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Doctor Does Not Understand

Discussion in 'Finances, Work, and Disability' started by Sparrow, Jan 19, 2012.

  1. Sparrow

    Sparrow Senior Member

    Just needed to vent for a moment to people who would get it.

    I had an appointment with a neurologist today. One of my doctors wanted to do a nerve conduction study just to make sure there was no other reason for the severity of my limitations. Seemed like more trouble not to do it than it was to go, so I went.

    It went better than many medical appointments, which is a sad statement. She basically said that I couldn't have CFS (my diagnosis...they don't tend to use "ME" here at all), because all the people she's seen with that "look like normal people" (I am wheelchair bound right now).

    Then, after I had answered her questions and explained the super-bad effects of pushing too hard, she proceeded to imply that I "need to just start exercising sometime" and that would make everything better (pushing through to try to keep exercising before I knew any better is a big part of what crashed me out so badly in the first place - the point that I stopped pushing beyond my limits was when I started to get better rather than worse), and implied very strongly that if I was just more motivated then I would be fine. And then, to put the icing on it, she very strongly implied that if I had children, then I would be better by now.

    Because, clearly, being trapped here missing out on my life is what I most want to be doing right now. And clearly, I am not an uber-motivated person. And the fact that children have been out of the question because I'm too sick surely isn't a sore spot at all. And somehow even though I was very active, it's my lack of exercise that suddenly caused me to become bedbound last April? Really?

    I just want to be able to stay away from all of them, and just live my life, and use what guidance I can get via the doctors actually working successfully with ME/CFS patients, and continue to heal. I wish they would all just leave me alone. Hearing crap like that makes an already awful situation just so much harder.

    And without a real specialist in my corner, every forced interaction with a medical professional just makes me cringe in case somebody decides to send a note to my insurance that says I need to be on a regime of exercise, or something. They're current treatment recommendation on file is to have me institutionalized. No joke. Thankfully, my family doctor didn't feel that I was a threat to myself or others so refused to follow up on that. So far. I hate feeling like I'm living in constant fear of what my insurance provider will assume, or decide, or misunderstand, at a time when I rely on those payments for survival. Such a frustrating and helpless position to be in.

    It's a truly horrible thing with all we go through that we have to face this kind of thing on top of it all. And I know you all know that. Which is why I wanted to let it out here. Thanks for listening.
    roxie60 likes this.
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    I have been lucky with my doctors. It would be awful to have to hear you need to exercise. I can't believe what your doctor has told you. Horrible.

    I just get the best help from my integrative MD. so I feel good now.

    If a doctor has no clue, I just leave and find another. I hope you can keep looking and find a great doctor.
  3. Sparrow

    Sparrow Senior Member

    Thanks for the support. I've been doing okay in self-treating. I have seen an integrative doctor as well, but he isn't someone my insurance company would respect. It's just having them hanging over my head that makes things difficult. I don't think I would care so much what opinion doctors had if I felt like I could just walk away and ignore them if they weren't good for me. The insurance situation and the lack of a good solid (and well-informed) advocate makes that difficult right now.
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    The average result for long term detriment from exercise in ME is 51% of patients according to the patient surveys. According to PACE the average number of adverse events in a short period is 5 per patient (rounded down) but they dismissed most as nobody went to hospital. There is NO objective data that shows a sustained functional improvement from exercise - instead it shows either no improvement or a decline. PACE, the largest trial ever, had a small improvement for a small percentage of patients, and they failed to use proper objective measures. The exercise physiology shows we get worse from exercise in a whole lot of different ways (but that same research is looking at ways we might be able to exercise). There is no good story on exercise, its not evidence based medicine, its spin.

    Bye, Alex
  5. waiting

    waiting Senior Member

    Sorry to hear about your appointment, Sparrow. You likely already know this info, but just in case not, please see this previous post of mine (it's post #7).
  6. justy

    justy Donate Advocate Demonstrate

    Hi Sparrow, such a familiar story, and so sorry you are having to go through this. We cant win really because either we are sick because we are not motivated enough or sick because we are overly motivated people who do themselves in. Its a horrible situation to be in and i feel so bad that so many of us are facing this crap day in day out.
    sending :hug: I hope it helps, Justy.
  7. LaurelW

    LaurelW Senior Member

    So sorry to hear that, Sparrow. As if we didn't have enough to deal with! Whenever I go to a doctor in the future, I'm going to take a brand new shiny International Consensus Criteria and show it to the doctor if they don't toe the line. Doctors like that are just going off of old information that has been completely disproved by now, which shows that they aren't keeping up to date on research.
  8. snowathlete


    Sparrow, im sorry you had a crap appointment. The doctor doesnt know what s/he is talking about, simple as that.

    Uh.......wrong! I have an eleven month old, conceived while i had ME/CFS and i have that diagnosis by the way: ME/CFS - so i cover both bases. It hasnt made me any better (obviously). Next time your met with a comment like this try to remember to ask the question: "What medical facts are you basing that on?" gets them everytime, because of course, its not based on medical fact at all - not even medical guess, i mean, its so ridiculously illogical!

    Well, anyway, i am mad on your behalf.

    One day, people will look back on our illness and say, "What were these doctors thinking?". My grandpa has ashma, had it from an early age. They treated him by putting him in a room full of smoke. Thats what the doctors said would make him better. Now of course we look back and think, "you've got to be kidding me, were they stupid?"
    Well, probably they were, but at the time that was the medical opinion. Doesnt change the fact it was barmy though does it. Well, all i can say is that people will look back on our 'treatments' in 50 years time and take a similar view. Not much consolation i know, but still.
    ahimsa likes this.
  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Sorry to hear you had to go throu that crap sparrow... esp the part about the children. My child had to become my carer and a constant baby sitter for my other child. I suggest to try to take in some info on our illness to that doctor which talks about how severe it may be.

  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    sorry to hear to sparrow, move onto the next doc or just try and work out some more things with your current doc you said was ok. The problem is no doctor has the answer, sometimes we are alot better off with an intergrative doc, many specialists have a very narrow view of things and cfs or me arent in them. I hope things improve.

    Sallysblooms likes this.
  11. Gavman

    Gavman Senior Member

    I think we should only have to account for ourselves to ourselves. Some people love telling others what to do and its just irritating.
    Having CFS and being an introvert, i dont always answer my phone for calls asking if i can do shifts. The thing is, i still get plenty of calls about shifts but people sometimes bring it up. I dont want to be at peoples beckoned call all the time so i get back to people if i can work, otherwise i dont always call back. Did i murder anyone? Did I spit on a grave? Its just personal preference, if people are so codependent they can't handle it well thats their problem. Of course i still worry and berate myself about it but its nowhere near the top of my to do list.
  12. Kati

    Kati Patient in training

    Sparrow, if you contact the National ME/FM Action with your dr's contact address, they will send him/her a copy of the Canadian Consensus.

    You can also copy the new ME ICC and give it to him/her.

    Your dr is in terrible need of education, however they eel very threatened when it comes from patients. The bad news is unless a physiciain digs deeper, stays away from the CDC crappola information, and seeks advice frmthe experts ( Peterson, Klimas, De Merleir, etc...) chances are he/she will remain ignorant for many more years.

    our canadian could do much more in helping this situation. thingis there areover 411 000 of us in Canada with this disease and less than 1000 who have adequate health care.
  13. roxie60

    roxie60 Senior Member

    Central Illinois, USA
    Is there a link the this Internation Criteria??? I will try to google to see if I can find it.
  14. roxie60

    roxie60 Senior Member

    Central Illinois, USA
    heaps, at what point does it become pointless to keep seeing Drs who poke, prod and expect payment but you get no closer to understanding the problem or getting healthy....and it takes so dang long, years. How many have died trying to find Drs that care enough to learn what they do not understand or at least find a colegue that understands and give referrals. I'm coming up on 4 yrs with my integrative Dr and I'm asked why I stay with her, I say at least she listens and although it seems like a snails pace she does keep trying to help me, most Drs did more harm to me. Sad it comes down to not who is helping me get healthy but who is harming me the least....
    taniaaust1 likes this.
  15. sianrecovery

    sianrecovery Senior Member

    Manchester UK
    So sorry Sparrow to hear of the dehumanising and ignorant treatment you have been exposed to. It makes me both furiously angry and deeply sad. My friend Nisha who hung herself a year ago had had a number of similar consults in the weeks leading up to her death, and I think she just couldnt take anymore of the disbelief and mad making statments. Well done you on not letting these bastards win. I try not to swear on PR, but sometimes....
    You are not alone.
    Sparrow and jeffrez like this.
  16. Marlène

    Marlène Senior Member

    Edegem, Belgium
    hope you have found a more comprehensive doctor since.

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