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Reality of my ME/CFS

Discussion in 'General ME/CFS Discussion' started by kristysmiles, Jun 3, 2014.

  1. AndyPandy

    AndyPandy Making the most of it

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    Australia
  2. Snowdrop

    Snowdrop Senior Member

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    @kristysmiles

    Happy Birthday.
    I've been reading your thread here and I'm so sorry to hear about your problems with being believed.
    Not that it's unusual as you must by now know.
    I don't have any help as to a Dr but I do have a few suggestions that perhaps you already have in hand.

    First, develop a strategy for how you will approach Dr's. Giving this some forethought will help you through the inevitable BS you will confront. Choosing how you communicate affects how you will be responded to. Develop this tool.
    Have a look here maybe: http://phoenixrising.me/treating-cf...drome-mecfs-doctor-visit-step-one-preparation

    Keep good records of interactions and all reports/tests/labs.

    Get your family and friends on side. Let them do some of the work (research etc). Get them to educate themselves for the long run so that they can advocate for you.

    Find what supplements might be useful to start right away. I'm thinking of anything that might help with inflammation.
    http://forums.phoenixrising.me/inde...ry-supplements-resveratrol-and-curcumin.1612/

    I'm sorry to say that the sites I linked to are from a site search and I have not read them.
    It's getting late here (only 7PM but I'm starting to struggle).
    wishing you the best,
    Snowdrop
     
  3. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @kristysmiles First, Happy Birthday!!! And I am glad that the Nexium is helping you so much, that is great. I do think you should get further GI testing if you can (stool testing, food sensitivity testing, SIBO and leaky gut) but this will all take a private doctor or ND and doubt the army will cover any of it. Best wishes whichever way you decide to proceed.
     
  4. kristysmiles

    kristysmiles

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    Kaneohe, HI
    @AndyPandy Thank you!


    @Snowdrop I've read that before. I think my issues with doctors is a combination of them not believing anything is wrong or that it's as bad as I sad, as well as noticing that I don't act sick. My psychiatrist says that I mask things from people, so basically I could be dying and outwardly everyone would think things were fine. She literally makes me explain how I feel about everything I say, because I say all these awful things are happening, but I don't portray any of the emotion that I feel about what I'm saying. I'm the person that can talk about awful things in a calm voice (not sure why). I think it's a self-defense mechanism to keep me from reliving those emotions every time I have to talk about things that upset me. I'm getting neuro-psych testing done today, so maybe that will show something.

    @Gingergrrl43 Definitely will look in the the GI testing, my parents will be in town in two weeks so hopefully they will be able to help me find a suitable doctor and drive me around for visits (explaining things to doctors is tiring!). My mom is also trying to get me a chiropractor referral. I've had two previous neck (whiplash type) injuries, and I've started to experience tingling and numbness in my left arm. Hoping a chiropractor might be able to help or provide guidance. The Army referred me to see one when the injuries first happened, but it was a 3-month wait, and then they sent me to Korea and then Hawaii.
     
    Gingergrrl likes this.
  5. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @
    kristysmiles I totally understand the first part re: doctors not believing anything is wrong but if you are able to see a true CFS specialist in the future, you will not have that experience. As far as masking things from people, I understand this too and sometimes I do this when I do not want to worry someone or feel that they are not trustworthy so I keep it private. But there are other times I could be talking about a horribly traumatic event but reciting it with no emotion as if I were giving someone a grocery list. I think it is a way of self-protection when the content of our words does not match our affect so we compartmentalize and do not have to keep re-living the trauma.

    As far as the GI testing, I am so glad your parents will be in town shortly and can help you. I've always wondered how whiplash could play a role and there are some other threads discussing this issue (I think re: the Atlas nerve or Vagus nerve- I get confused re: the science of it.) I was in a horrible car accident in 2006 where my car flipped upside down and I had very bad whiplash. However, I did not get sick with CFS until after mono in 2012 so I do not think it is related in my case.
     
  6. stevesayshi

    stevesayshi

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    Hi Kristy, I am recently ill myself. I have no idea how to navigate the medical system, but have some suggestions for a few easy things to try so you can function in the mean time. I had similar cardiac symptoms so I looked into what they gave heart failure patients. Commonly available supplements are d-ribose (up to 15 or 20 grams a day!), CoQ10 (preferably ubiquinol form), l-carnitine (various forms), and alpha lipoic acid. Niacinamide (B3) can help with stress, brain fog, and sleep. N-acetylglucosamine is another good anti-inflammatory.

    This won't help you get to the bottom of your situation, but for now, anything that can help keep you on your feet might be useful right? Good luck.
     
    Sushi likes this.

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