Help with chronic fatigue illness

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Hi there.

I am wondering whether anyone has any advice/suggestions that could help me with my chronic illness.

I am a 26 year old male in Australia, and have been diagnosed with chronic fatigue syndrome, which I have been managing for over 2 years now. This diagnosis is by no means conclusive – I think it's just what doctors use to label this sort of illness when they don’t know what it is. 

My symptoms include:

- sore eyes (ie mild burning, sore to move, sensitive to light);

- headaches;

- hot and cold flushes, and poor temperature regulation;

- fatigue and low energy;

diarrhoea;

- swollen glands under my chin and around my neck;

- mildly foggy vision; and

- other flu-like symptoms.

The things that tend to set off these symptoms include:

- lack of sleep (I usually need 9+ hours);

- physical activity / exercise (I have practically eliminated all exercise from my lifestyle); and

- stress.

It is possible that my illness was initially triggered by blue-green algae exposure, but I have no previous illnesses or medical history of note.

I have seen a whole host of health professionals (including various GPs, a chronic fatigue specialist, naturopaths, a neurologist, an acupuncturist etc.) without any success. I have taken various forms of medications to try and treat this to no avail. I'm not taking anything currently.

If you have any information or advice that you think might help, it would be greatly appreciated!

Thank you so much in advance!

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11 Replies

  • Posted

    Tedflen--I believe ME/CFS has been shown to be a very specific illness--not a diagnosis that you get when doctors don't know what you have. The Institute of Medicine (IOM) in the U.S. has identified very specific core symptoms that can be used to diagnose ME/CFS: fatigue and impairment, post-exertional malaise, unrefreshing sleep, cognitive impairment, and orthostatic intolerance. This is a relatively new way to view this illness. There is currently no recognized treatment per se, but some people have improved with, for instance, anti-virals, like Valcyte. Some have found their way to better health by trial and error. I think management of the illness through pacing and rest is generally thought to be a very helpful way to deal with ME/CFS. A lot of us now use heart monitors to make sure our heartbeat doesn't get too high, because that can cause a crash. I use a simple watch-type device that shows my heartbeat continuously. Above all, don't try to push yourself, and stay within your energy envelope. 

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    • Posted

      Thanks so much for your response Jackie, and sorry for taking a while to get back to you.  I might ask my doctor about Valcyte. 

      The heart rate monitor also sounds like a good idea.  If you don't mind, I'd be interested to know which watch device you are using - I might check it out?

      Thanks again!

      Tim

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  • Posted

    Hi I believe that it is a symptom of something and not an illness of it’s own. It’s finding the root cause that is hard. I find I seem to feel worse the more I read and worry about it. I have started the rcp (root cause protocol) it’s a Facebook page so I would recommend a look if you can. I have only been trying it for a couple of weeks so no advice yet.   

    My symptoms seem to be hormone related, have you had any checks there, different for men I know but still have huge impact on how you feel. 

    Good luck 😊

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  • Posted

    Hey,

    I wanted to respond to you because I'm also in Australia and going through similar stuff. I haven't yet been diagnosed, although I'm seeing a CFS specialist in a few weeks and I hope it will lead to a confirmation of what's wrong with me.

    When I first started to experience symptoms, my commute to work consisted of 10-15 minutes of walking and catching two trams on busy, noisy roads where I would often be waiting, in the middle of traffic, for up to 20 minutes. I would be ill for periods of up to 2 weeks, barely getting through each day.

    I now only have a flareup maybe once every few weeks, always as a result of some identifiable trigger (because sometimes I misjudge my stamina, or am just plain irresponsible...I'm working on it!)

    Here's what I've changed:

    - Moved closer to work. I only have to walk around the corner and take 1 short tram ride now. Because the commute is so much shorter, I don't have to get up as early, so I can also get more sleep. (I'm certainly not suggesting this is an option for anyone else, but it does go to show just how much these small things can make a difference)

    - Trying to avoid anything that would make my heart rate go up: I now take the elevator instead of stairs, look for the shortest routes when walking anywhere, etc

    - Stopped setting my alarm in the morning; I go to bed at a consistent time and wake up at a consistent time, naturally, meaning my body always gets the amount of rest it needs

    - Shifted my work schedule up to an hour later in the day, depending on how I'm feeling (of course not everyone can do this; I'm very lucky that my working hours are flexible)

    I've noticed that no matter how early I go to bed, my body just feels consistently horrible early in the day, and the earlier my routine the worse I feel. This is why I've settled on a late work routine. Maybe whether you're a "morning person" or not is particularly important for CFS sufferers? I don't know.

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  • Posted

    Hi

    If it's M.E. then the main sympton is fatigue made by worse by exertion which is not eleviated by rest. Other symptoms as you've described also can be present, such as what's often referred to as brain fog, sore throats, aching painful muscles, heart palpitations, muscles twitching.

    I've had M.E. for 27 years to different degrees. I had what I call a long-time remission for eight years, but got ill again with mild symptoms five years ago. I am now recovering.

    Key to recovery was as follows:

    1) Careful pacing. I follow what's called the 70% rule. I only do 70% of what I feel I can do. You have to listen to your body to judge. Watch the pattens of the fatigue, and when exertion triggers it. If you have to do more, rest for two or three days after.

    2) Avoid stressful situations as much as possible

    3) Keep a positive mind and use things like mindfulness meditation or CBT, whatever works for you, but don't get negative or give up hope.

    4) Eat a good diet, avoid junk food and additives. I make lots of nutri-smoothies with plenty of vitamin C and mineral rich foods. Make sure you get enough B12. Avoid caffiene, tea and coffee at least with meals because they stop you absorbing nutrients. Grains, nuts and seeds all have something in them called phytic acid, this is also an antinutrient. You don't have to give up grains altogether, but if you can have meals apart from them with lots of vitamin C and minerals it'll help. Bell peppers and lemon are packed with vitamin C, mussels have lots of B12. If you're veggie or vegan eat food fortified with B12.

    5) I found acupuncture along with Chinese herbs very helpful and a crucial part of recovery. Find a good one who's trained tradtionally, you have to ask about. I didn't have any money because I only now work part-time so I rasied money on crowd funding. With a positive plee people seem happy to give.

    6) Imagine it's like reconditioning an engine with a battery that's not recharging properly. You have to leave it on charge longer. Then when you recondition the engine it is the combination of lots of different things that ADD UP to make a big difference, changing the spark plugs, retunign the carboretors. Therefore, get lots of rest, just do things which are therapuetic, it's like your immune system has been knocked, let it come round slowly. At the time do every single thing you can to support your immune system, (everything) that's possible.

    Pacing, diet, state of mind, herbs, complementary therapy. keep it straight forward. I have got well again twice now with this holistic approach. All the things I do are supported by some evidence and common sense. For example acupunture is proven to work in pain reduction at least using MRI scans. Herbs are known to have healing properties. We know it;s best to avoid stress. We know how important diet is. Pacing, the 70% rule o better still 50% maybe does make sense.

    The hard part is accepting your limits, it's tempting to fight it, to keep pushing yourself. It's not an illness you can beat by fighting it, you have to nurture the recovery.

    I hope that helps.

    best wishes

    Steve

     

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    • Posted

      Hi Steve

      Thank you so much for your response, and sorry for taking so long to get back to you.

      Your advice is really helpful.  Some of it I have already considered but should really focus on.  I was not aware of phytic acid in grains/nuts, but that is worth considering because I do eat quite a bit of grains/nuts.

      Is there someone you would recommend for chinese herbs? I have tried acupuncture with no success, but he did not offer any chinese herbal medicines.

      Cheers

      Tim

      Thanks again!

      Tim

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    • Posted

      Hi Tim

      I only found out about pyhtic acid recently too. The thing is you do need grains, nuts, seeds, and also phytic acid is an antioxident. This is the trouble with nutrition, it can be full of contradictions. My own solution was just to have some nutri-smoothies seperate when I could, with lots of vitmain C rich foods with all meals. I use brocilli a lot, not sure what foods you have down under.

      When I got a long-term remission for eight years I was able to do coast to coast bike rides over the Pennines in the UK. This was 4-5 day ride of 230 miles over peaks of 1,735 feet with all my camping gear on the the bike rack. Okay, not that massive achievment compared to some, but to come from being housebound, bedbound and hardly able to walk at times it was a big achievement.

      I'm starting to get back into a bit of cyling, but it's hard. I did sixteen miles on Sunday, and then on Monday, I went for a walk for an hour and after I hit a wall, I couldn't do anything. I rested, and now I'm okay again, so not a big relapse.

      The symptoms I have at the moment are at the mild of the scale, and so I can still do stuff. I work about 10-12 hours a week dog walking and gardening.

      I'm lucky to have a very good chinese medicine practitioner. She trained in China. The herbs she gives me are ready made pre-prepared and come in plastic bottles. You should be able to get them from your Chinese herbalist. You can buy them on amazon, but you need to know which ones to take. It costs around £30 for a months supply.

      When I was first ill I did go to a tradtional herbalist. Theu gave me a tincture with all sorts of herbs in. I thik that maybe really helped as well. It had in things like milk thistle, liquorice, gingko biloba - I don't know what else. Some people use ashwagandha because it stimulates the immune system.

      By the way, if you do get some remissions don't immediately upgrade/increase your activity. Alllow some time for the rememisions to consolidate. You have to use your instincts a little, but when the time seems right grade up a little, only gradually.

      Since I gave up coffee and tea and started on the nutri-smoothies my eye sight has improved a bit. I'm 57 and I'm long-sighted which is caused as you get older by less nutrients getting to the lense. I guess I must be absorbing more nutrients.

      Have you heard of NLP. There's someone here in UK has developed something called the lightening process. https://lightningprocess.com/step-1-lp-home-study-section/

      I've never tried it, I think they have some success with Chronic Fatigue/M.E. but not when it is more severe maybe. I'm a Budhdist, and so I have all sorts of wonderful healing meditations I can do. Buddhism also encourages you to try to see sufferign as an opportunity to grow spiritually, for example, you can increase your compassion for others. It may be helping program my brain to heal my body like NLP. Anyway, if you're not religious perhaps NLP can help. I'm not totally sure about the lightening process, but it might be worth looking into. https://www.theguardian.com/society/2017/sep/20/controversial-lightning-process-helps-children-with-chronic-fatigue-syndrome-me

      There's also  an osteopath in the UK who as developed something called the Perrin technique. This might work. You can buy his book on amazon much cheaper than on his website. Lots of reviewers said they tried the treatment and that it had transformed things, one or two said it made it worse. It helps the body detox, so maybe it happened too quickly for some people or they weren't on good enough diet and their body wasn't prepared well enough. (I don't know). Read thr reviews here. http://theperrintechnique.com/ You have to do your own research and weigh it up. I've not tried it. https://www.amazon.co.uk/Perrin-Technique-Chronic-Fatigue-Syndrome/dp/1905140126/ref=sr_1_1?ie=UTF8&qid=1528870746&sr=8-1&keywords=perrin+technique[/b]

      I think what maybe happens is, when you have certain treatments you can start to recover, therefore your body can go into what is called a 'healing crisis'. This is where maybe the toxins are being released and processed and you feel worse for a short while. If your system is very weak, then it can't even cope with getting better somehow. It's only my theory. I think if you're supporting your system, hopefully you'll be okay.

      I remember when i was very ill indeed and started with herbs I had to to ask the herbalist to be very gentle as the slightest thing could trigger a replapse. He didn't know what to do to help me detox and so he suggested taking a half a teaspoon of turmeric in the morning to help  and even simply that would trigger a bad relapse My system really was wrecked. If I had a meal with chilli in it, II was would be ill for three days, I could not go near paint fumes and even newspapers. I had this terrible chemical sensitivity, it sounds crazy, but it was true. My systems couldn'y cope with any toxins at all. 

      That reminds me blended soups are good with plenty of herbs and I find ginger, turmeric, and corriander all very good and helpful in cooking.

      I did also once try somethign called the Bowen Technique https://www.bowen-technique.co.uk/ . I got my first remission after this, it was amazing. Maybe it was just placebo, I don't know. I was also taking herbs at the time, resting and pacing etc. Like I say, it might not be just one single thing that cures it.

      Good luck, I hope you recover, I am glad my suggestions were of some help.

      Steve

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    • Posted

      Hi again. She keeps giving different ones, here are two samples. I see her tomorrow and ask which is good for general recommedation if I can remember. If I forget remind me. You can get the on amazon.
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