what type of dr? do you suggest?

Discussion in 'Fibromyalgia Main Forum' started by jaynesez, May 4, 2009.

  1. jaynesez

    jaynesez New Member

    I was dx'd in 2006 by PCP with having FM & CFS who told me that the only thing that could be done was take vitamins and exercise, which I do; that being said, I have several issues that I've seen different docs over the years for. They copy my PCP, and even though I don't go to see him often (sinus infections, severe bronchitis) I think he believes I'm a hypocondriac(sp?), so I really need to find a dr. that can oversee my all of my health issues. I have a great pain mgmt doc for CMP, but I want to have one dr. who knows the whole story, not one who just looks at me funny and shoves me out the door (after waiting 45 min). What type of dr. do most of you see, i.e., a rheumy, a PCP, an Endo, etc. Thanks for any help you can give, am about at my wit's end here!!
    Hoping good health to everyone!
    Jayne
  2. TigerLilea

    TigerLilea Active Member

    I don't bother going to the doctor anymore with any CFS related issues. It's a waste of my time, and of the doctor's time, when we know that as of the present time there are no tests and cures available.

    I don't understand people who continually go from one doctor to the next hoping for a miracle. If there was something that could be done, we would have heard about it by now.
  3. hatbox121

    hatbox121 New Member

    I have different drs for different things. I have my PCP which also treats the FM in a pinch. I had a pain mgmt dr for SI joint/degen.disc disease but he has since passed me back to my PCP. I also have a rheumy.
  4. AuntTammie

    AuntTammie New Member

    There are not any cures yet, but there are treatments that can help improve some of the symptoms significantly for some people....also, having CFS does not automatically rule out getting other things....so it is important to have a Dr that you can trust, and one who is aware that you have CFS (bc it can effect types of treatments and how we respond to them, even for unrelated issues) and that Dr needs to believe that there is such a thing (and he/she has to be one who does not automatically decide every new symptom is a part of the CFS, thereby failing to even check into the possibility that there might be something additional going on that is treatable)...unfortunately, finding such a Dr is difficult to do....I think that holistic Drs tend to be better at not writing off patients with CFS and at being willing to try a bunch of different things (both mainstream and alternative)

    another reason that some of us still go to Drs, even for CFS symptoms, has to do with SSDI....if you don't have the "proof" documented that you have been to Drs and have tried various treatments, and that you continue to do so, then you will not be getting SSDI or will fail to have it renewed when it comes up for review....they tend to look at not going to the Dr as proof that you don't need one; not as proof that there is nothing that helps
  5. jaynesez

    jaynesez New Member

    to oversee treatment, and as Aunt Tammie pointed out, to document all the various issues I have that have been dx'd by different docs, as it's only a matter of time before I need to make some major change in my life. I also have FM, CMP, and had a spinal fusion in 2004 that left me with six screws and bolts, two rods, along with muscles that feel like concrete (they never released). I was showing symptoms of carpel tunnel, had to see ortho specialist and low and behold did not have CT, have Reynauds and PN. My pain mgmt dr. prescribes lyrica for the PN, and he's a great doctor, but he can only treat me for certain things, so you get my point. I see a gastro for IBS, chronic gastritis, etc. So, just basically looking for one dr. to keep these records and be AWARE of all my issues. I do not expect any miracles at this point, been dealing with this for years. It is getting very hard to keep dragging myself to work everyday, and I'm beginning to lose the use of my hands. As I said, my PCP whips in, whips out and gives me abx for yet another sinus infection, and that's it. Also, Rich Vank was kind enough to post treatment for methalation (sp?), etc. and I need to find a dr. who can oversee that treatment. Anyways, I thank you all for your advice, I guess I simply need to find a new PCP!
    Peace,
    Jayne
  6. ladybugmandy

    ladybugmandy Member

    jayne...if your illnesses started with a virus, you need to see dr. a. martin lerner in MI. in a few years, you will recover.
  7. skeptik2

    skeptik2 Member

    I have given up mentioning CFS to any dr.; I just tell them my most bothersome symptoms that are not being treated already, and they are good at trying to track down reasons for specific symptoms, thru blood or other tests.

    Your dr cannot answer to anything about CFS; if you will go to the post here about the last CDC meeting this past week, you will see why.

    How in the world have you worked this long, poor thing?

    I suggest you start right now writing down the name, address and telephone number of all your drs. If you have to apply for SSDI or any short-or-long-term disability, you will need them at hand.

    Then, keep a legal pad or wordprocessing list of each dr appt date/why you went/outcome. It can be submitted to SS and/or a judge if it comes to that.

    With all of your cumulative diagnoses, I feel you could get SSDI easily if you l)let your Supervisor at work know you don't know how long you can go on; 2)ask for "accomodations" to your job (a decreased working hours schedule? A lateral transfer to something less demanding), and 3) if that doesn't allow you to do "meaningful" work, consistently, without lots of absences and/or drs appts that interfere with your performance, then go out on short-term disability at once, if that's available.

    If short-term is not available to you, start saving money right now. Then let yourself get fired or outright quit due to inconsistency, inability to perform, absences, etc. Document it all!

    Wishing you the best,
    skeptik2
  8. jaynesez

    jaynesez New Member

    skeptik! I'm not covered by FMLA as we only have five employees, and if you see my other post on "how is your boss" you'll note that I am HEAVILY relied upon!! I have the same thoughts that you posted; I don't have short term disability, but am trying to save money for the long haul or rather, the long fight I may have ahead of me getting SSDI. Boss knows I'm beat up and down but the bottom line is he just wants the work done. I have decided to do what I can, don't worry about what I cannot do and if I get fired, well then fine! I am going to start collecting my medical records, starting at my PCP as they often copy him, then go from there! Thanks for the understanding, it is greatly appreciated!
    Jayne
  9. jasminetee

    jasminetee Member

    Finding a doctor who at least acknowledges how disabling CFS and FMS is really depends on where you are located. The way I found my doctors that I like well enough, (theyre not perfect but they are way better than most I've seen) is by Googling for "CFS and FMS Support Groups in _____________". Fill in the blank of where you live, first with your city name then try county, then try nearby cities etc...

    Next email any support groups you find and ask them for doctor recommendations. There is also a Good Doctor list here on ProHealth and there is are other Good Doctor Lists for CFS and FMS in Google. Now you should try spelling out CFS and FMS when you search as well as using acronyms, sometimes you get better results that way.

    Another thing you can do is start a thread that says "Good doctor for CFS/FMS in ________________." People may answer if they see the area you're in.

    There are some doctors that have some knowledge about CFS and FMS and they're the ones that have helped me get my Disability.

    Good luck and let us know if you need further help and let us know if you do find a doctor or two that you like.

    I found a PCP who went through training with Peterson and Cheney in the Eighties and I have a Rheumatologist who was able to perform the Tender-point Exam and diagnosed me with severe FMS.

    Btw, some of the doctors people suggested or from the lists were horrible to me and didn't believe in either disease. I finally started asking the secretary over the phone if the doctors believed in these diseases before I would even make an appt. That helped save me time and energy.

    tee


    [This Message was Edited on 05/05/2009]
  10. Empower

    Empower New Member

    I WAS seeing my PCP, but he was just shoving antidepressants on me. My pain went crazy this year, so I started seeing a Pain Management doctor

    She in turn has referred me to another pain doctor who I see in a few weeks

    This new one is supposed to have experience with FMS patients

    I was impressed that the pain management doctor recommended some things other than drugs such as water therapy

    We definitely need someone to look at the whole picture

    I know the feeling of the doc looking at you like you are a hypochondriac