Help with chronic fatigue illness

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. 

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 😊

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.

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