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ME or CFS? What do you tell new docs?

Discussion in 'General ME/CFS Discussion' started by minkeygirl, Feb 4, 2014.

  1. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I have an appointment next week with an Immunologist. My Rheumotologist won't treat me until she knows why my immune system is weird.

    Do I say I have ME or CFS? I'd prefer ME but do doctors even know what that is? Obviously most know what CFS is but what do they think about it?

    To explain ME as a neuroimmune disease gets a bit harder for me since I can't put 2 sentences together coherently.

    If I'm seeing a doc where it's important for them to know, what do I do?
  2. SickOfSickness

    SickOfSickness Senior Member

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    I would probably be upfront with a rhemy. I think they understand us more than most doctors.

    Some may be great and understanding, and some bad. If the rheumy is bad, can you see a different rhemy?

    I would use language they understand in their speciality, like inflammation and joint pain (but being more specific) and anything you were diagnosed with (that they deal with) or abnormal blood tests.

    I would probably put "CFS" but make it seem like I was there for other reasons, if that makes sense.
  3. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    That wasn't really my question. Do I tell a doc that I have ME or CFS?

    (I told Rheumy (who I was seeing for psoriasis) ME and she had a questioning look on her face).
  4. rosie26

    rosie26 Senior Member

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    Tell your doc you have ME.... if he/she looks confused then say ....CFS. That's what I do. After they have "got it". I usually revert back to saying ME during the conversation. That way he will get familiar with the term ME if he is not familiar with it
  5. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Thanks @rosie26. That's what I was thinking. We shouldn't have to of course.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Why not say Myalgic encephalomyelitis and hand him/her a print-out of the abstract of the International Criteria: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

    It is pretty clear.

    Sushi
  7. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    You have to take the path of least resistance. No doctor is going to read an abstract during an appointment. IMO, and most likely will throw anything I give them in the trash on the way out (sometimes while I sat there).
    Gandalf likes this.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've done this (I highlighted a couple of sentences) and they read it--guess I was lucky!

    Sushi
    Valentijn, beaker and SOC like this.
  9. AndyPandy

    AndyPandy Making the most of it

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    I now make it a habit to give a copy of a pamphlet explaining what ME/CFS is to every doctor, alternative health practitioner and pretty much much anyone else I deal with, including relatives, friends etc. With doctors and the like I usually say "before we start I'd like you to read this which helps to explain what ME/CFS is and how it affects me." This has worked well for me so far.
    Valentijn likes this.
  10. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I used to do that. It wasn't worth the effort to print stuff.
  11. TigerLilea

    TigerLilea Senior Member

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    My GP told me to "never" tell a specialist that I have CFS/ME as they wouldn't take me seriously. So I don't mention it. I just give them a run down of my symptoms and let them diagnose me without prejudice.
  12. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    @TigerLilea I agree with that unless it is relevant to what you are seeing someone for.
  13. Andrew

    Andrew Senior Member

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    I didn't tell my current primary physician until I had seen her for awhile. Then I said "someone suggested I have CFS." She immediately referred me to a rheumatologist.

    I wrote out a careful and accurate description of my symptoms . About half way through the Rheumatology exam I told him my PCP wanted an opinion regarding CFS. I did this because that's why she sent me. He said the NIH definition says I have to have tender lymph nodes, so he doesn't think I have it. He is obviously mixed up about how many of the symptoms are required. But I didn't argue. And with my primary care physician, I never brought it up again. I don't see what good it would do me. It has never done me one ounce of good in the past with other doctors, and sometimes causes me problems. The only reason I brought it up with my PCP is I had been with her awhile and I felt I should at least mention it.
    SickOfSickness likes this.
  14. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I had to because I'm on disability and get reviewed every 2 years. Also, if I ever want to get home care, then I have to be assessed and they have to know.
  15. TigerLilea

    TigerLilea Senior Member

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    In this case, then, it is necessary to advice the specialist so I would say that I had CFS as you want that noted on your file and you want a term that everyone will be familiar with.
  16. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Good point. I hadn't even thought of how it would impact my disability.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i saw a doc last year as a one off as i couldnt get into my normal doc/s. I wasnt going to say anything but then he asked me about my medical history which i just couldnt lie. I said i have cfs , followed up quickly with im not crazy, he sort of half rolled his eyes and then realised i was 50kg heavier then him. how emabarrassing getting beaten up by someone with cfs lol??? anyway i said i have alot of immune abnormalities and rattled them off and mention the cfs study i was in at griffith university. Then i said i just wants some antibiotics for my sinuses. He said ok then, gave me a quick check over and a script. I think alot of these docs have a picture in there head of a middle aged yuppy coming to whinge and wine?? not this black duck.

    I think we have to go in confident that we know whats going on and straight out ask if they can help. If they start down the track of antidepressants and cbt crap then just say no thanks and walk out.

    Its hard dealing with new docs as we just dont know where they stand on this cfs stuff?

    good luck.
  18. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Yeah. It's so hard. I had a doc (my old one left the practice) who spent 20 minutes trying to back me into a corner saying I was depressed. I called him on it and he looked shocked that i was on to him. That was my last appointment with him.

    A big part of my problem is that my brain doesn't work on a good day so being intelligent and spouting off lab results just doesn't happen. And how many docs have I seen that see my labs and tell me all my results are in normal range.

    My thing was differentiating between CFS and ME, which I think I have.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont think there would be many docs at all that could differentiate between the two?? I would just maybe ask them to look at your whacky immune labs and ask for their opinion on them, dont even mention cfs/me for awhile in your consult. Just see where their at. Dont tell them u have cfs or me but ask them what their take is on them first and how they treat them. generally speaking labs are suppose to be normal for cfs/me so if u have abnormal labs u will have them backed in a corner. hopefully u have a cfs/me sympothizer.
    SOC likes this.
  20. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I feel like maybe once someone would say Oh yeah that sucks.

    My immune numbers were off. My PCP doc said all was normal yet the rheumy I just saw knew they were off.

    They look at my viruses and just say "oh, everyone tests positive". My doctor told me she doesn't "believe" in the virus part of it.

    I just don't try anymore. I'm tired of fighting with idiots.
    heapsreal likes this.

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