New symptoms and scared...any thoughts?

Discussion in 'Fibromyalgia Main Forum' started by theatergirl, Sep 10, 2008.

  1. theatergirl

    theatergirl New Member

    Hi all,

    I have Kaiser and am stuck with uninformed doc, making things very tough. He pulled the "psychological" card again, since all the standardized blood tests only show on IgG for CMV, HHV6 and EBV. Been sick relapsing remitting (somewhat lucky) for 11 years with CFS/ME, but mostly sick for months and months at a time. Newest big crash started in May and have been housebound/mostly in bed, since then.

    New symptoms are scaring me. Upon standing, heart begins to pound like crazy, dizzy and feels like everything closing in, kinda approaching fainting, thinking this is NMH stronger than in past relapsive periods. My legs are always severely affected, but left leg now has swelling in the muscles, particularly calf, bumpy and hot inside the muscle. Feels like multiple swellings in muscle itself along with swelling that has so far been called a lipoma under left arm, causing nerve pain and swelling from breast to spine and up to shoulder. All problems are left sided.

    My thinking is that this is a severe muscular viral attack, but do not know what to say to doc. They still keep labeling my problems as psychological, I know they aren't and feel trapped by Kaiser system. Any advice, thoughts and what to say when, as debilitated as I am currently, I have to go to Kaiser again.

    Thanks for any help and thoughts,
    Theatergirl in Sacramento
  2. SkeptikSharon

    SkeptikSharon New Member

    Hi Theatergirl,

    I'm not sure what to say to your doctor, especially since they are Kaiser docs, but I feel for you. My pain management doc keeps saying that my stomach issues are psychological in nature, and keeps wanting to put me back on antidepressants. This is even though I have told him that I went through years on antidepressants, tried most of them, and only felt worse on them. I do not believe depression or anxiety is CAUSING my problems, but rather the other way around. When I feel decent, I'm not depressed or anxious. However, when I don't feel good, when I'm in a ton of pain and can't even eat, then yes, I do feel down. I feel especially depressed whenever the docs want me to go on antidepressants or to see a psychiatrist.

    Finally, the last time I saw my pain doc, when he brought this up again, I asked him straight out - "What do you think a psychiatrist is going to be able to do for me?" I explained AGAIN how I've been on most of the psych meds, all of which either did NOTHING for me OR made me feel more depressed and more anxious. Maybe antidepressants are the answer for some, if they have a true chemical imbalance in those particular neurotransmitters, but I do not believe that is the answer for me.

    The problem is that there are SO MANY conditions that can cause psych symptoms, and unless you are treating the underlying condition, the meds are not going to do anything. So I told him, rather than just treating the symptoms, how about we try to figure out what might be CAUSING the symptoms? So I got him to authorize testing for viral infections, am seeing other docs to have my thyroid and adrenals checked and other things, and am researching other possible causes of FM symptoms.

    It really pisses me off when the docs try to blame psych issues for the physical issues. And of course, when I get angry, I cry, so that makes them think even more that it is psych problems. But I am not willing to accept that. Its a cop-out on the doctor's part, because the doctor can't figure out what's going on or how to treat it. Since we all know doctors are GODS, this is unacceptable to them. If they can't figure it out, it must mean that it does not truly exist or is all in our heads, right? WRONG! All it means is that they need to do more research, learn more about the conditions, and try to figure out what is ACTUALLY causing this.

    I'm learning more and more that most doctors are very ignorant of the medical field as a whole, except for that little bitty area that they happen to focus on. But since there is more to a person's health than one little bitty area, that is not an effective way to treat a person. And sometimes standardized blood tests are not enough. They don't always pick up everything that is going on. That's why docs continue to research and develop new tests, new areas of focus, and come up with new conditions.

    My personal feeling is that there is probably something happening on a cellular level that causes all of our symptoms, and the docs just can't see it or find it yet. But I have hopes that someday they will develop the appropriate tests to be able to find what is going on. I hope! =)

    Good luck to you with your docs. Being that its Kaiser, I don't know if its possible for you to request a different doc or not. I hated Kaiser when I had it (which was at the beginning of my major FM symptoms), because the docs had no clue. With some docs, it helps to explain to them that it is YOUR body and you know it best, and tell them that something is wrong and it is NOT PSYCHOLOGICAL! Tell them if anything, it is the other way around. The physical problems cause the psych issues. Probably won't help, but I hope you can find some way to make the doc listen.