Discussion in 'Fibromyalgia Main Forum' started by memaw, May 15, 2003.

  1. memaw

    memaw New Member

    that doctors aren't more educated about our affliction. Most don't have a clue what to do with us. They don't know about the trigger points. I asked one doctor to check me and he just felt around like he was looking for a broken bone. I could tell right away he didn't know the criteria. One of the largest reasons these diseases need recognition is so we can find someone to treat us.
  2. coyote

    coyote New Member

    I saw a neuro...for the first time last week, and he thought my only problem was "a couple of different sleep disorders". yikes~ tell me something I don't know....I haven't slept well for almost 40 years.
  3. baybe

    baybe New Member

    If I can figure out how to advocate in anyway it would be to get across the fact that, the delivery of medical information through the particular culture of physicians we have at this point in time is our greatest battle. Somewhere, this disease is being researched and probably strides are being made, it is our local physicians and the mecical culture that disease that require time due to diagnostics, treatment and repeated office visits are just not lucrative. That is why we make their "heart's sink" there goes a waste of time, they know once we start we are good for at least 15 minutes or more, "cha-ching there goes there goes 2 to 3 available 7 minute segments.
  4. sydneysider

    sydneysider Member

    what we relly need is specialist doctors. The rheumies sure aren't taking it on. Thanks for the laugh though. I always try to see the comic side of things nowadays. It helps keep me sane, and best of all keeps my stress levels down.
  5. ahgatto

    ahgatto New Member

    I went to my rheumatologist yesterday (my second one in 2 years) and she told me that my requests for massage therapy, hydrotherapy and pilates training was ridiculous and without basis. After that I went looking on the internet and found that a lot of people use those to treat fibro. I am writing her a letter with my support. I am sure whe won't want to be my doctor anymore and I can't say that I want her either. For me it has seemed that the doctors just want to give me a drug and make me go away.
  6. memaw

    memaw New Member

    is true. I got copies of my medical records and each visit was 6 minutes or less. My family doctor is a sweetheart and very concerned about our health but he just doesn't know a lot about FMS. We haven't been using him very long and I hadn't mentioned much about my FMS because it was not giving me much trouble at the time. I took my husband to him last year when our doctor was out of town and later started seeing him myself. Honestly, my husband has been so sick that I've just had to keep pushing myself no matter how much I am hurting. You know we can keep going if we have to, but it is no way to live and then we totally crater. I know I am hurting myself in the long run but I don't have a lot of choice. When I can, I will find someone who really cares enough to study our problems and get involved. I don't want just a bunch of narcotics. I want real help.
  7. Bellesmom

    Bellesmom New Member

    After all, there are PA's and Nurse Practitioners. Maybe someday there will be folks trained in more specialties than the generalities available now.

    I would like some nice guy or gal that's trained to LISTEN for starters. Many of the medical people I've been to have canned answers to start with. They're not taught to listen, only to have a remedy of some sort (which is usually a pill).

    We have to remember that there are so many diseases that very little time is allotted in doctors' training for some (not all, of course) of them. And if any of them are like me they might not remember everything without referring to books which they may be too lazy to do.

    So, somewhere out there is an answer but maybe not in this generation of doctors (darn it).

  8. clueless

    clueless New Member

    I received a page from Newsweek from our pastor today with an article on fibro.They are doing some work on the disease and have at least gotten to the point where they know some trigger ( car accident etc. ) sets the disease in motion.Pfizer is developing a new fibromyalgia drug and P.Cypress Bioscience is testing another that boosts pain-suppressing norepinephrine and serotonin.Hopefully there will be some help for the younger ones who are suffering thru this as you raise children.I am past that time but can`t imagine how difficult it is for you. I was one of the over-achievers the article talks about who did`nt know enough to "slow down and smell the roses" once in a while.Now there is not much I can do with this disease.
  9. layinglow

    layinglow New Member

    Don't Settle for Doctors who will only give you 5-10 mins, who do not treat, and are not knowledgeable about FM/CFS.

    You are short changing yourself, and not getting the treatment you deserve.

    Seek out a Doctor that advertises, or states that he is a FM/CFS Specialist, that has a large client base of FM/CFS patients, is willing to schedule 30-45 minute appointments, and who is truly interested in these disorders and patients.

    They are out there. It does take searching, and sometimes a bit of a drive---

    I finally found one, after becoming determined, I would succeed in my search. I checked the Good Dr. List, here, and did an internet search for (Fibromyalgia Specialist *my state*). I worked very hard making phone calls and interviewing the office receptionist, and many times the nurse. I then narrowed the field. It is doable. I now have a D.O. who specializes in FM/CFS/MCS....I pay $65-$80 for 30 mins. to a hour. I have a doc who is wonderful--accessible, and treating me agressively. He is ontop of latest research, very knowledgeable, uses integrated medicine, so that I have the RX'es I need, as well as supplements, vitamins, and other alt. therapies. Each patient has their own individual treatment regime, as he understands the need for this in these DDs.

    Please, don't tolerate---poor treatment.

    Best wishes,
    [This Message was Edited on 05/16/2003]