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Forums / Depression / Any fellow CFS (chronic fatigue syndrome) sufferers?

Topic: Any fellow CFS (chronic fatigue syndrome) sufferers?

  1. blueangel
    blueVoices member
    • A member of beyondblue's blueVoices community
    blueangel avatar
    11 posts
    28 June 2015

    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!

     

    2 people found this helpful
  2. Chris B
    Community Manager
    • Works for beyondblue managing these forums. Not a mental health professional, but here to help. Email: christopher.banks@beyondblue.org.au
    • A member of beyondblue's blueVoices community
    Chris B avatar
    1552 posts
    29 June 2015 in reply to blueangel
    3 people found this helpful
  3. Denv12
    Denv12 avatar
    40 posts
    22 February 2016

    Hi blueangel.

    I have cfs as well.And had OCD for several years. I can relate to the no energy thing.I have that.What I do to get through a day better is to do acupressure for CFS.Its rubbing pressure points that give you a little energy. I do them an hour before I get out of bed then after I get out of bed.There are times my energy levels drop at any moment I just do those pressure points again.

    There are several pressure points.You can do a search for acupressure for cfs.I found one site that shows diagrams showing those pressure points.Rub each one gently for 30 seconds at a time.

     

    Another thing I use everyday to reduce the severity,its called "Faster E.F.T". Its tapping on pressure points. You can use it for CFS as well.I've been using it for almost a year. You can do a search for "Faster E.F.T" where you can find diagrams,youtube videos,etc.There's even a support forum for people wanting advice while they use it.I used to feel very heavy as if I was dragging my feet but I'm a lot better because of those 2 things I do everyday.Its a work in progress but its worth the effort.

     

    What sort of things do you do to get through a day?  For me,I usually read books.(I buy a lot).Some self help books like acupressure,relationships,and just books on hobbies,etc.Helps my day. Living on my own is a pain,I dont get outside help.I have to get groceries,etc delivered.

     

    You are welcome to compare notes anytime.

     

  4. soulsolaris
    soulsolaris  avatar
    17 posts
    26 February 2016

    Hiya, i am also diagnosed with chronic fatigue syndrome and fibromyalgia aswell as a huge handful of other symptoms. Like you, I'm abit lost as to how to deal with the fatigue or anything i can do for it. I hope we both find some answers. Mine is so severe i am incapable of doing pretty much anything. Right now im having a big flare up of symptoms so the fatigue is even worse.

    Im interesting in trying some of the suggestions above. Unfortunately i dont have much to offer in terms of advice but i do completely understand and empathize with how you feel. xx

    1 person found this helpful
  5. soulsolaris
    soulsolaris  avatar
    17 posts
    26 February 2016
    I would however suggest if you havent maybe try cutting out certain foods. Ive cut out gluten and dairy and most grains. Im quite sure this flare up was because i actually decided to eat rice aswell as butter everyday for a few weeks and they are known to cause autoimmune reactions if you have gut issues. Im also personally wanting to look into a candida overgrowth and leaky gut as possible causes of my fatigue and other symptoms. May not be a whole lot of help but that's all i have to give, lol.
  6. Nigel11
    Nigel11 avatar
    1 posts
    12 April 2016

    I have finally been diagnosed with Chronic Fatigue. I have been complaining of it for years. Doctors and specialists always put it down to my spinal fusion 14yrs ago. Now I have this along with Emphysema, IBS, Hearing Loss, Sleep Apnea and a few other conditions. I have been very limited in what I can do for years now. I can't remember when I last had a good day when I could actually think clearly without brain fog and constant neck pain.

    I was knocked back for the 3rd time claiming the DSP. Originally I had 20 points in 2004. In 2014 it was reduced to 15 points and only last week they rejected my claim again and added to insult by reducing my incapacity to work to 5pts. I was literally gobsmacked. My conditions have been treated over the years event though not full diagnosed. Atm, the only relief I get is trying to sleep. But that has it's drawbacks, especially with Central Sleep Apnea. It only happens to me when I have day time naps. Possibly because I don't take sleeping pills during the day. I can't drive on the open highway or around town for more that 20-30mins either. I've lost half my hearing in one ear and am unable to wear aid as it irritates my ear.

    I have so many issues that Centrelink won't even recognise my Chronic Fatigue as it is recently diagnosed and not treated or stabalised in there eyes. A real kick in the guts for me.

    They all say that I need to go to a psychiatrist and that my condition is depression. They didn't even forward my claim to medical professionals. So now I have go back to specialists Lung, Orthopaedic, Psychiatrist just to name a few to convince them that my conditions are permanent. It sucks. I can't afford a CPAP let alone all my medications.

    Any suggestions?

  7. eightball
    eightball avatar
    1 posts
    19 May 2016

    I have mild chronic fatigue and am severely depressed. Thanks

  8. carolko
    carolko avatar
    1 posts
    1 July 2016 in reply to eightball

    I have aquaduct stenosis; which requires brain surgery to put shunts in. I've now had about 21 of them; the last one causing brain damage (forgetfulness etc). I quit my job, moved to Geelong but now I find myself with no friends and I'm depressed. Life is strange....

  9. LittleA
    LittleA avatar
    5 posts
    4 July 2016 in reply to blueangel

    Hi blueangel.

    I suffer cfs also. I'm only new to it, a few months in, so unfortunately don't have much advice. It's taken a massive toll on my relationship, to the point that I don't know if we'll last much longer. It's all too hard for my partner.

    I also suffer depression & anxiety, which my cfs has enhanced 10-fold.

    I hope you find some relief soon. All the best x

  10. RJSDriver
    RJSDriver avatar
    2 posts
    2 September 2016 in reply to blueangel

    Hello all,

    I am undiagnosed CFS, but have clear symptoms. Mostly related to cancer surgery of stomach, chemo and later diet issues with gluten, lactose, sugar and other things.

    Have improved my situation a lot, lost some weight, gained a good understanding of diet etc. Still wake up tired, go to sleep tired.

    Just left another (of many) jobs due to this condition. Am broke, and have been mostly for past 20 odd years - being chronically tired is not good for working in most jobs, as the readers would know already.

    I look hard for options, possible solutions to working while having this terrible illness, in 21 years never found one that really fits. Working is the only thing that will fix my financial situation, and is the one thing I cant really do. It sucks.

    I have not obtained any treatment for this, as I know there isn't one worth looking at, other than the lifestyle changes I have already made. I am very reluctant seeing any so called specialists, as from my very extensive contact with medical people, they will get paid no matter what advice they provide.

    CFS is my main driver for some depression I fight off from time to time. Life has been a real struggle, with small glimmers of hope here and there. They are the things I try to remember - birth of my kids etc.

    Still searching for a solution......

  11. pvfs123
    pvfs123 avatar
    10 posts
    21 September 2016 in reply to blueangel

    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.

    2 people found this helpful
  12. littleone13
    littleone13 avatar
    8 posts
    27 October 2016 in reply to blueangel

    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

    1 person found this helpful
  13. Denv12
    Denv12 avatar
    40 posts
    8 December 2016 in reply to blueangel

    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.

  14. CheeseSlices
    CheeseSlices avatar
    48 posts
    8 December 2016 in reply to pvfs123

    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.

  15. Denv12
    Denv12 avatar
    40 posts
    9 December 2016 in reply to pvfs123

    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.

    1 person found this helpful
  16. NewToCFS
    NewToCFS avatar
    1 posts
    3 February 2017 in reply to pvfs123

    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...

    1 person found this helpful
  17. Sophie_M
    Community Moderator
    • Works for beyondblue moderating these forums
    Sophie_M avatar
    1417 posts
    3 February 2017 in reply to NewToCFS
    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. 
  18. pvfs123
    pvfs123 avatar
    10 posts
    10 March 2017 in reply to NewToCFS
    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.
  19. Squinky
    Squinky avatar
    1 posts
    16 March 2017

    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.

  20. pvfs123
    pvfs123 avatar
    10 posts
    18 May 2017 in reply to Squinky

    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?

  21. pvfs123
    pvfs123 avatar
    10 posts
    18 May 2017 in reply to CheeseSlices

    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.

  22. pvfs123
    pvfs123 avatar
    10 posts
    18 May 2017 in reply to NewToCFS

    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.

    1 person found this helpful
  23. pvfs123
    pvfs123 avatar
    10 posts
    18 May 2017 in reply to pvfs123

    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.

    1 person found this helpful
  24. Denv12
    Denv12 avatar
    40 posts
    18 July 2017 in reply to pvfs123

    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.

    1 person found this helpful
  25. Simmo123
    Simmo123 avatar
    19 posts
    6 August 2017 in reply to RJSDriver
    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 .
    1 person found this helpful
  26. Simmo123
    Simmo123 avatar
    19 posts
    6 August 2017 in reply to pvfs123
    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
    1 person found this helpful
  27. Just Sara
    Champion Alumni
    • Community champion volunteers who are not currently active on the forums.
    • A member of beyondblue's blueVoices community
    Just Sara avatar
    3258 posts
    6 August 2017 in reply to Simmo123

    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

  28. Simmo123
    Simmo123 avatar
    19 posts
    6 August 2017 in reply to Just Sara
    Thanks new at this don't realy know what I'm doing
    1 person found this helpful
  29. Simmo123
    Simmo123 avatar
    19 posts
    6 August 2017 in reply to blueangel
    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
    1 person found this helpful
  30. pvfs123
    pvfs123 avatar
    10 posts
    28 August 2017 in reply to Simmo123

    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.

    1 person found this helpful

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