New Member......HELP ME

Discussion in 'Fibromyalgia Main Forum' started by foggygirl, Mar 10, 2006.

  1. foggygirl

    foggygirl New Member

    First of all, thank you all for being out there and sharing your experiences. This is been the brightest ray of hope I have yet to see. THANK YOU.
    After months of tests & useless referals,(one doc, an internist, said he couldn't help me with my fatigue but would gladly give me a colonoscopy) I was finally dx'ed with CFS. At
    first I was thrilled to have finally found a diagnosis, then he acted as if it were all in my head, said my symptoms were caused by anxiety and depression, and to go back to my normal activities. Yeah sure, I'll get right on that. To make matters worse, he told my private disability insurance company
    that there is no reason for me not to return to work full time. I put in 12 hour days & normally drive about 500 miles a
    week meeting clients. I have had several near-accidents driving while in a "brain-fog." When I explained all this to him, he said that there is no reason people with CFS
    should not be able to have a perfectly normal lifestyle. Oh, and he said to get a lot of exercise, too. That's interesting, since calling him an idiot and storming out of there was enough of a workout to make me go home and sleep for 10 hours.
    So now, thanks to Dr. Idiot, my disability checks have stopped coming and the few wakefull hours that I have are consumed with fighting the ins. company. As I'm sure is the case with many of you, stress is the #1 trigger for having a crash day.
    I have an appt. with a different doc in a couple of weeks, but I'm so afraid it will be the same thing all over again. How do you make your dr's listen to you? How do you get it across to them that you may seem fine at the moment , but because of the exursion of getting ready, going to your appt. and driving back home, you'll be in bed for a day & a half?
    I live in PA. Can anyone recommend a dr that isn't an idiot? I get so sick of hearing that it's all in my head. And even if I can find one that believes me, they are'nt willing to help me with the insurance companies. Anyone have any suggestions?

    It's been such a help just reading all of your messages and realizing that I'm not the only one dealing with this.
  2. kaiasmom

    kaiasmom New Member

    You have an idiot doctor. There are so many out there. As if we choose to not be able to get out of bed? I can think of so many things I would rather be doing!!

    All I can recommend is to keep trying - one doctor to the next - till you find one that belives in your condition & is willing to acknowledge & treat it.

    I know it's not much consolation, but I'm pretty sure all of us have been there at one point or another - and many are there now.

    I hope you find a doctor that will take care of you!!

    In the mean time, take care of yourself!

    Take care,
    Leanne
  3. pemaw54

    pemaw54 New Member

    writing down everything that is going on with you so you dont forget when you go. I went to an idiot dr and only went to him the one time. There are wonderful drs out there, you just have to find them. We all are going through the pain, fatigue, and brain fog. Hang in there and let us know how the visit goes. I will pray that this is the one who will understand!! Dont give up on the insurance. Tell the new dr how important it is that he write a letter or fill out forms to help you get it reinstated

    Suzette
    [This Message was Edited on 03/10/2006]
  4. ma2alex

    ma2alex New Member

    I would have to recomend the FFC. There doctors are trained to work with fibro and CFS patients only. They understand and will help. The only drawback is that they are out-of-network for all insurance companies, so it may end up costing you quite a bit. To me, it is worth it, as well as the drive. You can find more info about them at www.fibroandfatigue.com
    Hugs and support,
    Dawn
  5. jakeg

    jakeg New Member

    I did a google search for you and have pasted a link for a doc search for PA. I hope this helps and that you are feeling better soon soon.

    Doc shopping just plain SSSSSSSSS, I went to 3 different ones before finding one, actually I found 2 rheumies that are very good with FMS

    One of these docs is from the list that this link will take you to.


    http://www.co-cure.org/USA_PA.htm


    Jake
    [This Message was Edited on 03/10/2006]
  6. hopeful4

    hopeful4 New Member

    I don't think you can make a doctor listen to you when they are close-minded.

    I think it would be helpful for you to go to an FFC, Fibromyalgia and Fatigue Center. If you aren't familiar with them you can learn more at their website: fibroandfatigue dot com or do a search here for FFC. Many of us have been helped.

    They run a lot of lab tests. They often find that those of us with CFIDS/FM have underlying infections, hormonal imbalances and deficiencies, hypothyroidism, immune system dysfunctions, heavy metal poisioning, candidiasis, and many of us, self included, have lyme disease.

    These lab tests and the doctor's evaluation provide a basis for your diagnosis and treatment.

    My doctor wrote an extremely detailed letter on my health to help me with obtaining Social Security Disability. Once you have the labs and diagnosis and treatment plan, this can help you very much with your work, disability, and insurance issues.

    Here are the FFC Centers that are now open. Call toll free 1-866-443-4276

    Amarillo
    Atlanta
    Cleveland
    Dallas
    Denver
    Detroit
    Ft. Worth
    Las Vegas, NV
    Norwalk, CT
    Philadelphia
    Pittsburgh
    Salt Lake City
    Seattle, WA

    Best wishes,
    Hopeful4
  7. tandy

    tandy New Member

    Cute name :)

    I would surely be looking for a different dr.!
    your doc sounds like a moron!!

    Lots of exersize??!! it sounds like your getting plenty just working full time!! I applaud your determination in working ANY amount of hrs.
    Can you appeal or file a reconsideration for disabilty??
    if so,...I would do that.
    Don't take no for an answer.

    Alot of us here (with persistance) have been approved SSI,and or disabilty. Many are turned down at first but fight the system and win.
    Have you tried a pain dr. or Rheumatologist? I think they are more likely to understand how disabling CF and fibro can be.
    Wishing you loads of Luck~
    and wellness,
    Tandy
  8. foggygirl

    foggygirl New Member

    Got some great info from you all. I'm checking out all the sites you suggested and I'm feeling so much more positive about things. What an awesome support group :)

    (My exclamation key is broken, so I'll just have to use a lot of smiley faces)

    If anyone missed julehan's memo on soc sec form for judges, its a must read. I'm going to take a copy of it to my new doc.


    Thanks,
    foggygirl
  9. dragon06

    dragon06 New Member

    Whereabouts in PA do you live? I have a list of friendly docs and some are in PA.
  10. foggygirl

    foggygirl New Member

    I live about 30 miles north of Williamsport, but I'm willing to travel for the right doc. My daughter & her husband live near Altoona, thats where dr. Idiot is. Am not able to work right now, so time and distance isn't too much of an issue. My wonderful & supportive kids have been great at being chauffeurs.

    foggygirl