Doctor's Who Think This is all Psychological . . . HELP Please!!!

Discussion in 'Fibromyalgia Main Forum' started by TerriM, Feb 12, 2003.

  1. TerriM

    TerriM New Member

    I am so mad right now I feel like throwing something! I came all the way to Vanderbilt Medical Center in Tennesse from Maryland where I live because the doctors down here are supposed to be so great. I was referred to a female Rheumatologist and boy did I expect much better from her. I just received her follow-up letter on me in the mail today. She says, and I quote:

    "This is certainly an unusual constellation of symptoms".

    She also says I clearly have evidence of fibromyalgia syndrome (although I actually have CFS and do not have widespread pain -- except some aching joints in my elbows -- and I do not have the trigger points.

    "Given her multiple medication sensitivities, I would recommend intensive physical therapy for this." -- I have no idea what this comment means . . . how can that help0 my sensitivities.

    "She has a history of Ehler's Danlos Syndrome but I do not feel that this is related in any way to what is going on now" -- Dr. Peter Rowe at John's Hopkins has found a link between EDS & CFS so I have no idea why she said this.

    and here is the clincher . . .

    "I also wonder whether there may be a significant psychological component here." Good grief, I've been seeing a clinical psychologist for over a year who says I'm the sanest person she's ever treated . . . she helps me with new directions to look for treatment & basically coping with the illness.

    This kind of thing makes me so angry. I just wanted to rule out other rheumatological problems . . . as well all have to do to get a firm diagnosis of CFS. I hate when Drs. comment on things outside of their area . . . how can a rheumatologist who met me for maybe 10 minutes say I have a psychological problem????

    I'll post another note with her info. so no one here wastes their time with her . . . she is also a young, female dr. who I thought would have been more open-minded and up on things!

    I'm trying not to let it, but this has really upset me and I know excess stress isn't good for us . . . in addition, my husband called first thing this morning to say my health insurance had been cancelled . . . it was a big mistake with the insurance company, but they did send us a letter and I had to call them and work it out! What a day!!!!

    Terri

  2. momoffour

    momoffour New Member

    I have been going to Emory in Atlanta and having Botox Injections and have gone through PT. No one understands unless they themselves have had a doctor look at them and "Refer to MRI Scans" or do bloodwork and come to the conculsion that its all in your head.
    My let down is that its not the Drs. "They do know I have these health problems and believe I do" Its just the fact is you can't look at it and say "Yeah there is the problem".
    I have thought about asking my husband or even my nephews about putting up Video Cameras up and not let me know so I can take them and say-Well this is me!
    Sorry to hear about your painfull situation,
    Cynthia
  3. sb439

    sb439 New Member

    ... god, this sounds soooo familiar. I feel with you!!! (I used to get ill from seeing doctors more than from anything else, until I was diagnosed, from sheer anger and stress.)
    Face the facts: most doctors, even rheumatologists and neurologists, have no clue about CFS.
    If you can at all afford it, do see a specialist in CFS. You can always see other specialists later. But you need the peace of mind you get from having been acknowledged as having one of the many things that go under CFS or CFIDS, and also, you need someone who has an idea of the 'bigger picture' of what's going on with you, and only CFS specialists can see this. (In my experience.)
    Don't let yourself be stressed out. (Say out loud 20 times: 'that doctor I saw is a complete idiot' or some equivalent. ;-) Then force yourself to put this experience out of your mind. Or alternatively, phone all your good friends, one after the other, and tell them the entire story. Then forget it.)
    (I can't help with the insurance matter, sorry.)
    hugs
    Susanne
  4. TerriM

    TerriM New Member

    I know it happens a lot and I have some good doctors who know that it isn't in my head . . . but she was just so misinformed on so many things, I was very surprised.

    It is difficult because there isn't a "test" to show the results to prove it. Even my husband has said to me before "you don't look sick" . . . at least not all of the time.

    I know it happens to all of us . . . I just needed a little commiseration tonight I think . . .
    Terri
  5. Lendi

    Lendi New Member

    I just went through the same thing yesterday,when I went for my monthly CFS checkup, but my Dr. said CFS/Fibro is just "bunk" then proceeded to tell me I needed hypnotherapy to figure out what had happened to me in the past to keep me from sleeping cause that is what is wrong. Never mind the pain, brain fog, weak muscles and never ending fatigue and all the rest. *sigh* I sure wish physicians had to walk in our shoes just for one day.
  6. Rosesark

    Rosesark New Member

    Sorry to say that my primary said the same thing on my records that he gave me to take to a rheum visit. He says he feels that there is tremeddous amout of psycological overlay due to chronic pain or other issues. These are also the records that SSD will be reading since i have just filed for disability. I think that when they don't know what's wrong they automatically say it's in our heads. Look elsewhere for a doctor. I sure am. Sorry he upset you. I know what stress does to all of us. Rose
  7. Frogdogger

    Frogdogger New Member

    I can relate! I've heard similar. I know it's probably not the nicest thing to do, but I have made a point of having very clear visions in my head of the guilty parties dying a very, slow painful death and a chorus of people around them telling them that they're crazy as they beg to be put out of their pain. So sorry doc... The thing about all this psychological stuff is that anyone who has suffered through what we do as long as we do is going to be depressed, angry, frustrated, etc. We'd be "crazy" not to have those feelings in response to what we live with. I'm venting now myself. Take care, there are dr's out there who do understand. I'm still searching for one to correctly treat my fibro. At least the dr's I have now believe it is real and are trying. Lots of luv and hugs, you deserve it. Di
  8. Teresa6868

    Teresa6868 New Member

    So frustrating to say the least. I am so sorry you had to go thru this nightmare. The Rheumatologist I was referred to simply looked at me after the exam and said "It could just be you". I just about died and took him with me. He is retiring so I did not waste my breath on verbally abusing him. Idiot!!!

    Hang in there, T


    [This Message was Edited on 02/21/2003]