What to tell doctor...

Discussion in 'Fibromyalgia Main Forum' started by shaz73, Mar 3, 2011.

  1. shaz73

    shaz73 New Member


    After many years of not bothering to keep bringing up my unexplained fatigue to my doctor(because its difficult enough living with it, yet alone battling with medics...) I have recently changed doctors and now have a long appointment to explain it. So, what to say? My new doctor is quite analytical and I have a feeling I will have to state my case quite well in order not to be dismissed as "all in my head". In the past, most doctors have said, "oh its because you are depressed/anxious". Now, I HAVE had depression/anxiety but I do not currently suffer from these in any large way. Besides, I have always felt that the fatigue came first and then I got depressed about it. Any one else have that experience? What are the main things that I should flag up to the doctor - any replies gratefully received!

  2. Mikie

    Mikie Moderator

    A list of your symptoms, from worst to less worse, should give him something to work with. I would go a bit further and expand on each one. Fatigue doesn't tell how exhausted you are. Something like "Fatigue to the point that I am unable to get out of bed, perform any activities, and often feel as though I will fall down if I don't lie down," paints a more vivid picture of what you go through.

    Good luck with your new doc.

    Love, Mikie
  3. TigerLilea

    TigerLilea Active Member

    Be sure to mention the post exertional malaise. That alone differentiates CFS from depression.
  4. AuntTammie

    AuntTammie New Member

    one thing that I have used in communicating with doctors is the canadian consensus criteria for ME/CFS....using the diagnostic chart from that paper, I highlighted everything on it that applies to me.....then, since at this point I have almost every sign/symptom on there, I also prioritized separately the things that are/were bothering me the most and wrote any questions/issues I wanted to discuss

  5. springrose22

    springrose22 New Member

    Don't tell him anything. Write him a letter that he can read before you get there.

    I needed to find a new Dr. 2 years ago, and wrote him a letter explaining what a regular day was like for me. For example, I started with first thing in the morning, if I had a shower, I had to lie down for at least two hours following, or I would be about to collapse. Explain what your life used to be like before you became ill, and what it is like now. Make the letter as long as you need in order to explain everything to him. I also referred him to the canadian consensus criteria for ME.

    He was surprised and impressed by how ill I was. I don't think a patient had ever written him a letter before. I also used this method to get accepted for disability. Talking to a Dr. is a waste of time if you have a lot to say, as they quickly lose interest, don't write down most of what you say, and consequently, forget just about everything you have said.

    Good luck. Marie
  6. Mikie

    Mikie Moderator

    Good suggestions. I especially like the ones you put to paper. They become part of your records and that can help down the line and with disability. I just wanted to bump this for others to see because communicating what ails us to our docs is one of the most difficult things we deal with.

    Love, Mikie
  7. shaz73

    shaz73 New Member

    for the excellent suggestions. Will probably use a UK ME/CFS classification, symptoms list as am in the UK. Been writing a few things down, but as I have felt this way for so long it is hard to remember what life was like before, or how to explain what "fatigue" actually means for me.

  8. Mikie

    Mikie Moderator

    Our kind of exhaustion means that, no matter how much we sleep, we cannot get energized nor refreshed. As I said, "If I don't lie down, I'm gonna fall down," pretty much describes it too.

    Love, Mikie
  9. shaz73

    shaz73 New Member

    because I have had food poisioning this week - lucky me!! But have written a list of my symptoms that correspond with the criterea for CFS, and there are a lot. Having a long standing condition means that whenever you get something else you are completed floored by it, arent you? My sleep is all over the place and sooooooo exhausted. Not helped by having to go shopping and do household errands this morning with my husband. At least I have the afternoon to myself whilst he is at work so I can just rest and not have to make conversation. Bless him, he does his very best but still doesnt quite "get it" at times - feel bad for saying that but its hard for people to understand, even I dont really understand it and I am living it!

    Have re-made appointment for next week.