What Is Chronic Fatigue Syndrome ME – It’s Not A Real Illness Is It?

What Is Chronic Fatigue Syndrome ME – It’s Not A Real Illness Is It?

what is chronic fatigue syndrome me - doctor visit

Are You Really Even Sick?

Many people with chronic fatigue syndrome have an extremely severe form of the illness. They are completely bed bound and need round the clock care because their illness is completely debilitating. It is impossible for them to walk and they need a wheelchair for mobility on the rare occasions they are able to get out of bed for short periods of time.

Their sickness is completely visible to all and there is no doubt they are suffering from a debilitating illness.

There are so many causes of chronic fatigue syndrome that sufferers experience this illness with varying degrees of severity. In fact some people with a mild version of the illness recover after time without any treatment at all.

But there are many people, and I was one of them, who fall somewhere in between these two extremes. And although very unwell they do not appear ill as there is no obvious outward manifestation of the illness.

The standard response from the very few people I told that I had chronic fatigue syndrome was a baffled look.  Some of them were interested enough to ask me ‘what is chronic fatigue syndrome ME’? However, I could tell by the way they were asking the question that they didn’t believe it was a real illness.

How could I have an illness when I didn’t look ill? They probably thought either I was a complete hypochondriac or a malingerer.

Many people don’t mention their chronic fatigue syndrome due to misunderstanding about the illness. The remnant of a leftover stigma from the 80’s when chronic fatigue syndrome was labelled ‘yuppy flu’ still lingers.

The only outward sign of my illness was it made me put on weight. I gained twelve kilos of extra weight. Most people probably thought  ‘geez she’s porked up a bit’, not knowing the horrible weight gain I just couldn’t shift was due to my illness.

If you are one of the many sufferers of chronic fatigue syndrome who fall somewhere in the middle and you are still semi functional, not ‘looking ill’ can add complexity when dealing with your already baffling illness.

 

First Step – Acknowledge You Have An Illness

My particular form of chronic fatigue syndrome started with adrenal fatigue  And it took me many years before I was to acknowledge the progress from adrenal fatigue into something else and to actually admit I was experiencing a real illness that was not only hanging around but was progressively getting worse.

Up until this point of real acknowledgement my attitude was that I had a ‘pesky fatigue thing’ that I was dealing with. At times I seemed to have a handle on it and I felt a bit better and I would be lulled into the belief that it had simply gone away.

But other times I suffered a relapse that put me flat on my back for several days or weeks at a time. As time went on though the relapses became more frequent and my health kept deteriorating until I was forced to admit I really was ill. At one stage I was bed bound for a period of a month and by then I was in a bad state.

what is chronic fatigue syndrome me - woman in bed

If it was difficult for me to face the fact I had a ‘real’ illness, it was unrealistic to expect family and friends to understand that what I was dealing with was very real. I was definitely in denial that I was actually ill.

I’m sure I am not alone in trying to shrug off my poor health. I didn’t exactly hide it from people, but I tried to cope with it on my own. By the time my health really got worse I was living alone in a foreign country so family and friends didn’t have any idea how bad I was.

At this stage I had pretty much become a hermit as it was the only way I could cope with chronic fatigue syndrome. With decreasing energy I gave up working full time and even part time work was difficult at times.

The effort used in working  for a few hours meant I had little energy for anything else and I’d climb back into bed to recover until I could recoup enough energy to work again.

However, a family holiday was planned and we were all meeting up in New York, the city that never sleeps. Admittedly, it probably wasn’t the best choice of ‘holiday’ destination for someone with chronic fatigue syndrome. But, I had just started treatment with my naturopath and in the very early stages of my recovery I was feeling a little better.

On meeting up in New York, my family members who hadn’t seen me for around two years tried to hide their shock at how much weight I had gained and while they didn’t mention it, I could sense their surprise

By this time, under the care and guidance of my naturopath I was finally acknowledging my illness. This gave me the courage to tell the family that there would likely be some days when I wouldn’t be able to join them on all of the sightseeing trips they were planning. I knew that at my current low energy levels I would be unable to cope with it.

I struggled throughout the holiday and after one particular sightseeing day was so exhausted I thought if I didn’t lie down I would die. OK, I know that sounds a bit dramatic but my energy was so depleted by this stage I realized I had seriously over done it. In fact I was kind of scared I had set back my meager recovery.

Needless to say, chronic fatigue syndrome delivered payback when the following day I was good for nothing. I  had to spend time alone resting up. It was at this point my family began to understand there actually was something wrong with me.

 

People Just Don’t Get It…..And It’s No Wonder

It’s no wonder folks have little understanding of chronic fatigue syndrome when people such as myself and many millions of sufferers hide the extent of their illness as they simply try to ‘soldier on’ and get through each day. With no answers from the medical community about how they can recover what else can they do.

They can’t find answers not only for their overwhelming fatigue, but the array of other bewildering symptoms they experience. Many people cope by living a very condensed life often having to reduce work to part time hours and sometimes completely giving up work due to their limited energy reserves.

Chronic fatigue syndrome like many chronic illnesses can be a very isolating illness to live with. Often sufferers lose friends as their social lives diminish when they simply do not have enough energy to join in activities they formerly enjoyed.

what is chronic fatigue syndrome me - hand at window isolation

Lack of acknowledgement that chronic fatigue syndrome is a ‘real thing’  persists in part because not only is it difficult to get a diagnosis but, there is no real understanding of the illness in standard medical circles.

Your doctor can’t supply you with a drug to fix it, because they don’t know what they are fixing.

 

What Is Chronic Fatigue Syndrome ME ?

Firstly, let me say that chronic fatigue syndrome IS a real illness. Although previously a controversial diagnosis, chronic fatigue syndrome is now accepted as a medical condition. It is also known as myalgic encephalomyelitis (ME) and systemic exertion intolerance disease (SEID).

There is no specific test that can provide a diagnosis of chronic fatigue syndrome. Rather, your doctor will come to the diagnosis by a process of elimination ruling out other possible illnesses first. And,  unfortunately a diagnosis can take some time to obtain as one of the criteria is that you have the fatigue for at least six months.

Also because chronic fatigue syndrome is a multifactorial illness and many other conditions present similar symptoms it can be a difficult illness to diagnose.

Diseases presenting with similar symptoms include:

  • Lyme disease
  • Multiple sclerosis
  • Mononucleosis
  • Fibromyalgia
  • Sleep disorders
  • Hypothyroidism

 

How Does Chronic Fatigue Syndrome Affect The Body?

Its main characteristic is extreme fatigue that is not relieved by rest. However, the debilitating fatigue can also be accompanied by a whole raft of other symptoms including:

  • Cognitive issues including lack of concentration and focus, brain fog and memory issues.
  • Muscle pain.
  • Swollen and tender lymph nodes.
  • Non refreshing sleep.
  • Frequent headaches.
  • Recurring sore throats.
  • Orthostatic intolerance – feeling dizzy or lightheaded when going from lying to standing position.
  • Exertional malaise – feeling the effects of exertion up to two days later.
  • Inability to exercise.
  • Sensitivity to light and sound.

Chronic fatigue syndrome is a disorder characterized by extreme fatigue or tiredness that doesn’t go away with rest and can’t be explained by an underlying medical condition. It is a long term complex illness that affects many body systems.

The causes of chronic fatigue syndrome aren’t fully understood by the standard medical community. Theories include psychological stress, viral infection(s) or a combination of different factors both physical and mental.

Some people with the illness experience worsening symptoms from either physical or mental over exertion, being more affected by one or the other. But many people find a combination of both mental and physical exertion affects their ability to function normally.

Over exertion of either can result in an energy crash putting them in bed for a couple of days or more until they can recover their energy.

 

 

How Do You Fix Chronic Fatigue Syndrome?

The bad news is that there is currently no ‘cure’ for chronic fatigue syndrome from standard allopathic (science based) medicine. Your doctor can help with symptom relief by prescribing pain medication, antidepressants and sleeping pills as a way to help you ‘manage’ your illness.

Some of the more enlightened doctors may also give you advice on ‘pacing’ to help prevent energy crashes. However, this is simply to help you cope, and is not a cure for your chronic fatigue syndrome.

When you are in the midst of your illness ‘pacing’ or staying within your energy envelope is essential to help you manage your available energy.

The important element to understand about chronic fatigue syndrome is that something or more likely several ‘somethings’ are causing your illness. And until you get to the bottom of what those somethings are, you will be unable to recover.

The good news is that once you do find out the root causes of your particular form of this debilitating illness, you CAN recover.

I had chronic fatigue syndrome for eight years and once I found the root causes of my illness I made a full recovery. It took two years of careful and consistent testing, effort and treatment compliance but I did fully recover.

Working with a naturopath/functional medicine practitioner experienced in treating chronic fatigue syndrome will ensure you receive the right care and guidance on your journey to recovery.

 

What To Expect From Natural Treatment

You might not be familiar with visiting naturopaths/functional medicine practitioners and may be very wary about being treated by one. But, I would urge you to get over any belief you may have that they use all sorts of hocus pocus and their treatments don’t work.

The aim of naturopathy is to provide the body with the nutrients and conditions it needs to heal itself,  with the focus on treating the disease itself rather than just the symptoms.

Naturopaths/functional medicine practitioners use a system of holistic healing providing healthcare methods drawn from several traditional natural healthcare systems. Healing systems and methods that have been in use for centuries.

what is chronic fatigue syndrome me - holistic healing symbol

By using a variety of treatments including homeopathy, herbal medicine, nutritional supplements and diet the aim is to bring the body back to a balanced state. Additionally they may recommend massage and acupuncture therapy as well as counselling too for overall symptom relief and to aid in healing.

If you already have a diagnosis of chronic fatigue syndrome, you may have had a battery of tests carried out by your doctor. When you visit your naturopath be prepared for more testing to be run.

After taking an extensive medical and symptom history you will probably need to undergo further testing. Blood, work, saliva, hair and poop samples may all be taken for analysis.

This part of the treatment can be frustrating.  As ‘Sherlock Holmes like’  your naturopath starts to look for clues from your test results that will point the way to the root cause(s) of your illness. Your results might uncover something very quickly, or it can take some time before the clues become apparent.

It is definitely a puzzle that has to be put together and this is where a naturopath with experience in treating fatigue issues is essential.

Working with alternative health professionals requires that you take responsibility for your own recovery and health. There is no single pill they can give you that will make you ‘all better’. And you will be expected to be an active participant in your own recovery.

You may need to make some drastic changes to your diet if you have been making poor food choices or if food sensitivities are found during testing. Your lifestyle may also need an overhaul too if bad habits are contributing to your illness.

These types of changes can be both uncomfortable and confronting for many people. It helps to keep reminding yourself of how much better you are going to feel once you make the necessary changes.

Additionally, if you have been ill for a while, treatment can take quite some time before you start experiencing positive changes in your health condition. Patience and  compliance will ensure you get to the end point, i.e., recovery from chronic fatigue syndrome and all its baffling and debilitating symptoms.

Nutrition, natural supplements and herbal remedies do not work overnight, it takes time for them to start working and gradually bring about balance to your body systems again.

Particularly if you have been suffering with chronic fatigue syndrome for some time, you will need patience and persistence to heal. Sometimes you may even seem to get worse.

If your body systems are in a poor state you might react to some of the nutritional supplements etc,. however making small adjustments to your protocol will get you on the right track.

It helps to realize that you won’t get better overnight and each small improvement in your symptoms is a reason to celebrate.

 

Putting It All Together

The first step to recovery from chronic fatigue syndrome is your own acknowledgement that you are ill. Reaching out to a natural health practitioner specializing in treating patients with chronic fatigue syndrome is essential to getting the right help you need.

Patience and persistence are needed while using natural treatment to recover from chronic fatigue syndrome.

Please feel free to leave a comment below. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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4 Comments

  • Sarah August 6, 2019 at 4:17 am

    Hi Ann, what did your Naturopath find as the root for your CFS and what did you do proceeding that?

    Thanks! 🙂

    • Ann August 6, 2019 at 4:09 pm

      Hi Sarah thanks for stopping by and leaving a comment. I worked with a very experienced naturopath who had suffered a very severe form of chronic fatigue syndrome herself during her teens. It was this that made her go into naturopathy. As you may know CFS is a multifactorial illness so there is rarely one cause. In my case it started with adrenal fatigue syndrome and thyroid issues which over the years affected other body systems and I also had very bad gut health, dysbiosis, candida overgrowth and a parasite. I also had food sensitivities, irritated bladder and was unable to tolerate any supplements. It took two years to recover but I finally did.
      Prior to finding this naturopath I had worked with others who were only treating adrenal fatigue and failed to carry out all the testing required to find out everything that was going on.

      • Sarah August 22, 2019 at 10:45 pm

        Wow, well that’s great to hear they were able to find some of the issues that were going on and able to work with you to get better! That’s very promising. 🙂

        • Ann August 23, 2019 at 1:17 pm

          Thanks for taking the time to leave a comment. Yes you can recover from CFS with the right help.

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