Feeling pretty discouraged

Discussion in 'Fibromyalgia Main Forum' started by suzbee, Nov 15, 2008.

  1. suzbee

    suzbee New Member

    I haven't posted in quite a while. The information from this group and this site has made such a huge positive difference, for the most part. It has helped me come up with ways to treat myself with supplements, etc., and make it through the day without spending it in bed.

    But I struggle with one major thing when coming to this site: after seeing all of the diagnostic criteria so precisely laid out, and seeing the corresponding suggested treatments for each problem, and reading the scientific findings about what is causing the malfunctions, and looking at the new breakthroughs in understanding ME/CFS and fibromyalgia -- I feel like a prisoner who is having freedom dangled above me like bait, but it is just out of my reach.

    I can't find anyone who will do all the tests without arguing and moaning about it. I got a FEW tests after fussing, and some of the results fell right in line with what's in the literature on this site. At least I felt somewhat vindicated. But then nobody knew what to do from there, and were scared to death to try anything.

    Can't find anyone who will follow through and go far enough to prescribe what it takes to make a difference. They might go a little way for a little while. Or they may start in with some treatment on one small facet of the whole thing, but they don't follow up. There may be a few doctors within 100 miles of here who appear to know what's what and can do more than I'm getting now, but none of them will take insurance of any kind. Cash up front. It's a crap shoot, and I'm not up to driving a couple hundred miles round trip for more of the same.

    Meanwhile, after 12 years of this, friends and family keep saying, "Well, are ya better yet?"

    I am so tired. This illness has progressed from terrible pain, which has either gotten better or I've gotten used to it, to the cognitive losses so many of us complain about. I even got those documented by a neuropsychologist through half a day of testing.

    But yup, according to others, I am just a lazy hypochondriac who would be so much better if I'd just "get out there" and do something. I can't seem to remind people that when I came down with the pneumonia and pleurisy that started all of this, I was working full time, going to college, and heavily involved in church music. Yeah, lazy me. What I wouldn't give to get back to work and music!

    Why the heck can't I find someone who will just do the tests and follow through with the corresponding treatment as it is so neatly laid out by several organizations, doctors, researchers, etc.? It's all neatly laid out so any one with half a brain can see it, even a fog brain like me. A B C, 1 2 3. Is that so difficult? I know there's no known cure, but I'd sure like to be able to function!

    I'm not expecting any answers or any pity. I know we're mostly all in the same boat. I just wanted to stick my head in the room for a minute and say I was here.

  2. gotdirt

    gotdirt New Member

    I don't know where you live but go on the internet and pull up chronic fatigue and fibro health centers. they don't have them everywhere. I think las vegas, texas, and dr holtorf's office in torrance ca. yes they are very expensive and they won't help you with insurance. but give you a form to send in. but you can get a full work up. they read blood tests much different than other doctors. I went to 2 different support groups that really helped. I learned that I did not belong in the fibro group. I didn't have much in common. but when I went to cfs support group. It was like looking across from myself!! but what everyone I met in both groups shared the same story, "it took me 5 yrs ,or 10 yrs or 20 yrs, to be diagnosed. you have to get a least properly treated , and finding out what you have. I would go there just to get a plan going, then find another homeopathic doctor after that. If you have insurance it will pay for the blood test. which is extensive list. but the doctors visit and supplements will probably not be covered. and get tested for a hormone produced in your head called pregnenolone. I was low on that and when I took 100mg a day my memory improved. don't get it at any health food store.
  3. jole

    jole Member

    Just want to say that many of us understand exactly what you are saying! For the past 5 years or more I've been treated for FM and bipolar. I've gone to 11 different doctors, including 2 neurologists, a rheumatologist, psychiatrist, etc. Once I mention FM no one wants to do anything....mostly because no matter what tests they take nothing shows up as abnormal.

    But last month, I went to a controversial doc who actually said he believes I have Lyme Disease. Wow! After all this time! I was tested for Lyme, but it showed negative, which he said is very common, and is going by symptoms now. I finally feel vindicated!! My symptoms were so much worse than most people with just FM, and my PCP kept saying she felt there was something more going on.....just didn't know what.

    Now I need to find someone who knows about Lyme (I do also have FM since childhood) and see if there is a treatment program for me. What a waste of 5 years of my life!! No, they mainly hear only what they want to hear, and just can't seem to see outside the box.

    Wishing more for us all..***Jole***
    [This Message was Edited on 11/16/2008]