Any fellow CFS (chronic fatigue syndrome) sufferers?

[blueangel]

Hi Everyone 🙂

 So I've had chronic fatigue syndrome for about 13 months now and honestly I can't remember what it's like to feel energised and not tired (ugh so over it..). I exercise daily, eat well (most of the time haha) and have quite bad caffeine habits (on average I have equivalent of 8-10 cups of coffee per day) but I'm feeling extra somnolent of late and need some new ideas.

Any advice or suggestions would be awesome!

[Simmo123]

Hi just been doing to Mutch .i know I shouldn't now lots of pain hard to think .have found support group which helps.scared of going crazy?or am I all ready .very isolating.

[Guest_7027]

Hi Simmo,

Everything you've written are what ALOT of ME/CFS people go through. The illness really messes with one's head. And the doing too much, then having lots of worse symptoms afterwards, such as difficulty thinking, pain, aches, etc; is also a common experience (some call it the 'boom and bust' cycle). And feeling scared that one's going crazy - I felt that too, before. The isolation that ME/CFS sufferers is also very real and makes it double-difficult. Sorry that it's so much of a struggle for you right now. Hopefully you can at least find some comfort in knowing you're not alone or crazy. I encourage you to keep posting here and reaching out - it might take time for me and/or others to reply (since we're going thru similar crashes) but please remind yourself that LOTS of people share similar experiences. In the meantime, I encourage you to check out some of the info on Emerge Australia's web site - I found it very helpful.

[Imsad]

Hi blue angel i was diagnosed a ways back and although my life hasnt improved much though im not sleeping 4/5 days straight now it can and it will Think positive and dont isolate yourself!! All the best im sad

[Guest_7027]

ME/CFS interviews were aired on Triple J Hack on 12 Oct. Here's an outline of some of the points: Excellent points about how exercise would worsen the condition, compared to before CFS illness when Andrew (interviewee) had depression and exercise did help. 7-fold suicide rates cited. No tests available. Glad to hear that they recorded Griffih Uni's National Centre for Neuroimmunological and Emerging Diseases's (NCNED) Prof Sonja Marshal-Gradisnik mentioning of their research on biomarkers as evidence that CFS is not a psychologically-originated illness. Highlighting of lack of integrative care, e.g. separating physical from mental issues. Emphasis on integrated approaches to address individual-specific needs to address complex illness.

[Drewf2]

Not sure where you are from in Australia but in Perth there are a few pretty good CFS doctors. Ive had it for 15 years and recently gotten a hell of a lot worse after a bad virus. I was exercising regularly up until 4 months ago, now I can't do much as i just get sick if i push at all, in general I believe any exercise you can do is beneficial to keeping you afloat as when I stop I get much more fatigued and depressed. I used caffeine to get through the work day for about a year but it ends up coming back to bite you because you start getting adrenal fatigue issues, another 'made up' diagnosis most docs dont believe in. Plant proteins work for me for energy and B complex works really well for me mainly B6 and b12, except it seems to sometimes make me anxious having such an energy rush from them. I've also really started to realise that quality of sleep (not how long you sleep) is a big one so things like magnesium and gabba producing supplements are beneficial, you sleep more refreshed rather than the usual waking up just as exhausted as when you went to bed. Most people I have read that have conquered CFS have done a multi faceted approach of food, supplements, exercise and psychological therapy.

[Denv12]

I have cfs. Had it for years. I try to look after myself as best as possible. It can get be depressing at times.Its certainly restricting.I have to do all my household chores,online shopping and handle the deliveries because I'm on my own. I manage at the best of times.I dont really have a choice.

For those with cfs/me/fibro,etc,how is everyone else doing? I dont have the fibro though. Feel free to compare notes anytime.

[Guest_7027]

There are lots of posts/tips on the ME/CFS Australia Facebook group about how to manage ME/CFS/Fibro. I've found the advice on Emerge Australia's website very helpful - particularly their fact sheets about pacing (i.e. staying within) one's energy levels throughout the day/week. A lot of ME/CFS/Fibro people whom I've met recommend pacing is key. https://emerge.org.au/category/about-mecfs/fact-sheets/

Also, the info underneath their Patients section is useful too. https://emerge.org.au/

The Irish ME Trust has a handy, free book online called, "ME - Post-Viral Fatigue Syndrome: How to Live With It". I found the advice helpful. https://www.imet.ie/imet_website/management/further_reading.html

[springrolls12]

Hi Aussies, I live in melbourne and have finally just discovered I am positive for rickettsia which has caused my CFS. Could everyone who has not been tested for tick borne illnesses please get tested no matter what part of Australia you are from incase this could be causing your CFS. Doctors did not have the knowledge, or didn't consider it as I am from Melbourne, and the ticks are prevalent in QLD.

[springrolls12]

hi, for anyone who doesnt know what's causing their CFS please get tested for all tick borne illnesses included Rickettsia. Initially i was ruled out for tick borne illnesses as i did not have all the symptoms/ my flu like symptoms were too vague, and had not travelled to QLD. Luckily i had been tested for it, however it would have saved alot of time/lifestyle/worrying/ not having to resign my job if I had been tested earlier.
The treatment (2 months of medication) can completely cure your CFS. My GP stated she should get all her patients back in who were diagnosed with CFS/post viral syndrome to be tested for this.
Even though my GP says it's rare, and I am her first patient in 45+ years of experience, the Ricketssia lab said its a growing problem in Melbourne and more common than doctors think/ dont have enough knowledge or awareness about it. I would hate for anyone to go through CFS if potentially Rickettsia is the problem and can be easily fixed

[Denv12]

Its been ages since I first posted this. I've still got cfs and anxiety too. A lot has changed.I still hate the isolation.I just cope better everyday.Thats a blessing. I'm bored more than anything though.Living on my own doesnt help. I still use Acupressure each day to help me get through a day. I also use a technique I learned called "Faster E.F.T"(short for Faster Emotionally Focused Transformations.) I still read a lot.I read self help books.Some books on Kinesiology,Acupressure,etc. I read a lot of relationship type books.You never know when that will pay off. And,I do like helping other people with problems,it makes me forget about my own.

I hope you are all doing okay.