Patient Heal Thyself?

Discussion in 'Fibromyalgia Main Forum' started by elastigirl, Nov 18, 2005.

  1. elastigirl

    elastigirl New Member

    I saw my doctor yesterday. He listened patiently while I read off my list of supplements/prescriptions, any noted positive effects and side effects, then listened while I ended with a description of new symptoms.

    If anyone has been following my other thread, you'll know that I have been having many good days now that I'm taking a new supplement, and many of my old symptoms of CFS/FM are now receding.

    My doctor was impressed with what the supplement has done for me and said it should not be dangerous, but that we could do a blood test my "next visit" just to be sure my calcium levels weren't getting too high (at MY suggestion that the information could be useful.)

    One good thing came of my appointment. Due to winter clothing, heavy shoes and a hearty lunch, I had 'gained' ten pounds. So he immediately took me off Elavil and put me on a sleep aid instead. (By my scale at home, I have not gained an ounce -- but I hated the sugar cravings, so I'm glad the Elavil is gone for now.)

    He was concerned with my high blood pressure reading. (Last time I visited, he said it would take two high readings from two visits to be concerned, so this time he was concerned.) So I'm to monitor my blood pressure MYSELF at free stations at local stores. Then let HIM know if my blood pressure is still high.

    (I did not even think of trying the BP standing vs. sitting down. I'm reading here on the board that the reading taken while PWC stand can be much lower than when they're sitting.)

    I told him about my peri-menopause symptoms. My mom clued me in to this -- her symptoms were exactly the same. But she was in fifties; I'm only 38. So I brought this up to my doctor. He didn't seem concerned, but said we could test my blood my "next visit."

    My doctor didn't even seem the least bit concerned with what causes my CFS/FM. He didn't seem the least bit interested in adding my notes to his file. (Just like last time, he handed my notes back to me.) And, believe me, this is the ~best~ doctor I've found so far, so I'm not about to drop him. But still....

    I left disappointed. Basically, I had healed myself. Not fully, but enough to satisfy him. I felt dejected, like why doesn't anyone care what is CAUSING this? Do we have to keep screaming from the rooftops, "Please help us find out what is CAUSING this!!!!" I give up for now.

    Yes, I am very lucky to have big chunks of my life back. I am lucky my strength is coming back. Yet the frightened girl inside of me knows that the day I stop taking my supplement is the day I backslide right back into CFS. I know that I am NOT cured.

    In the end, I believe if I keep feeling well and get my life back in order, it will be my priviledge and obligation to help speak for those who are too ~tired~ to speak because they are debilitated by this illness. At least I can take that ~hope~ with me to bed at night.

    The sad part about all of this is that I found out from the receptionist my "next visit" is in SIX months! Patient, heal thyself? You bet. We may not have any other choice.
    [This Message was Edited on 11/18/2005]
  2. ldbgcoleman

    ldbgcoleman New Member

    It is sad that we have to take such an active part in figuring this out! It is very complicated. You sound like a fighter and thats what you need to be! Could you get a list of things you want to be tested for and give this to him along with the labs. EXP- Lymes western blot at Igenix labs, Thyroid Free T3, mycoplasma, EBV ect... Would he order the tests??? You could call and ask.

    I understand the frustration you wait until your next visit with the hope that the Dr will give you something and suggest a new test, anything, and they just don't. It is so disappointing. I feel very lucky to be at the FFC beacause they test for everything. I even did some cancer screenings and went and got a colonoscopy on my own to make sure I was at my optimum in every way!

    Good Luck and keep researching and working on this. your attitude is very important!!!! Lynn
  3. springrose22

    springrose22 New Member

    My Dr. said to me about two months ago, "People with CFS heal themselves." And, I will apparently. I have done a lot of research, learned a lot from this board, and next appointment will ask to have tests for Lyme, EBV, etc. done, and when the results come in I guess I will have to interpret them, etc. and work out my treatment. Should have gone to medical school. Marie
  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    My GP certainly isn't doing anything for me to look for treatments, or even to make useful suggestions. My env. doc has been able to take the edge off w/ allergy treatments, but not much else. At least she'll do extensive tests that actually show abnormalities.

    My GP requested a copy of the lab results for his files, and when he got them he didn't even look at them or discuss them w/ me. He actually made some stupid and baffling comment about my env. doc overwhelming him w/ paperwork (the results).


    Jeanne
  5. Jen102

    Jen102 New Member

    seems you are having to be satisfied with a "better than nothing" doctor with "better than nothing" medical treatment. I would be curious if I were you about what he records in your medical records after a visit. I have seen some very nasty behind the back crap. Hopefully nothing like "patient came in today with extensive notes (read "crazy") re unsubstantiated treatments--warned the patient not to view information from the internet which may lack medical basis. Patient is not watching her diet but has become obese." Man, you just never know. I have gone to a doc who assured me she was progressive, but she was patronizing me and I would have done well to get away from her much sooner. We have to be satisfied with so little as far as medical care. Sorry I sound bitter tonight--reading your note brought back some nasty memories. Jen102
  6. elastigirl

    elastigirl New Member

    ldbgcoleman -- my doctor ran standard blood tests for thyroid, B12, etc., but not any of the more advanced tests we know about here on the board. It's very frustrating. He acts as if he's run sooooo many tests (maybe four?,) I should be satisfied. He's not concerned with what's causing it. I'm lucky he was interested enough at all to suggest I had FM. (He won't say Chronic Fatigue, but I know from the symptoms list that it's CFS/FM.)

    Another member of the board suggested walking right in to Quest Labs and requesting our own tests. Myself, I'm becoming convinced my CFS is either due to a mycoplasma infection or mitochrondrial disease -- because of my supplement. It seems to elevate my pyruvate levels improving my Krebs cycle. The same supplement is not working for everyone with CFS. I'm not seeing a lot of responses on my thread. So I suspect I have a very DEFINITE cause which could be determined by testing -- if my GP was the least bit interested in helping me. Discouraging. I won't give up in the long run, though.

    I wish I could afford the FFC. But I know they sell their own supplements, and at the prices I've seen for the testing alone, I could not afford them. Sounds like a group that at the very least cares about it's patients :).

    Marie -- I'm glad your doctor will test you. I think the members on this board can help you interpret the results. Yep, we all need medical degrees :).

    Jeanne-in-Canada -- I'm beginning to wonder if doctors aren't starting to lean on the diagnosis of FM to say, "You're hopeless. I'm not going to risk insurance denial by running all of these tests. You have FM. (Unspoken: Everyone knows FM is all on your head. Get out of my office as soon as possible and stop bothering me, kid.)"

    jen102 -- I actually have a copy of my entire file (except my last visit) in my possession. It's sealed and supposed to go to the rheumy that I'm seeing late December. I know legally I'm supposed to have full access to my file. I want to take a peek -- but I'm a litle scared, you know? What if he's insulting? I don't know if I could handle it :(.

    Thank you everyone for reading my post and responding. I'm hoping all of us can work to change our doctors' mentalities about these illnesses. They just aren't doing their best. But we also have to work with the source of the doctors' woes, too. Insurance companies (even Medicaid.) We have to get them to change their attitudes, too, and we know how impossible that can be. Ugh!
    [This Message was Edited on 11/19/2005]
  7. bpmwriter

    bpmwriter New Member


    an old adage translated from chinese medicine that says the doctor's duty is simply to distract the patient while the body's own healing mechanisms take over and restore the patient to health. it's tongue in cheek of course, but more than a little true when it comes to these types of illnesses.

    eddie
  8. kgangel

    kgangel New Member

    Elastigirl,

    What an informational post. It is sad that we have to do our own research and try things on our own, like supplements, homeopathy drugs etc...

    Do be careful though with the high blood pressure. I tried a homeopathy drug that has been working quite well for people on here and it caused me to feel very hyper and I took my blood pressure and it was high, I have been monitoring mine since too.

    It is dicouraging that we do all the work to take care of ourselves and the doctors we trust get all the money and the glory, I am proud of you though, YOu have done a great job!!

    Keep up the good work , feel better everyday

    kgangel