My sleep study results / ways to make it work with your doctor

Discussion in 'Fibromyalgia Main Forum' started by jaltair, Oct 19, 2005.

  1. jaltair

    jaltair New Member

    I received the results of my sleep study this a.m. at my doctor's visit; I have no problems related to sleep. The doc was surprised. I think she was confident that sleep problems where the source of the chronic fatigue that I have. I think I was even hoping that I could find something as easy as a CPAP to relieve my fatigue.

    My doctor is sending me to Stanford Medical Center in CA for further neurological follow-up that will go beyond the sleep study. The doc left it up to me, and between the two of us, we decided that having the neuro work-up would be beneficial to either find a cause or rule out neurological problems. It should be interesting. I don't have the appointment set as yet; the staff at the doctor's office are setting it up and checking to see if my insurance will cover. I'll let everyone know what I find.

    My doctor told me that the chronic fatigue may simply be just that, it may be something intrinsic to me. We discussed the causes of CFS, and she firmly believes that CFS is from FMS. In fact, she believes they are one in the same. She told me that the pain that is related to the FMS is what she believes causes the fatigue as the body tries to deal with the stressors. Of course there are more stressors from FMS than just the pain. As I stated previously, my doctor is an internal medicine specialist and is also board certified in infectious diseases. This has been helpful, as she has really ruled out all infectious disease as a cause to the FMS. The doctor that I go to is probably in her thirties, very energetic, and very astute and knowledgeable.

    I wanted to share this information with all of you. I had heard before and had read other theories that FMS and CFS were in the same league. I still think different things trigger FMS/CFS for different people. However, that's why it's still a syndrome, there is no actually known causes. Once something is determined to "cause" the symptom/problems, then it is no longer the syndrome, it becomes the problem. Therefore, in true FMS/CFS, no actual cause can be found, at least not at this time.

    I think that's why I still search for reasons; i.e. going to Stanford. I want to be sure there are no known cause found and that it is true FMS/CFS. In this, the doctor agrees.

    My doctor agrees with the idea that whatever relieves the symptoms go for it. She is not against chiropractic (and I do go for my neck problems and arthritis) or any other type of holistic treatment. I feel very fortunate to have this doctor; we have developed a good relationship and have sort of a "partnership" in my treatment.

    I hear so many people on this board and about how they get discouraged with their doctors.

    I would encourage people here to work with their doctors to develop this type of relationship. The major thing that will make it work is for you as a patient to be totally honest.

    At first, my relationship with her was a little rocky as I was fairly impatient and didn't think that she understood things adequately and that she wouldn't listen. I was persistent, continued to go to her even though I went to another doctor as a "backup" in case I left her care, and finally, what really impressed me was that she stated, "I just don't know what else I can do, you are beyond my expertise . . You need (specialty services only found in a teaching hospital like Stanford)." It actually took a good three years of going to her before I reached this point. So, the moral of this story is to stick with whom you go to and make it work.

    Don't get discouraged, or if you do realize that the doctor also gets discouraged - again, be honest with your doctor. My doctor had to learn about FMS/CFS along with me; no doctor is an "expert" in this area of such vague disease. Each doctor can only be their own made "self expert" as they treat and learn about what's going on with their patients.

    Warmly, Jeannette
  2. CAAnnieB

    CAAnnieB New Member

    Hi Jeanette,

    I see from your other post that you are going away for a bit. I do hope it is a wonderful time of rest & relaxation for you. It's so hard to be in a LONG flare, isn't it? Hang in there!

    I'm sorry to hear that the sleep study did not show any problems...(That sounds weird!) Well, what I mean is that my study showed problems, I've been on my CPAP for a month & it has made a HUGE difference in my FM symptoms. It has helped me more than any other treatment. Of course, I'm still dealing with baseline Fibro stuff & I'm not cured, but any improvement we get is appreciated! At least you had the study & have eliminated that component.

    Just a note about Stanford...I don't want to discourage you, but I feel compelled to share my experience with Stanford. My wonderful Family Dr. is also a fine, humble man who admits that most Dr's do not know what to do with us FM/CFIDS patients. In 2003, I had reached the worse pain, etc with my FM. My Family Dr. said the same thing as your Dr..."Let's get you to the "big guys who should know the most about treating your pain"...

    I chose Stanford after researching the "biggies" in the area...UC Davis, UCSF & Stanford Pain Clinics. Well, I won't go into all the details, but my experience being treated & hospitalized by the Stanford Pain Clinic was awful. I went to them thinking they would be the best, and actually my experiences were so upsetting, I think for awhile I was very traumatized by it all! (This is not just my opinion...Other Dr's since then have agreed with me.)

    I also recently went to a Gastroenterologist at UCSF because my local GI Dr. was stumped after years of treating me for Chronic Gastritis. Well, again...I anticipated seeing one of "the best" & that appointment was just the pits!!! In fact, the Dr. never examined me, nor did he read my history sent to him by 2 Dr's, & I believe he has misdiagnosed me! He says I have Severe IBS...I really doubt that diagnosis. I also disagreed strongly (along with my local Dr's) on his recommended treatments!

    What I'm getting at is this...Just because you are going to Stanford does not mean you will find someone who knows very much at all about FM/CFS. In fact, when I was at Stanford's Pain Clinic; & they told me the majority of my pain was from FM; I asked who at Stanford is the expert on FM (I was thinking maybe a Rheumie?)...They said noone, just keep coming to the Pain Clinic!

    I DO hope that you see a good Neurologist! Perhaps this consultation is just to rule out any Neurological disorder? If that is the purpose, then I'm sure they can do that. If you find someone there who knows TONS about treating FM/CFS, I'd be surprised.

    Good luck to you. I guess I wanted to share my experiences with you because twice now I've gotten my hopes up that these wellknown, prestigious facilities would help me out; and twice I was let down majorly. I pray that you see a compassionate Dr. who is a good listener & who can diagnose you accurately.

    Enjoy your time away! Let us know how the Stanford appointment goes. I really hope your experience is not like mine! And hang on to your Dr.! She sounds like a gem! :)

    Blessings & Hugs,
    Annie
    [This Message was Edited on 10/20/2005]