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!

[Guest_7027]

Hi CheeseSlice,

I really appreciate the huge physical/energy and $ challenges of trying to maintain a good, nutritional diet while one has CFS. Several of my health practitioners recommended that I reduce sugar, refined/processed foods, milk and gluten and increase protein, especially eggs - basically I'm now on a modified paleo diet - and it's really helping! Again, I highly recommend the resources on Emerge Australia's web site. Also, along my internet search, I found the Irish ME Trust (myalgic encephalomyelitis) via one of the state-based support groups. That web site's Management section had a very useful freely downloadable book called ME - Post-Viral Fatigue Syndrome - How to Live With It. The book contained a whole chapter about nutrition.

As for the veggies question, I fully understand how buying and preparing fresh veggies can be really overwhelming. Perhaps you could at least try using frozen veggies if you're unable to do fresh ones?

I recognise that everyone's bodies react differently - it took me a while to listen to my body, but I am learning. And the results are paying off. I hope this info helps.

[Guest_7027]

Hi NewToCFS,

Good on you for improving your diet, eating more veggies, etc; - from everything I've read, what one eats is really key. I also see that you (like me) are a workaholic. Very easy to become one in this frantic, 'do more with less', stressed out world. I have really been looking at my own workaholic tendencies and recognise that it has been a HUGE contributing factor to my current CFS illness. And my GP had provided me with an article about the enormous biophysical impacts of stress on our bodies. Out of curiousity, I also Googled 'parasympathetic nervous system' and learned even more about how stress destroys our bodies.

On a positive note, as I've mentioned in my other posts, my GPs' recommendations to focus on de-stressing (e.g. doing restorative/yin yoga, meditation, tai chi) are having HUGE positive benefits for my CFS recovery. When I was house-bound (and extremely bored!), I YouTubed 'adrenal fatigue yoga', noticed that a few poses were commonly mentioned by the instructors - so I tried them out for just 1-2 minutes and these poses had done wonders!

Please note, that I did see in one online write-up that one should first check with one's GP or find a qualified yoga instructor (e.g. someone who's registered with Yoga Australia, the national yoga association) since not all yoga poses are recommended if you have other illnesses/injuries, etc;

As for meditation, there are tons of web sites that provide Do-It-Yourself meditation guidance. I'd actually contacted the Relaxation Centre (in Brisbane, Queensland) and got a few of their meditation DVDs - again, great results!!

I hope the above info helps even a tiny bit.

[Guest_7027]

Hi CheeseSlices,

I also totally relate to your feelings of being overwhelmed. In my acute phase, I had to choose whether to cook, clean, buy food, bathe, etc; So I prioritised eating/cooking - which meant I slacked off big-time on showers and house-cleaning. I also used online grocery shopping (I'm not sure if you live in a place where that's available?). Yes, it was extremely exhausting cooking. But I kept at it, holding the belief that at least I was feeding my body with nutrients. And as excruciatingly hard as it was, I tried to look at the cooking as my own 'home entertainment' - something to keep my mind distracted. I would have to sit down on a chair to do the food prep and dishes - and/or take rests in-between. Do what you can, even if it's tiny, tiny steps. And may you find comfort in knowing that you're in the company of approx. 240,000 Australians with CFS (according to the "ME/CFS International Consensus Primer for Medical Practitioners", written by the International Consenus Panel, approximately 0.4 to 1% of the worldwide population has CFS/ME). You're not alone and many of us, including me, really empathise with your daily struggles.

[Denv12]

I thought I was the only one with cfs here. I'm glad I'm not alone here. Feel free to compare notes.

As mentioned in my earlier post I do look after myself.

[Simmo123]

Hang in there I have been diagnosed with chronic fatigue. Had it for 18 years have little help to offer massage is only short relief. It's hard not to become mentally effected there are no answers .

[Simmo123]

Hi I'm new had cfs for18years it's hard there's no one that seems to give ashit.you become isolated frustrated. U lose your sense of self worth I've just lost wife house but the sun will come up tomorrow. Finding life hard right now

[Just Sara]

Hey Simmo and welcome to our caring BB community;

As this thread isn't being visited by the original author and doesn't have regular posts, how would you feel about starting your own?

Even though you've only written a few words, it's obvious you're in need of some TLC. If you write about yourself a bit more in the Welcome and Orientation section, your thread will be moved to an appropriate section later on by moderators.

Members can catch up when your first post on that thread appears. Please don't be discouraged as you've already shown massive strength and courage by coming on board to write.

All it takes is to persevere and maybe post on threads (current one's) you're interested in too, and find members who're supportive or like minded.

I'll keep an eye out for you as I know others will too once you find your groove so to speak.

Lovely meeting you...

Sara

[Simmo123]

Thanks new at this don't realy know what I'm doing

[Simmo123]

Try massage meditations yoga it gets you out and about had cfs for 18 years no one seems to care . Tried Chinese herbs they did clear the head for a while . Not very nice to drink Cfs sufferers seem to be put in the to hard basket good luck

[Guest_7027]

Hi Simmo123,

Isolation, being lost, not knowing what to do, feeling that no one cares - these feelings are very much shared by many people with CFS. Good news is that there are quite a few support groups online - e.g. this one, as well as ME/CFS Australia (on Facebook). And Emerge Australia https://emerge.org.au/ offers peer-to-peer support program (they'll match you up with someone to share support). Currently the film documentary, 'Unrest', which is a Sundance award-winning film, is touring the world, including Australia, to raise awareness. You can at least watch the director's talk on TEDTalk (also available via Emerge Australia's web site). You and other CFS sufferers (including me) are not alone. This highly debilitating illness affects approximately one per cent of the world's population, including 240,000 Aussies !), according to conservative estimates from the 2012 Myalgic Encephalomyelitis (ME) International Consensus Primer for Medical Practitioners. In the meantime, it's good that at least you're reaching how here at BB. Although our symptoms/experiences may differ, many of us here can definitely relate to and empathise with the huge struggles of ME/CFS.