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  1. #21
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    i've just started seeing a kinesiologist and she hasn't started charging yet! no word on when she will start charging. and it's just the same clinic where my chiro is. it's almost too easy. she seems really good too.
    i might go to a naturopath at some point, it sounds like that might be worth it, but for now i'll stick to my free kinesiology

  2. #22
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    I have Fibro too and with it came costochondritis and bursitis. I also have Sarcoidosis and Osteopenia (early onset osteoporosis).

    I don't have any great answers for you, I had Endep pushed on me but I too refused, I heard so many bad things about it that I wasn't prepared to put myself through it.

    Magnesium is definitely a god send but that's about all I have to offer - I'm on prednisolone, calcium twice a day, vitamin D, acidophilius, steroid inhaler and ventolin, imodium once a day (they still haven't figured my bowel issues out!) and that's about it.

    I have also found going to the gym once a week at least to be fantastic - I either do a work out of have someone stretch me which I love.

    There are quite a few of us out there so feel free to vent, Fibro is a bl@@dy frustrating disease to have and even harder for people IRL to understand as you look well but feel like death.

  3. #23
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    Thank you heaps for the support, I really appreciate it. Ive been keeping it quiet from people IRL (Inlaws know but they are totally supportive as always) as a few just dont understand and think Im so tired from "just having two kids" They tend to think it's in my head Others say "Oh you just need some solid sleep" When I get 10 hours straight a night most nights!!

    The exercise is doing wonders, it's not exhaustive strenous stuff, enough to get the blood pumping and more oxygen into the brain.

    Im not letting it beat me, luckily, my GP explained that mine is not as severe as other suffers who have chronic muscle pains and aches and joint inflammation and suffer terribly, Im lucky I have only the extreme fatigue, hopefully it stays like it!!

    Luckily the nutritionalist I saw the other day works fulltime and she has told me to try the small things first and work my way up. She only wants to try one or two things at a time instead of a whole heap of things, as if something works, we dont know what did the trick!

  4. #24
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    The term CFS is bogus.

    http://www.hfme.org/cfsmustbeabandoned.htm


    The new name CFS and the CFS case definition was created by the CDC in the US in 1988 by a board of eighteen members (many of them psychiatrists); few of which had studied either an epidemic of M.E., or any patients with the illness. This new criteria failed to select patients using any past or current relevant research or lab work, excluded the cardinal symptoms and signs of M.E. and instead focused almost entirely on ‘fatigued persons.’CFS was created in a response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The three more experienced members of the board refused to sign the final document and withdrew themselves from the (CDC) definitional committee because the proposed new name and definition for the illness were just too different from the M.E. with which they were so familiar (Hooper et al. 2001 [Online]).In the two most commonly used definitions of CFS – the US 1994 Fukuda (or CDC) definition and the 1991 UK Oxford definition – the only essential symptom required for the diagnosis of CFS to be made is ‘chronic fatigue.’ All either of these definitions ‘define’ is a heterogeneous population of sufferers from misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but ‘fatigue’ (Hooper 2003a. [Online]).Despite the fact that it was an outbreak of M.E. which these CFS definitions were created to define the vast majority (an estimated 95% at least) of the research and articles available today which use the term CFS are not in any way concerned with, or relevant to, Myalgic Encephalomyelitis patients – yet these ‘CFS’ studies are what is used to determine the treatments that people with M.E. are recommended, or forced, to participate in. The small amount of research done under the name CFS which does relate to M.E. is also virtually always tainted by CFS propaganda. The creation of ‘CFS’ is an abuse of basic science. Despite the high level of disability and the vast number of patients involved, governments around the world are currently spending $0 a year on M.E. research.

  5. #25
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    northern - I disagree, and here's why. Genuine M.E (Myalgic Encephalomyelitis) is a deadly, life threatening illness. It is recognised by the medical field as a 'real' illness where CFS largely is not. That's not to say the treatments for it are good because they still aren't and outcomes are very poor.Now, M.E is testable - as in there are many tests for it to confirm it

    Again, CFS isn't like that and isn't diagnosed on the basis of blood tests. M.E can and is misdiagnosed a lot before the correct diagnosis is made.A lot of people with CFS unfortunately follow websites refuting these *facts* - and as a result, a lot of people with CFS and even Fibromyalgia and forms of Arthritis are led to believe they have M.E.

    Genuine M.E is testable my advice to anyone who believes they have it is to go to their doctor and get tested. My feeling is, since it's a very rare but serious medical condition, all of you will not test positive which is excellent because let's face it, it's deadly When it comes to the name Chronic Fatigue Syndrome? I agree, the name is ridiculous and is utterly bogus. It may not be testable but my goodness it is real and it is severe for many people including someone I care very much about. I myself suffer Fibromyalgia with a secondary diagnosis of CFS on top of it, fun LOL.

    CFS started (there was an outbreak) in the 1980's in Nevada and since then it's spread globally...there is also a link between the XMRV virus and CFS so nobody with CFS in this country (and some others) are allowed to donate blood. It's serious and it's a potential public health crisis.

    When it comes to the CDC, they do cover up the severity of M.E, CFS and Fibromyalgia however, they are still three separate illnesses. Sites and blogs like Hummingbird and even the official Australian CFS website have quite a lot of facts wrong and very, very out-dated information. Please be careful with what you read and believe.

    Many dying M.E patients are absolutely devastated that their illness has been swept under the rug, ignored and given a different title by so many people who are covering both illnesses up It is absolutely not on and very heartbreaking for people with M.E. I have spoken to some of them and it's why I've made several videos/blogs to raise awareness for all three illnesses - but to particularly get the word out about M.E.Hope this helps

    http://www.name-us.org/ - one useful site with info to look at.
    Last edited by Pinkzy; 20-01-2012 at 15:33.

  6. #26
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    MS should be ruled out in all patients before they're diagnosed with CFS. Unfortunately, MRI's are extremely expensive and they're not a test that all doctors organise

    When it comes to that though I'm very silly lol, my doctors have been pressuring me to go for an MRI for almost 2 years now (to rule out MS, it's huge in my family). I will get the courage to do it one day. I'm also tested for Lupus yearly as it's big in my family has has many similar symptoms to Fibromyalgia...so anyone with Fibro who hasn't been tested for Lupus? Go and get that done.

  7. #27
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    Quote Originally Posted by OurLittleBlessing View Post
    Wow, pinkzy, I never realised ME was deadly!
    M.E is deadly.

    CFS is not.

    Anyone with M.E *must* wear an oxygen mask and most patients are either in hospital or are home-bound with respite or a full time nurse. It is one of the most serious yet widely unknown about illnesses in the world Luckily it's quite rare.

    Put it this way, for example.

    Someone with M.E is unable to be very active at all, even walking from their bed to the toilet could kill them. Why? because those with M.E absolutely have to keep their heart-rate down. An elevated heart-rate is enough to land them in ICU or sadly, can be fatal.

    The above is absolutely, positively untrue for those suffering CFS. This is just one example but it's very relevant.

    ETA: Anyone with severe M.E must wear an oxygen mask. All M.E patients can't risk an elevated heart rate though as it can be fatal.
    Last edited by Pinkzy; 20-01-2012 at 17:05. Reason: Surviving on 5 hours sleep lol.

  8. #28
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    My sister has ME. She does not wear an oxygen mask.

  9. #29
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    Quote Originally Posted by northern View Post
    My sister has ME. She does not wear an oxygen mask.
    Not all M.E patients do - but many of them do. I am sure that she isn't able to do anything that elevates her heart rate though? Do you know what blood tests she had?

  10. #30
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    I'm a long term CFD suffering and in the beginning it looked like there was no light at the end of the tunnel but this is certainly not the case as every person with CFS treats it differently.

    My first piece of advice is find a GP with experience with CFS - I was lucky my GP had about a dozen previous and current patients and he said what works for one doesn't always work for the other.

    Look at your diet lots fruit veg meat carbs and cut right back on your alcohol!!! I have a couple of friends with CFS and the change in diet is about the only treatment we have in common.

    exercise - I wasn't able to go to the gym or walk for me swimming helped though.

    Medications - there aren't any really. Depending on what symptoms you have will guide you in what mess and natural remedies are good for you.

    Myself I suffered from extreme extreme fatigue - in the beginning I would fall asleep in the middle of conversations etc my family and friends were so used to it they would just let me go sometimes leaving me a note when they left my house. I also suffered impaired brain functions. I was extremely forgetful would lose stuff forget if I'd paid bills this was the hardest for me to handle as in the end I had to give up studying for a law degree. I went on mess yes they were antidepressants but I wasn't prescribed them because I was depressed but because for some reason they helped some patient with impaired brain function. They were a godsend!! I can't remember the name of them off the top of my head but can check into it if you pm me. Other things that helped me was reducing stress and my work hours.

    It took almost five years to rule out other medical problems and about 2 years to gain some control over my life. As a teenager I had glandular fever several times and some research shows a connections between glandular fever and chronic fatigue. My GP told me some people fully recover in around 5 years others will have recurring bad times in their lives I'm the later but have figured out that for me my bad patch comes every 2 years or so and unfortunately I'm in the midst of a bad patch now. Thankfully I will be giving up work in a couple of months as I'm pregnant.

    Sorry if I have ramble but I hope this info helps you. Pm me if you ever want to talk.

  11. The Following 2 Users Say Thank You to nelle7250 For This Useful Post:

    OurLittleBlessing  (21-01-2012),Pinkzy  (20-01-2012)


 

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