STORIES

Pt 4 Living with chronic illness

30th April, 2017   |    By Bethwyn   |    6 min read

Hi again and welcome to the fourth installment on chronic fatigue syndrome!! I have been a bit late on this post (sorry about that!), but I have an exciting topic for next week’s post – my own visit to a Naturopath. More on that next week!

Okay, this time I’d like to talk to you about treatments and management of chronic fatigue syndrome. Now, because everyone experiences different symptoms, different co morbidities, and everyone has a different experience of how CFS is diagnosed and how they are treated because of it, treatments are a difficult topic to talk about – so today I will provide an overview, but to work out what is best for you be sure to check with your doctor.

To start with, there is currently no cure-all treatment for people with CFS. Some treatments have worked for some people, but have done nothing for others. So I’m just going to mention a few of the more popular/successful ones here, and then talk a little bit more about management.

Cognitive-Behavioural Therapy

One of the most popular is Cognitive-Behavioural Therapy or CBT for short. As you can tell from the name, this is a form of psychological treatment – running under the whole idea that CFS is a psychosomatic illness. But it also targets key behaviours that may be less than helpful when it comes to getting better – such as indulging in alcohol, smoking, or having a bad diet and no exercise. Out of all the treatments I have looked at over the years, this is the most widely researched and mentioned in the literature (that is, journal articles, books, that sort of thing). With this treatment, you need to be able to access a qualified psychologist, preferably with some background and training in the application of CBT.

Finding a psychologist that works for you can be difficult, and they can be quite expensive – you’ll probably have to see them about once a week or so for an extended period of time. If you’re considering this treatment, it’s best to get a referral or recommendation from your General Practitioner (GP) if you can and check out the Medicare rebates that may be on offer.

Guided Exercise Program

Another treatment which has had some marginal success in this field is centered around exercise. Sometimes it’s just a guided exercise program that your doctor refers you to, but sometimes it’s referred to as Graded Exercise Therapy. This approach, however, is quite flawed in that it hasn’t really been tested on people with more severe versions of CFS. And, since one of the main symptoms of CFS is post-exertional malaise (you get tired after doing anything physical), its small amount of success is questionable. While exercise is important – getting even a tiny bit can help – being put in an exercise program as the sole treatment program may not be such a good idea.

Pacing

Finally, we have pacing. To refer back to a resource that I have used before, the ME/CFS organisation gives the clearest example of what Pacing is: “The challenge with ME/CFS is learning to live within an extremely delicate balance between energy supply and energy expenditure, and when this is out of balance symptoms will flare.

Pacing is a key strategy to keep ME/CFS symptoms manageable and to lead a consistent lifestyle. Pacing will assist a person to move towards a higher level of wellness. The alternative approach is the ‘push’ and ‘crash’ cycle, which is unhelpful, frustrating and can lead to further complications.”

The ‘push and crash cycle’ that they refer to would probably be more common with treatment approaches like the Graded Exercise Therapy. CFS sufferers (including myself) have a tendency to push themselves and get as much done as possible when they have episodes of relative health and lucidity, only to ‘crash’ and experience overwhelming pain, sickness and tiredness afterwards.

This is why pacing is such a gentle and helpful approach towards CFS treatment. It recognises that symptoms of CFS are constantly fluctuating, and attempts to bring some relative relief from this by a system of ‘pacing and switching’, whereby the individual would, for example, switch from computer work before it brought about negative results to talking, and then back to computer work. This means that the individual will not become worn out or over-affected by their environment and illness in one activity, but will still get a large amount of activities done. Of course, pacing also includes episodes of that all-important rest. As such, pacing is not so much a cure – more helpful advice and effective management of the syndrome.

Help and Support

Finally, I’d like to talk to you about professionals that can assist with a road to recovery. Many sources recommend having not a single professional working on treatment, but a team of them.

The list is extensive:

  • General Practitioners
  • Osteopathic Physicians
  • Internists
  • Rheumatologists
  • Neurologists
  • Infectious Disease Specialists
  • Pain Management Specialists
  • Endocrinologists
  • Gastroenterologists
  • Cardiologists
  • Immunologists
  • Orthopedists
  • Traditional Chinese Medicine Practitioners
  • Naturopaths/Herbalists
  • Ayurvedic Practitioners
  • Chiropractors
  • Physical Therapists
  • Manual Healers/Bodyworkers.

A VERY extensive list. I have seen some of these professionals in passing (that is, perhaps once or twice), but my current team consists of my GP, my Chiropractor, and, now, my Naturopath. The reason I started seeing a Naturopath is because my conditions have been getting a bit worse lately – resulting in me being in pain a majority of the time.

I have high hopes that they will be able to get me back on the right track, but it’s going to be a long road!

To summarise what I’ve said – there is no single treatment for CFS, but there are some that have had success with others. It is important to know what symptoms you are experiencing, and discuss these with your medical practitioner (or any specialists that you see). And, finally, sometimes the best treatment isn’t a cure-all, but a simple step towards managing how you feel.

Thanks for reading, and I look forward to writing my next entry on Naturopathy and alternative medicines!

To read the other stories from Bethwyn on living with chronic illness


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Chronic illness
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