Discussion in 'Fibromyalgia Main Forum' started by Keeshondmom, Apr 28, 2006.

  1. Keeshondmom

    Keeshondmom New Member

    This is my first post to this wonderful board and I need your advice about my upcoming Rheumy appt. I have FM &CFS As a result of receiving a TBI in an Accident 5 years ago.I have every symptom you all have expresses,so I won't go into it. Since I have knee surgery and rotator cuff repair last May and August my FM is completely unbearable and even with PT I cannot cope well at all. I have a 2nd visit with the Rheumy on May 5th and need to get the message to him that I need proper monitering and medications beyond what I am on now, Trazodone and Zoloft. The problem is that with my cognitive delays and memory issues he treats me as thought I am completely nuts. I do understand this, as I must take a list with me of my as I simply do not remember them unless I write them down as I experience them. if I am in a flare when I go there I just sit there like a dazed lump and can't even begin to comprehend his questions. If I take the list, he gets very frustrated as he has heard it all before. when I am out of a flareOUT I can usually represent myself pretty wel, but that is pretty rare nowadays. How do I get him to understand my situation without frustrating him? On a day like I am having today I could wing it, but I must travel 3 hours by car to see him and I know I will be in extreme pain by then.Another isse is that my GP has not evaluated or changed my Thyroid med's in 6 years and I know thats not right. Recently, I was reaching for a box on a high shelf and it came down on my head and I went to the GP after suffering mygraine headaches, shoulder and arm pain for 10 days and he was unhappy that I just did not accept my FM diagnosis and go away. Having had a previous head injury I just wanted some insurance that I had not rec'd a new one. I really need to know how to sound and act crediable when my diagnosis's are TBI, early onset demetia, depression FM & CFS.

    Thank you, in advance for any advice you have.
    [This Message was Edited on 04/29/2006]
    [This Message was Edited on 04/29/2006]
  2. skyeone

    skyeone New Member


    Well, I'm not sure how much this will help, but all you can do is be who you are! I have the same prob with memory that you do. I also make a list, and if the doc gets annoyed I have on occasion politely reminded him/her that they are there to help and not to do any harm. The fact that I've been criticized for not being able to remember things, is rather hurtful. It's not as if I'm doing it on purpose, as I have pointed out to several doc's.

    When a doc gets too annoyed for me to be able to handle, I take my business else where, I've changed Neurologists for this very reason!!!

    On a side note, can you please on future posts not type everything in caps? Also putting spaces between paragraphs as I have done here makes it easier to read. Typing in all caps comes off as if you're shouting. I'm not trying to be a bag here, I'm just offering a little advise.

    Sorry for sounding rather negative,
    All the best,
  3. Keeshondmom

    Keeshondmom New Member

    Thank you, Skyone for your advice, perhaps I will just have to get bolder with the Dr. Unfortunately, I don't have the ability to change Dr's at this time as I live in a very rural area and my HMO it tied to only one system.

    Sorry for the Caps, I did not even realize I was doing it. Thats just how goofy my mornings are.

    I am really intimidated by this appt. I think some of my problem is that I just don't want to believe that there is nothing they can do for me. I don't expect them to fix the lesions in my brain, just lessen my pain some.

    After my accident I was far to busy learning how to talk, walk, write, and think to deal with this FM stuff, and I have delt with the other issues and have been told that I have achieved all the recovery I will. Now, I just want to be the best 'ME' I can and the pain is standing in my way.

    Thanks for the post.
  4. Kourysgranny

    Kourysgranny New Member

    is most helpful to take someone with you. If at all possible take someone that knows you well. I would go with my sister when she was being treated for cancer because most of the time by the time she was ready to leave, she had already forgotten what the doctor said. I also have found that they are a little more "understanding" when witnesses are around. Make your lists, if he doesn't like it too bad. I recently went to a doctor and seriously considered not paying when I left. I was so angry at the way he acted. I did call back the next day and complained. I have no intention to go back to him. Good luck to you dear. I hope it works out.


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