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 all,

This is my first ever post on these forums and am so glad to have finally found an online forum that deals with CFS. Since 1 June 2016 I have had post-viral fatigue syndrome (PVFS). When I Googled it, found that PVFS sometimes gets included with CFS. I think my condition has resulted from a very emotionally stressful year (e.g. job loss) as well my underlying low anxiety tendencies.

I found the resources on Emerge Australia's web site very useful as a starting point to better understand CFS and what one might be able to do. One of the key challenges seems to be that the 'causes' and therefore various treatments for CFS can be complex and not clear-cut. For me, it's been hard enough dealing with the physical fatigue, let alone the confusion of trying to figure out what to do, which advice to follow, etc; A friend of mine who'd worked as a naturopath said that there are many approaches to dealing with CFS, that everyone is different and therefore to try to trust one's own personal healing journey.

I'm a big believer that finding peer support really helps - particularly to at least offer each other comfort, breaking down feelings of isolation/loneliness/that no one understands what its like to have such huge fatigue - physically, mentally, emotionally, spiritually.

Again, I'm so glad that I've finally (after lots of searching around web sites, making phone calls to various organisations, asking friends, my GP etc;) found this online forum and just wanted to say 'hello' for now.

[littleone13]

Hi BlueAngel

I suffer from CFS along with high-functioning depression & anxiety.

I'm currently unable to work which is a big deal for me. I'm working with my doctor and an exercise physiologist on my CFS which is good, but am also searching for a psychologist who specialises in CFS.

I hope you things are going okay in your battles and that today is an okay day xx

[Denv12]

Hi blue angel.

I have cfs.Had it for years. Mine is severe it keeps me at home. I use acupressure everey day to help me get through the day.There are 8 pressure points you can gently rub for about 60 seconds each and do that a few times a day.I do it 2 hours before I get out of bed,when I get out of bed and again around 11am.Usually I can do most light chores around the home including making meals.

You can look up pressure points or acupressure.I just got to herbalshop.com then to their list of 199 ailments.Look up any symptom and clock on those.Look at the diagrams.You'll notice you'll feel better afterwards. Use it everyday.

[CheeseSlices]

I have been diagnosed with Chronic Fatigue, but by a psychiatrist, does that count? The pain specialist said Fibro and disc issues in my back. The advice to me has been "rest" I have been trying to "rest" for over 3 years. Turns out I "rest" best, when being active and giving my body a break from the horrid treatments they enforced.

I am pure shocked at how much more energy I now have almost a year off neuroleptic medication. I sleep around 3-6 hours now, but before it was easy to sleep for 20 and I would still be sluggish (to the point of leaving stoves on, waters running, washing in machine for days). It was so so so hard to have the fatigue and then a tranquilliser added! I was too sick to see their treatment did not make sense. I do suffer in windows and waves of fatigue. If I do too much one day, I will be wiped out (incapacitated unable to shower, cook or clean) for weeks. If I am careful and manage the energy I can survive ok with doing basic life household chores. I still struggle with being off work, and boredom, yet not having the energy/money to do much else. Everytime I work, I end up in hospital (usually for a spew -a -thon, I vomit when the pain in my body gets too much, and then cant keep food/fluids down). I miss having more to do than living in 4 walls of a house and meeting basic life needs. Yet most nights passing out in a heap by 7pm because I just cant stay awake.

I would love to have the money for a diet overhaul. My problem is, shopping and then preparing fresh food involves planning for it to be cost efficient. Planning by someone who knows their capabilities and can manage to put a diet plan together - I am not that someone. I regularly would go out and buy fresh market food (as doctors directed) but was then wiped out for the week and the food would go off before I even had the energy to look at it ( living with another does not help matters much). Now I will buy food I know I can microwave for a quick snack (veg), fruit gives me headaches at times? But when I look at a $6 cauliflower, still needing to be washed, chopped and cooked, it is so overwhelming.

My carer prefers to opt for two meals at hungry jacks for under $6 when I am incapable.

[Denv12]

I joined the Emerge Australia this week.Its a good start. Thank you for the suggestion.

Its good that other cfs sufferers have a place in Australia to support each other.Having a mental health issue and cfs we need support.

[NewToCFS]

Hi, found your post very useful and enjoyed reading through it. I have recently been told by my GP that I have CFS.

I had to take time off work as the symptoms are so unpredictable. One day I could feel 80% fine and thenext day I can't function at all

I have started eating better, green etc. doing self treatment since doctors can't do much 😞 You mentioned your friend being a naturopath I was wondering if you/ friend know of any good nutritionist/ dietician/naturopath in Melbourne . I am keen to get my diet evaluated including any intolerances and at least try and see if eating better can be of some help.

feeling helpless at the moment, I am a workohic and love my work so just the thought that I may never be able to function at 100% is terrifying. I just want to try out everything...

[Sophie_M]

Hi NewtoCFS, while we can't recommend practitioners here on the forums, we can provide support around managing fatigue symptoms.  Have a look through some of the recommended threads Chris B gave at the top of the page, and you can always start your own new thread as well to tell us more about your situation. 

[Guest_7027]

I see that we're not to recommend particular practitioners, eg. dieticians, naturopaths, etc; In the meantime, I did find the resources on Emerge Australia's web site very useful. My GP had also recommended reading the book, Adrenal Fatigue (author: James Wilson), which then prompted me to take up restorative yoga and meditation (both of which have been very helpful) to help nurture my adrenals. The big challenge that I'm finding is that the few local in-person support groups are either too far for me to travel or that they're so stretched for resources, I don't hear back from them. In the meantime, this web site does really help at least bridge the sense of isolation.

[Squinky]

Hello I am wondering how did you get diagnosed with CFS? I've been seeing several doctors and some of them don't seem to believe in CFS.

I understand that there's some overlap between symptoms of CFS and depression, but for me it started with physical problems, now I'm in a kind of spiral with anxiety and depression cause I'm so fatiuged and can't get out. This week has been really bad, barely able to walk at all.

[Guest_7027]

Unfortunately many GPs are not sufficiently trained to diagnose CFS, according to Emerge Australia. And according to the USA gov't org, the Institute of Medicine of the National Academies, Feb 2015 "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts" document, an estimated 84 to 91 per cent of the USA population have not been diagnosed, meaning that the prevalence of CFS is as yet unknown.

My recommendation is to look up 'integrative medicine' or the College of Nutritional and Environmental Medicine to find a GP that focuses on holistic approaches, including dietary issues, to recovery. I did that and luckily found 2 fantastic GPs! And even better news, my recovery has been very good, according to the 2nd GP (i.e. it's nearly been a year and my adrenal saliva tests are showing a 50% improvement). August 2016 I could barely hold a mobile phone for 30 seconds - now I'm able to swim 10 laps of an Olympic pool. However, I still have brain fog, post-exertion malaise. For me, a real key is addressing stress management - restorative yoga and meditation have been absolutely fabulous. I also recommend Googling 'adrenal fatigue yoga', 'seratonin to better understand possible dynamics. Please remember that everyone is different, symptoms and underlying factors can vary.

Also, some state-based CFS/ME support groups (I found some via Google) do keep a list of preferred doctors, as recommended by their members. Perhaps you could also try contacting a state-based support group?