Do you tell a new doctor about your FMS/CFIDS?

Discussion in 'Fibromyalgia Main Forum' started by livin4him, May 16, 2006.

  1. livin4him

    livin4him New Member

    I am in the process of trying to find some new doctors. And I have done it both ways, it just depends on what kind of feel (energy) I get from them. Because I have not been able to find a good FMS/CFIDS doctor where I live yet, most of them just give me that look. Except for the FFC doctor.

    So, I am going to a cardiologist, should I tell her? Or just tell her symptoms and see what she can come up with?

    Thanks to anyone who has any input.
  2. place

    place New Member

    I do not tell doc's I have it unless, that's what I am seeing him for. Only if he questions my long medication list do I give an explaination.

    Even my GP (who is my cousin) gave me the, well that's a waist basket dx.

    He acknowledges the DD but he has his doubts because they cannot find a cause or a means to test for it. He is a really science guy at heart!
  3. Marta608

    Marta608 Member

    .... I don't lie. I say that I was diagnosed with CFS at the University of Ann Arbor Hospital.

    I know the temptation to want an entirely new opinion but then we risk having to take the same tests over again - usually with the same result.

  4. chickadee

    chickadee New Member

    because all of the registration forms, etc. that I have filled out recently for the hospital and for new doctor's office have cfs and fibromyalgia listed and ask if you have it.

    I don't think I have had anyone doubt me or think it's not real. They are reluctant to diagnois it because they don't know what to do about it.

    I have been seeing my hematologist for 20 years and he was well aware of the pain and agony I was in. (I see him for ITP). When I finally got FM diagnosis from rheumy, I told hematologist what the rheumy said and he told me he thought that was what I had but didn't want to make the call.

    I think "they" think if they keep telling us long enough that there is nothing wrong - then there won't be anything wrong. I tried to believe that myself for way too long. I may have been better by now if I had known.

    Recently had to see a new PCP and I told her that I had FM and she offered me phone number of support group and said that "they suggest exercise for it". I told her that they suggested that because "they" didn't have it.

    Anyway, maybe I just don't feel the negative vibes but that's my take on telling. Surgeon who did my heart surgery told me going in that I would need more pain meds and probably for a longer time because of fibro - so evidently he believed.

    Sorry for the book.

  5. livin4him

    livin4him New Member

    It helps alot to hear about others experiences. I'm not sure what I'll do, I think I will play it by ear and see what responses I get.

    Thanks again to everyone.
  6. Roseblossom

    Roseblossom Member

    Good answer to "they suggest exercise for it".

    You answered "they suggested that because "they" don't have it."

    Made me laugh out loud when I read that :)

  7. Lolalee

    Lolalee New Member

    If you think you may have to apply for disability now or in the future, it is very important to have a "paper trail". I think one's credibility could be questioned if your doctor says "oh this patient never complains about muscle pain or fatigue or has indicated they have FMS and/or CFIDS". I know you run the risk of being judged when you tell a doctor about your having FMS/CFIDS, but I think it's important to keep all your physicians in the "loop".

  8. rbecca47

    rbecca47 New Member

    I always tell, the last doc i visited had fibro. on the list of illness. So far i really only had a few negative responses from telling. and that was from nurses not doctors. but it is a personal choice. but i find that telling a new doc. I won't have to go through all the test, and rule out other things first. my doc did that before she dz this DD. so the to tell is up to the individual. good luck in your search for a new doc.
  9. Lolalee

    Lolalee New Member

    I recently went to a new doctor because of a thyroid problem and a lump in my armpit. After he had finished his exam and written a script, I asked him if he treated patients with FMS/CFIDS. His specialty is internal medicine.

    He said no, but this is your lucky day. He then proceeded to tell me about a female physician who just moved to my area from Birmingham. She was the head of FMS/CFIDS treatment at the hospital where she worked and is now in the process of establishing a new clinic near me.

    If I had not been honest with him and asked him about FMS/CFIDS, I would not have found out about her.

    You just never know.

  10. NyroFan

    NyroFan New Member


    I tell every doctor I have FM/CFS so they know how to more easily diagnose whatever problem I am having.

    I would rather have them know that I am very sick. They seem to treat me better.

  11. mom4three

    mom4three New Member

    Didn't tell my last neuro and he said all the sx were in my head.
    So mad...
  12. Michelle_NZ

    Michelle_NZ New Member

    Hi livin4Him

    If I am seeing a new doctor or specialist (and I've seen quite a few lately) I always ask them before hand if they have had experience working with CFS.

    If they haven't I try to find one who has.

    Fortunately my GP is one of the countrys leading CFS specialists, and she refers me to specialists who believe / treat / understand CFS.

    Take care

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