  6. idiotsinc

    idiotsinc New Member

    From what I've read FMS is probably starts as all in the head... as a neurological condition. The pain and other problems come from lack of sleep and stress, they're symptoms not causes. After over 20 years of suffering I'm getting help through a shrink. He's treating me for ADD and anxiety (rtalin and Buspar). I still have a long way to go but can do a lot more than I have in years. Find a shrink that can explain the "pain-brain" relationship. Also read up on ADHD and anxiety, it should open your eyes, it did mine. I think the reason some of the people that try this don't find relief this way is a) they don't fully understand what's going on in their brain (you have to believe in the treatment and understand it for it to work) and b) they expect miracles and don't give it time. I did a lot of research on the meds I take and when I had problems, mainly with them and other meds I take, I took the time to weed out the ones giving me problems (OTC allergy meds and pepcid-ac). I also did a lot of research on working on my sleep problems (main factor in FMS?). Sleeping better than ever but not yet normal.

    Bob
  7. dd

    dd New Member

    for your replys. I really appreciate everyone's input on this. I am the type of person that has actually gotten up and left a doctor's office because I felt that I was not being given credibility and respect regarding my dd's. Yesterday was such a different experience for me that I didn't know whether to just walk out or stay because one minute he was acknowledging the disease and then he would turn around and make it seem like I was wishing there was something wrong with me that isn't really there. Another reason I stayed was because he did agree to run the tests on me. I figured at that point I might as well get something out of him...finding another doctor and making another appointment would take another couple of months probably. I did tell him that I am tired of doctors who don't believe in the pain and the fatigue and asked him if he believed in it because I really didn't want to waste my time. He said that he believes that I have "something" that doesn't have a name yet so for now they call it FMS and CFS to which he said is a "wastebasket" dx.

    Klutzo - Yes, he was very patronizing at the very least. As far as the drug thing goes...he was very contradicting with his words but I couldn't say if he was on drugs...but I wouldn't know a drug addict if I were to see one face to face. He was very strange though.

    Princessraye - I too wish that it was ALL IN MY HEAD. Then at least they could pin point things. I did ask him about the "wastebasket" dx and asked him if he did believe me about the pain and fatigue. He said yes that he believes that there is something wrong but there is no name for it yet. He would make a very good politician because he would never come right out and say he didn't believe me but he wouldn't say that he believed in the FM and CFS either...although he says that he treats patients with these dd.

    Sharon - Yes, there are blood tests for Candida...he did order that for me...even though he says that he doesn't believe in it. I can't wait to see what the results are.

    I am so sorry that you are suffering with headaches too. Do they come and go or are they constant? I know it is really tough without insurance. Is there a family health clinic where you live that will go on your income for low cost treatment? I would have it checked out...to give you some peace of mind and to make sure there is nothing more serious going on. I have had this headache for 2 weeks now and they are worse than any I have ever had in the past. They make me very dizzy and I can barely walk with them. I have a history of migraines but this seems to be different. Please keep us posted on your headaches. I hope you find some relief and answers soon.

    Bob - I have been seeing a psychiatrist for a very long time too. I have suffered from anxiety and panic attacks since I was 20...now 39. I laughed when he asked me how many shrinks I have been referred to because that always seems to be the first thing that doctors do with these dd's. I have been on many different meds for sleep and none have seemed to help me. I am glad that your sleep is getting better. Thanks for caring and sharing.

    Peace to All,

    Debbie