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Thread: Chronic fatigue

  1. #1

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    Default Chronic fatigue

    Anyone else suffering I've just been diagnosed and I am so overwhelmed


  2. #2

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    Default Re: Chronic fatigue

    Oh dear J. Big hugs. Have you been tested for MTHFR defect? It can influence chronic fatigue as well as many other conditions.

  3. #3

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    Default Re: Chronic fatigue

    No haven't yet just standard bloods and a few viruses apparently I have had glandular fever at some point, no one seems to understand how hard it is and now I have to figure out how to stop work financially , what to do with uni and how on earth to manage 2 kids under 3 and a marriage
    I have a rheumatologist app in 2 weeks and hopefully I can save to see a naturopath eventually

  4. #4

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    Default Re: Chronic fatigue

    That's full on, sorry to hear

    I've had glandular fever twice (for weeks the first time, months the second time) (and yes, I know it's only supposed to be able to be a live disease once per person - my family seem to be over achievers, and sometimes get things twice...) and was close to being diagnosed with CFS the second time.

    Every single female friend I've had with a CFS diagnosis has however over the past 6-7 years been re-diagnosed with POTS (http://en.wikipedia.org/wiki/Postural Orthostatic Tachycardia Syndrome)

    Check it out. I'm talking about 10 women aged 15 - 35. Each of them have been re-diagnosed, and are on good steady treatment plans to manage the condition very well. Some of them have been able to go back to work part time or full time, three of them have been of good enough health and energy levels to happily and confidently grow their families, two have gone back to do more study (on top of work in or out of the home) and all but one have really get back engaged with community and social groups. (NB: the one who hasn't has some mental health difficulties as well, which have interfered with her participating in things or continuing study or work - she is healthy, but prefers to keep to herself.)

    So yeah, long story short - look into POTS and speak with your Dr, or a specialist if your Dr isn't familiar with it, because the management program is with specific kinds of exercise and movement, etc, and is quite different from the usual treatment for CFS.

    Good luck! I hope you're healthy and whole soon, and have a great management plan for you inside and out.


  5. #5

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    Default Re: Chronic fatigue

    Yeah as I will be going to a rheumatologist I hope he can help me with testing for pots as I do have joint Hypermobility syndrome

  6. #6

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    Default Re: Chronic fatigue

    I hope you get answers and solutions soon

  7. #7

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    Default Re: Chronic fatigue

    Thanks this week been so very stressful trying to figure out how to drop work days financially

  8. #8

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    Default Re: Chronic fatigue

    Are you eligible for Sickness Benefits or the Disability Pension?
    Also google
    MTHFR Made Easy Podcast: Dr Ben Lynch interviewed by Sean Croxton of Underground Wellness. It may give you some answers. Xx

  9. #9

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    Default Re: Chronic fatigue

    Yeah I've heard the mthfr mentioned a few times will look into it I'm eligible for parenting payments but that still won't cover fully

  10. #10

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    Default Re: Chronic fatigue

    Jellybean . I'm sorry you have been so wiped out. I'm sure it's all overwhelming right now, but just take one step at a time and you'll get through this.

    I've suffered from fatigue for a long time, and I also tested +ve for epstein barr, but in my case I eventually had some sleep studies done & discovered a complex sleep disorder was the culprit. Many people like me go through a number of diagnoses before finding out it was about sleep all along. So, don't stop asking questions & arming yourself with info and if necessary get the opinion of a few specialists, as CFS may be only part of the picture.

    The way I get things done when it's bad is to pace myself, break things into smaller chunks, and prioritise. For uni, I got in touch with the disability services team, and they stepped me through the process of getting an access plan set up. For me, this means I have a document which allows me to apply for extensions at any time without having to explain the reason. That access plan is the single reason I am still at uni and still learning. They have lots pf other adjustments which might help you re flexible attendance or distance learning, whatever will help you. I also dropped back to doing a single subject per semester (ie 25% load). It prolongs the studying pain but has been worth it totally.

    Re work - I don't know what type of work you do, but you need to know that CFS is a chronic health condition and there are protections in place for workers like you, so make sure you know your rights. In the first instance, can you take personal leave instead of suddenly reducing your hours? Just to get you through the crisis? That might give you some time to think about what steps to take to manage in the longer term.

  11. #11

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    Default Re: Chronic fatigue

    Unfortunately I've run out of paid leave as it's taken 6 months minimum for me to admit something wasn't wrong and in that time I used up all my leave

  12. #12

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    Default Re: Chronic fatigue

    Just an update looks like I may be loosing my job this friday

  13. #13

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    Default Re: Chronic fatigue

    So sorry to hear this


  14. #14

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    Default Re: Chronic fatigue

    Jellybean . I'm so sorry this is happening. Please get some advice, either from the union or from the working womens centre in your state. It may be that you can negotiate a change in hours or some other kind of accommodation for your chronic illness.

  15. #15

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    Default Re: Chronic fatigue

    I'm not sure what to do cause I can't physically work and they have been giving me sick leave a lot over the last year before I was properly diagnosed I think there just over me I'm a problem for them because we're already so understaffed

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