More Than Tired

By Sharon Livingstone

Misunderstood, misdiagnosed and poorly funded, Chronic Fatigue Syndrome (CFS)* affects between 101000 and 240000 Australians.

According to CFS support organisation, Emerge Australia, CFS is a complex, multi-system, neuroimmune condition with a multitude of symptoms related to the dysfunction of:

  • The brain
  • Gastro-intestinal system
  • Immune system
  • Endocrine and cardiac systems.

While the exact cause of CFS is unknown, it may involve:

  • Genetic predisposition
  • Acute or chronic infection (including viral, bacterial and/or parasitic infections – for example glandular fever, Q fever and Ross River fever
  • A flu-like illness
  • Exposure to toxic chemicals, environmental pollutants or heavy metals
  • Immunisation – there have been some reports of ME/CFS onset following certain vaccinations
  • Severe physical or emotional trauma.

As an invisible illness, you can’t tell by looking at someone that they have CFS.

Symptoms

Symptoms of CFS include:1

  • Post-exertional malaise as a result of minimal cognitive, emotional or physical effort
  • Sleep problems/disturbances
  • Widespread pain and headaches
  • Neurocognitive dysfunction: short term memory loss, impaired concentration, confusion, disorientation, hypersensitivity to light and sound, emotional overload
  • Problems with dizziness and balance
  • Problems with body temperature (including intolerance of extremes of temperature) and weight
  • Recurrent flu-like symptoms
  • Gastrointestinal problems (e.g. nausea, abdominal pain, bloating, irritable bowel syndrome)
  • Sensitivities to food, medications, odours or certain chemicals.

I have CFS – Here’s My Diagnosis Story

25-year-old Rianna Giraud was diagnosed with CFS after living with symptoms for 9 years.

(image source: Rianna Giraud)

“After contracting glandular fever in 2008, I spent 6 weeks bedridden with my mum waking me up to do basic tasks like going to the toilet. Once I was able to go back to school, I had approximately one day off each week. I gave up basketball and swimming, sports I excelled at, as my energy levels didn’t permit it. After a full day at school, I rarely had energy for things like assignments and homework. Luckily, when I reached Year 12, I was accepted into a university program which allowed me automatic entry into my chosen course as long as I passed the small university course during Year 12. I focused all my energy into that, whilst barely passing at school, so I had a chance at a future in design. Once at uni, the battle continued. Not only with my energy levels, but finding answers and solutions from my doctors. My recurring tonsillitis, achey body and poor immunity were put down to stress. Stress was never something I had issues with. I have always been very carefree and I found this a lazy diagnosis. Finally, I was recommended to see a doctor who looks at things a little differently. His motto is “treat the cause” compared to the “treat the symptoms”. (In 2017) I received a diagnosis of chronic fatigue as a result of Epstein Barr virus.”

Massage Therapist Deb Carroll’s CFS diagnosis took 2 years.

(Image: Deb Carroll)

“I was a full time student with a full-time business, a husband who travelled a lot and two kids under 12. I was a competitive triathlete, I played hockey and our family holidays included bushwalking and camping. I commuted to work on my bicycle. My onset was obscure. I got a cold in 2004. I ended up hospitalised 6 months later with a serious lung infection. There were a LOT of other factors involved. I was under some serious stress with both my business and family at the time. Diagnosis took two years, during which my marriage fell apart, and only after several hospitalisations where every test under the sun was made with no outcomes. I could barely walk and when I could move enough to work I did it sitting or lying down. I was sent home to a psychiatrist and (an exercise programme) administered by a physio. I walked out of my business, sold all my sell-able possessions and moved in with my mum and dad. The kids stayed with their dad as I was deemed unfit as I could barely care for myself. Once I was able to stand unassisted, I moved in with some friends (then) couch surfed for two years, slept in my car and showered at the uni.”

Ashley Kalagian Blunt, author of My Name is Revenge, wrote about her 6-month journey to CFS diagnosis.

Massage for CFS

People with CFS obviously have massage. Apart from my own brief survey which showed around 30% of massage therapists have treated people with CFS, other surveys of people with CFS confirm that massage is used as a management tool. Although one study of US people with chronic fatiguing illnesses2 found that the most commonly used CAM was prayer, it also reported:

“People with CFS-like illness were significantly more likely to use body-based therapy (chiropractic and massage) than non-fatigued participants (OR = 2.52, CI = 1.32, 4.82). Use of body-based therapies increased significantly in a linear trend across subgroups of non-fatigued, prolonged fatigued, chronic fatigued, and CFS-like subjects (p-trend = 0.002). People with chronic fatigue were also significantly more likely to use body-based therapy (OR = 1.52, CI = 1.07, 2.16) and mind-body (excluding prayer) therapy than non-fatigued participants …”

An unverified survey3 apparently conducted by the CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) Association of America in 2013 found “Almost half used alternative therapies such as massage therapy, yoga, acupuncture and meditation to treat CFS”.

With little/no information on HOW massage should be undertaken, we rely on our commonsense to devise a treatment plan. This involves treating each CFS client as an individual with different requirements to every other CFS client we’ve ever treated.

There are common themes amongst the clients I’ve seen with CFS: The intake involves a lot of talking and there’s always tears. Those tears may be for many reasons but they’re probably something to do with how big an impact CFS has on the client’s current way of existing.

Something commonly reported is post-massage fatigue. This massage side-effect was enough for Ashley to stop getting massages:

Ashley Kalagian Blunt at the launch of her book (image: Sharon Livingstone)

“I used to love getting massages, both remedial ones for back/neck issues, and just for relaxation. But once I got CFS I had to stop completely – a massage is just as tiring for me as trying to go for a jog. Every time I got one, I ended up exhausted in bed for 1-2 days, so I stopped because I already spend enough time in bed.”

For Rianna, who had regular massages before she got CFS, it’s all about planning:

“I am often exhausted by it. Generally I plan only the massage for that day in case I need to nap afterwards. I find the next day I am extra achey, but from then on I see rather vast improvements.”

Deb now has fortnightly bodywork, utilising a variety of modalities and self-treatment, however, initially:

“Remedial work knocked me for 6. I’d sleep for hours after and suffered excruciating DOMS for days post treatment. Cupping was a disaster too; subsequent bruising from cupping actually led to open bleeding sores.”

Like Deb, Rianna finds her symptoms reappearing around 2 weeks after her massage.

The Treatment Plan

Massage therapy may be able to assist with symptoms and provide short-term relief. It can’t, however, “fix” or “cure” CFS.

AMT member, Gabby Griffiths reminded me of something Robert Libbey spoke about during his LAST workshops at the 2018 AMT Conference, which was along the lines of, if 100% (in health/wellness/pain-free) is not achievable, then what do you hope to get from the treatment today? That philosophy is helpful in determining a treatment plan for clients with CFS.

The respondents to my survey consistently said that massage pressure varied from CFS client to CFS client. It was down to individual preference.

Massage Therapist Suz Wenzel explained how she works with her CFS client:

I base my treatments on his needs, his pressure requirements for what he felt. Sometimes it’s a medium pressure over the same part of the body (as in a ‘good pain’ sensation and he wants that release from the tension or pain). (It) all depends on their pain tolerance on the day and what they feel they want with type or style of treatment and depth of pressure.

As a massage therapist with CFS, Deb adds:

“You end up being more than a massage therapist. You’re a counsellor, advocate and much more. If you take someone on remember you are likely to be in there for the hard yards. I find keeping them positive the most important thing in each treatment. These folks have to re-imagine themselves. Create another them. They will never be able to do the energetic things they once used to enjoy. … Be patient. Be flexible. This condition is so very variable.”

Working with someone with CFS may require business flexibility too. As Deb notes:

“Sometimes they will simply not be able to get to an appointment.”

According to my survey, the frequency of massage varied from weekly/fortnightly sessions to spasmodic. For some with CFS, it’s about prioritising how their daily energy is used in what is commonly known as spoon theory. One of my CFS clients has children and prioritises being able to play with their children over massage when their energy levels were low.

Other Stuff

With something like CFS, which turns someone’s world upside down, the client knows the condition better than any massage therapist (without CFS). They have researched the treatment options. They have read all the articles. They have tried all the treatments, supplements and seen all the specialists to improve their health. Although well-meaning, asking someone with CFS “Have you tried …” is discouraged. It’s time to listen to the person and learn from their experience.

Deb Carroll manages her working week by factoring in time for sleep in the middle of the day. Ashley Kalagian Blunt works part-time and reduced hours on the days she works. Rianna Giraud started her own design business which enables her to set her own hours and rest when she needs to.

The Last Word

Trying to find information about treating people with CFS is like swimming up a creek of crunchy peanut butter. With little research on any benefit or contraindication of massage for people with CFS, it is obvious that more research is warranted.

*Although Chronic Fatigue Syndrome is also known as Post-Viral Fatigue Syndrome (PVFS) or Myalgic Encephalomyelitis (ME) or abbreviated as ME/CFS, for the purposes of simplicity, this article only refers to Chronic Fatigue Syndrome or CFS.

Source

1. http://emerge.org.au/mecfs/symptoms/#.XTE6I_IzaM8

2. Complementary and alternative medical therapy utilization by people with chronic fatiguing illnesses in the United States by James F Jones et al, BMC Complementary and Alternative Medicine 2007; 7:12 April 2007

3. https://ammes.org/alternative-and-complementary-therapies/

Further Reading

Complementary and alternative medicine for patients with chronic fatigue syndrome: A systematic review by Terje Alraek et al, BMC Complementary and Alternative Medicine 2011; 11:87 October 2011

Chronic Fatigue Syndrome Myalgic Encephalomyelitis – Primer for Clinical Practitioners 2014 Edition

The Voice of the Patient – A series of reports from the U.S. Food and Drug Administration’s (FDA’s) Patient-Focused Drug Development Initiative – Chronic Fatigue Syndrome and Myalgic Encephalomyelitis Report Date: September 2013

Epstein-Barr Virus May Be Turning On Pathogenic Genes In ME/CFS By Cort Johnson, ProHealth.com, 13 July 2019

As Terrible Lotteries Go by Ashley Kalagian Blunt

Symptomatology A-Z by Ashley Kalagian Blunt

The author thanks Deb Carroll, Rianna Giraud and Ashley Kalagian Blunt for sharing their experience of life and massage with CFS.

About the Author

Sharon Livingstone is a massage therapist in Sydney, NSW. A love of sport drew her to the industry but discovering job satisfaction came from helping people live with less pain keeps her in it. Sharon is a writer, keen bushwalker and frustrated traveller who is also a coffee snob.

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