I finnally got the truth

Discussion in 'Fibromyalgia Main Forum' started by deedeej, Aug 17, 2005.

  1. deedeej

    deedeej New Member

    Last visit to the Rhem. Dr.
    I asked him point blank Is there anything (other than another pills) that you can do for me?
    He told me to keep a positive attitude (even when your on the couch and can't move for hours) keep moving and take drugs so you can continue to move.
    SO i now get to become a pill popper for life and no ther is nothing else he can do for me.
    I just wonder why I had to drive 2 hours every six or so weeks for 2 years for nothing.
    Maybe if he would have told me that in the begining I would have given up hope that there may be some relief ahead.
    Now I will keep on trying to cope with this and try not to lose my sanity or my job.
    How do others manage to go to work day after day in pain???
    Or am I being totaly out to lunch in thinking that I can or can not work.
    My fear is that if I can't work then all I will do is stay at home with the pain.?
    Any hints on how to keep working would be greatfull.
    I am an Educationl Support Wortker for severe behaviour children and one thing they need is consistantcy.
    Even though it is not good news at least now I know there is no help for me unless I do it myself.
    Thanks for listening
    Deedeej
  2. tamsyn

    tamsyn Member

    Dear Deedeej

    Sorry you have had bad news from your rheumy; this is discouraging after you put in so much effort to see him. However, this is not a 'no hope' situation because of this news. Have you tried nutritional suplements? (I use Ambrotose AO and find it improves energy levels a lot.) Have you tried other docs? Have you tried a naturopath? How about meditation? I do an hour before bed and it helps a lot with pain and with stress. How about gentle exercise? Hot baths? Massage? I find massage very effective for pain. Some people like acupuncture for pain (I haven't tried it personally.) And yes, you may have to use some form of prescription medication for the rest of your life...this doesn't make you a bad person. It simply means that you need this help for a better quality of life. I have started Gabapentin and found it very helpful ...it can lessen pain. So, don't despair...there are lots of things that you can do to help yourself.

    Work is a very difficult issue and there's no question it's hard to be there for kids when you are in pain yourself....however, perhaps the bright side is that focusing on the kids takes your mind off yourself for a while (speaking from experience here.) Hope this helps.
    tamsyn
  3. karatelady52

    karatelady52 New Member

    Like you, I went to a pain specialist for 6 years. I've tried everything they had to offer -- accupuncture, massage, trigger point shots, de-stressing, and keeping a positive attitude.

    The only drug she would give me was Ultracet and after awhile, it didn't help the pain. I tried antidepressants for pain but it only helped a little.

    My doctor also told me my hormones were normal so she couldn't see anything wrong in that area.

    THEN, I found out about the Fibromyalgia and Fatigue Center in Atlanta (there are quite a few now in the U.S.)
    Many people fly in from all over.

    They took 22 vials of blood on my first visit! What came back was low thyroid, low estrogen, low progesterone, low testosterone, low natural killer cells and hypercoagulation.

    The best part is they tested me for viruses and Lyme disease. I have 3 viruses and tested positive for Lyme! At least now I can begin to heal and target the exact problems causing my FM/CFS.

    Some on this board have found doctors who will work with them and do the extensive blood work necessary to find these hidden culprits.

    Anyway, that's my story. At least now I have some answers to questions I've been asking for many years to no avail.

    Sandy
    [This Message was Edited on 08/17/2005]
  4. Dee50

    Dee50 New Member

    You can help yourself, believe me you can. This is a big blow to handle and I know it would make me very angery. This broad is a life saver to me sooo much information and support. Pain is no fun to deal with but....I believe you can beat it down. The hardest part for me was opening up my mind to new ways of handling my pain and listening to other folks in the same boat. One minute at a time. Don't give up!
    Take care,
    Dee50
  5. ldbgcoleman

    ldbgcoleman New Member

    I asked the same question and the response I recieved was find a support group. I walked out of his office that day and never went back. It made me mad and I decided to fight.

    Like Sandy I also found the FFC in Atlanta and I am doing better now than I ever would have believed. It has been worth every penny. There is hope and you can't give up. There are Drs out there who are doing the right thing.

    This Rheumatologist who will admit defeat has given up and failed you. Don't you let that happen. Get out there and fight for your health. Do whatever it takes to get better. It can be done. This is not a life sentence!

    Let me know if you need anything at all. I will be happy to help! Lynn
  6. Mother_Margaret

    Mother_Margaret New Member

    I notice they doctors doing the glyconutrient trials are picking things I would suspect to be caused by 2-butoxyethanol ... and they are finding amazing results

    The immune system (which has become autoimmune lots of things) is helped to function properly by being given the sugars they would normally make for themselves, and then the little whiskers for the immune cells that help in cell to cell communication - helps the immune system functions more like it should. Amazing results in weeks says Dr. Patrick Garrett of Kansas ... in diabetes, in cerebral palsy. I've heard also of a trial in lupus where people were helped.

    check page bottom here:
    www.valdezlink.com/acute.htm

    Pass it on to your doctors please
    Maybe you can be in a trial?
    One in scleroderma is starting up now
  7. razorqueen

    razorqueen Member

    could you share abit more about what kind of treatment you are on, that kind of thing? I live in Canada and as far as I know there is no such treatment centre available, and the ones in the states are too far away for me, even tho I live close to the international border. They need one in North Dakota!
  8. razorqueen

    razorqueen Member

    bumping for Karatelady!!