Julie Rehmeyer's 'Through the Shadowlands'
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Getting treated/diagnosed in Taiwan is troublesome

Discussion in 'General Treatment' started by mindglow, Jun 19, 2012.

  1. mindglow

    mindglow

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    Taiwan
    Hi all, firstly, thank you to whoever runs and supports this wonderful forum!

    Ok so here goes...for around 8 months now I have been waking up in the morning and getting around 2 hours of wakeness before I suddenly get hit by the sledgehammer of fatigue, I can only describe it as feeling like ive just returned home from a 12 hour shift doing groundwork/laboring when in fact I have done nothing but wash, and sit down next to my computer to begin work (I work at home)

    However, some days I can manage 5 hours (around 50% of the time) before I simply must crash or my brain just becomes a vegetable and useless to me so I cant do any work. I seem to do better in the evenings for some reason...

    There may be a number of causes for this that I can see:

    1. Staph infection that begun around 12 months ago that *MAY* have gone systemic and caused god only knows what kind of problems to my insides
    2. Head injury around 6 months ago involving a motorbike accident
    3. Irritable bowel syndrome and taking 12mg Trimipramine (TCA's) to calm bowels. Have now stopped taking the trimipramine as part of an experiment to see if the fatigue diminishes at all - no such luck yet.

    Eating has become a big issue for me recently...in the last 6 months I cant eat anything without having to crash or stay awake zombified attempting to get work done (often my choice) - not just an hour of tiredness after eating but it often lasts the whole day after. I will certainly try your suggestion of olive oil, vegetables and fish beginning today and report my findings.

    I am currently living in Taiwan with my wife so getting treatment out here can be difficult due to 1. communication barrier and 2. the general lack of understanding of things like CFS/IBS etc so I may have to rely on the internet and forums to help me get through. I will take a look at the International Consensus Criteria (ICC) for M.E http://www.imeassoc.com/ today

    So if anyone has any thoughts, I would be most appreciative indeed! thank you

    Will post back soon
     
  2. mindglow

    mindglow

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    Taiwan
    I have gone through http://www.imeassoc.com/ (International Consensus Criteria) In A,B and C I can confirm I have at least one symptom in each category. However I cant say confidently enough that I have anything in the D category - its diffficult to say really...I do have some serious sweating episodes but that may be more attributed to the humid weather out here in Taiwan than possible CFS - I have had respiratory problems (could not find breaths) in the past but nothing recently in the last few months

    It does kind of look like I have CFS but im not convinced yet...

    Any thoughts greatly appreciated, thank you for reading
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    Albuquerque
    If you can't see a really knowledgeable doctor and be able to communicate with him/her, do you have the possibility of traveling to another country?

    I have not heard of patients in your part of the world finding good success with doctors--except for maybe in Japan, but again there would be a communiction barrier. Seems like you need some good and thorough testing to see what is going on.

    Best wishes,
    Sushi
     
  4. *GG*

    *GG* Senior Member

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    Concord, NH
    Welcome to the Forum!, unfortunately I don't have any different feedback than what has been posted. Just wanted to let you know that the Forum is run by members and the support is via donations etc..You can set up a monthly donation of as little as $1/month. FYI

    GG

    PS Not sure what country you are from, but you might want to check out the co-cure good Drs list, it's outdated some, but I found my Dr there, and he has helped me a lot!

    I have been on LDN for a few years now, and think it has helped me out, not positvie since I made a lot of changes around the same time. Just got tired of changing one thing at a time, and not getting any results, before you know it years have gone by!
     
  5. mindglow

    mindglow

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    Taiwan
    I dont really have the time/money to go abroad to see a doctor right now - If I were to go anywhere it would be Japan as that would be the closest to me....does anyone know how long I would need to stay there in order for them to do all the necessary tests to rule out other possibilities?

    I think for now, Im just going to continue with the Methylcobalamin shots 3x a week. Just had my second today and it seems to be making a slight difference - hard to say so early yet. I have stopped plugging the methylcobalamin capsules.

    thank you
     
  6. mindglow

    mindglow

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    Taiwan
    While trying to find a CFS specialist in Taiwan I discovered that they actually refer to CFS here as 'Neurasthenia' ( traditional Chinese: 神經衰弱; pinyin: shénjīng shuāiruò) which is interesting and translates into 'Nervous Breakdown'. In China and Taiwan, Traditional Chinese medicine describes Neurasthenia as a depletion of qi "vital energy" and reduction of functioning in the wuzang "five internal organs" (heart, liver, spleen, lungs, kidneys)

    Seeing as Traditional Chinese Medicine is everywhere around me and extremely common in Taiwan (practically on every other street corner) I might give it a go and report my findings to you all.

    Did you know that CFS or Neurasthenia is also known as Primary Neurasthenia, Cardiac Neurosis, Chronic Asthenia, Da Costa’s Syndrome, Effort Syndrome, Functional Cardiovascular Disease, Soldier’s Heart, Subacute Asthenia.

    :)
     
  7. Ai-Yai

    Ai-Yai Mad Genius

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    Mom
    It is one of the best places for general medical examinations in the world.
    Details about med. system and its insides in Japan i don't know unfortunately for today -just another world... completely.
    But soon maybe i will. Hope will visit Tokyo this year.
     
    mindglow likes this.
  8. Hope123

    Hope123 Senior Member

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    Japan has some interesting research going on for several years about CFS. You have to be somewhat careful though because some of the work concerns "burnout" [i.e. people being tired from overwork/ work stress and not from illness primarily] rather than illness. If you google "Japan" and "chronic fatigue syndrome", you may come across some papers of interest; find out who wrote them and what university/ school they come from and then try to contact that person. If they are not an MD, they still might be able to refer you to an MD.

    Having had relatives who became ill in Tokyo, the way medicine is practiced there is fine and I would not underestimate the number of medical personnel who might speak English. Definitely ask. But just know it is hard to find knowledgeable CFS docs world-wide in general.

    Also, check out this letter from someone affiliated with a Japanese CFS group; their contact info is at the bottom:

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60686-7/fulltext

    TCM hasn't worked for me despite several attempts.
     
    mindglow likes this.
  9. Ai-Yai

    Ai-Yai Mad Genius

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    Mom
    I'm gonna visit Japan not bc of CFS. I .e. i'm not going to fix CFS there bc i just don't need that.
    I want to visit Tokyo and Osaka bc of business primary, some exclusive dental works ... and bc have some friends there.
    Imho for sick one the worst option is to find so-called CFS doc. I didn't ever see any good( to some measurable level) CFS doc till today.
    An avarage CFS patient usually has a lot of underlying troubles. So i'm just talking that Japan is one of the best place for almost any medical "fixing" or "investigation" all over the world.
     
  10. taniaaust1

    taniaaust1

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    Sth Australia
    Neurasthenia is a very old term for ME/CFS

    Ive heard that term used for dysautonomia rather then ME/CFS. Im not sure if that list you had there are all the same thing and think some of those names are refering to different things.
     

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