Need some advice

Discussion in 'Fibromyalgia Main Forum' started by bren22, Dec 16, 2006.

  1. bren22

    bren22 New Member

    My new doctor has suggested a myriad of tests. I am currently housebound and don't do any of my own activities of daily living except bathing. I started the tests in Oct and the increased activity has led me to have to use my power chair in the house daily as well as not being able to get up for my meals on a regular basis. I am concerned about the long term ramifications of the increased activity. The last time I overextended myself I went from 60 percent to housebound (25-30 percent). I promised myself I would not do this again. However, maybe you get to a certain point and how bad can it get. My doctor suggests that I should just get the tests done. That spacing the tests out is making it worese. I can't figure out whether a longer time of increased activity is better than a blitz attack on the tests and just have them done. Anybody have advice? My family is supportive but I don't want to burden them longer than I have to. I am scared that I will do all the tests and get worse and there will be no answers. I am also angry when I get told that my relatives who dropped by last week said that they didn't see a change in me despite the increase in activity. We all know how to put on a show and I didn't get up to eat with them. I hate when people think that they know what we are experiencing.

    Any advice re the testing would be appreciated. I could get the tests done by the end of Jan if I went full out or I could space them out until the end of March. I don't know what to do. My gut instinct is on holidays. I am just trying to keep moving.

    Bren
  2. Smiffy

    Smiffy Member

    As you say, having them all together will put you into a major relapse. My advice would be to pace yourself & have them done over a period of time so that you can rest in between.

    Do get them done.My tests, done many years ago, revealed that I needed an operation for hyperparathyroidism. We can have other conditions that our FMS/CFS symptoms are hiding.

    best wishes to you.
  3. turtlesyndrome

    turtlesyndrome New Member

    Hmm... that's a tricky one Bren. I would tell your Doctor exactly what you posted. Although I am not sure what type of tests you are talking about. Are they blood tests? I would Just follow your gut on it. "Go easy and if you can't go easy then go as easy as you can."

  4. Catseye

    Catseye Member

    Has he explained every test and why it's important? I get into arguments with every doctor about tests now. I have no idea what tests you mean so I don't want to say you don't need them, obviously, but what do you think? What is every test for and what are the treatment options depending on the outcome? Ask your doctor this and it may eliminate the need for some of the tests.

    For examples, I went to see my GI doc the other day to ask about the hypoglycemia bouts I was having at night. I suspect they're temporary and asked if they make time released glucose tablets or something I can take for when it happens at night. He wanted to do a hypoglycemia test, for one thing. It's obvious I have hypoglycemia symptoms in the middle of the night and I don't need to prove it. Well, he wanted proof. If I tell him I have a pain, he believes me, but not about this. Even though it's easily remedied with a few sips of juice and explained by my liver damage, he still wants me to go through with this ridiculous, uncomfortable-as-heck test. I refused.

    Then he wants to check my liver for hepatitis again. I asked him what the treatments were. He said for the hypoglycemia, I get refered to an endocrinologist and for the hepatitis it's interferon therapy. Well, I already did interferon and won't do it again, I'd lay down and die first it was so horrible. And I may as well go to the endocrinilogist to start with. The bouts are letting up already, so I won't bother, but do you see what I mean?

    Three months ago, I got in an argument with another doctor because he wanted a cat scan of my head. I had been complaining of adrenal fatigue and suspected I had low cortisol because of damage to the hypothalamus. I asked him what the test was for. He said to confirm damage to the hypothalamus. I asked him what the treatment was if he found it. He said we treat the hormone imbalance. So I asked him if we're going to do that anyway with blood tests, why the cat scan? And so that test was also ditched.

    You may be able to eliminate redundant testing, at least, if you pin your doctor down and make him explain each test, what it's for and what are the treatment options depending on the outcome. And don't let him get away with saying something like "we'll cross that bridge when we come to it". One of my doctors tried that with me.

    They are counting on your ignorance and you blindly following what they tell you. Maybe they are all really important or maybe you can get by with less of them. If your doctor isn't PO'd at you for asking questions, then you aren't asking enough of them, especially with diseases like ours where they really don't know what to do unless they have bothered to go find a protocol. If they want a cat scan of your head to look for a tumor and you aren't willing to have brain surgery, then you can forget that test! Just make sure you fully understand the "why" and "what's next" about all your tests.

    good luck!

    karen