Chronic fatigue and fibromyalgia
Mindful Self-compassion – a helpful approach to managing fibromyalgia and chronic fatigue
As a fibromyalgia sufferer myself , I am only too aware of the impact on daily life having a chronic condition makes and the adjustments one makes to manage the symptoms. Knowledge is power, the more information that is provided the more chance this condition has of being recognised earlier and positive treatment plans put in place. Please keep scrolling down for my story and further links
http://www.fmauk.org/uk charity provides a lot of helpful information and new research continues to provide a way forward and a better understanding of this multifaceted and often isolating condition.
For me, Mindful self-Compassion has helped me manage the sympotms and related issues much more effectively, enabling me to lead a largely normal and productive life, along with dietry changes (we are all different) that work for me and some lifestyle changes- resting more, pacing myself,and listening to my body.
I am including here an exerpt from an article I wrote about myself for theMindfulness Association members’ Autumn newsletter 2014 in the hope that you might find some inspiration and consider exploring the Mindful self-compassion pathas part of your adapting, and healing journey.
“My story and mindfulness journey began in 1996 following a prolonged viral infection I was diagnosed with chronic fatigue syndrome – also referred to as M.E. I spent many years feeling deep shame and guilt and spent a lot of time in resistance- creating further suffering. I would fight through it and continue at a working pace and exercise regimes that often left me weak and unable to walk properly for days. I peaked and troughed over the years and my physical activities lessened- I gained weight – almost 2 stone.
In 2005 I was also diagnosed with fibromyalgia. This is a painful and debilitating condition and has a lot of overlap with chronic fatigue syndrome. Clinical research has begun to provide some answers for what has been a largely misunderstood condition. It is a disorder of the central nervous system. I tried to continue working at the same pace ( I have been a clinical hypno-psychotherapist since 1998) but found this increasingly impossible and something had to change- that something was me! I was resisting and ignoring- furthering my suffering…..”
“I began to feel a deep and profound sense of contentment which I had never felt before. Despite poor physical health I began to feel differently about myself and my relationships with others- an improvement, that with deep gratitude and appreciation, I can hand on heart (literally) say, continues to improve, and flourish…
In his book ‘The Mindful Path to Self-Compassion’ Christopher Germer describes the importance of bringing compassion and mindfulness together:
“The first step toward being at ease within the body is to pay attention to it. We need to know what ails us. Then we can respond with compassion.” (Germer, 2009)
In April 2014 I ran a MSC workshop for people with Fibromyalgia and ME and will continue to share this sacred gift of mindfulness meditation practice and self-Compassion that has helped heal me in so many ways, emotionally, physically, and spiritually.
I undertook the trip of a lifetime twice up to Holy Isle to complete the intensive Mindful self-Compassion (MSC) programme with Kristin Neff and Chris Germer with the mindfulness Association. This was a life changing experience, and coupled with the one year mindfulness training I undertook with the mindfulness Association, I feel an energy and vibration in my body that tells me I am healing and learning, and evolving towards being a happier, more fully present person and my life continued to transform daily in unexpected and wonderful ways.”
“Mindful self-compassion – bearing witness to one’s own pain (mindfulness) and responding with kindness and understanding (compassion).”
Collecting information for Fibromyalgia international Awareness Day 14th May 2015
ENVA: The European network for Fibromyalgia awareness
Fibromyalgia affects an estimated 14 million people in Europe. It has a devastating impact on those who suffer from the disease and also for those carers and families who are trying to support them. Also it imposes a large economic burdens on society and individuals.
Promote Fibromyalgia awareness to politicians, physicians, scientists and the general public on a European level
As Fibromyalgia is adopted by the European politicians by way of accepting the written declaration 69/2008. It is for ENFA to get the written declaration into action with a primary goal to get Fibromyalgia as a key topic in the European Health Programme.
Ways to reach that goal
In order to make that happen ENFA is working in a three pronged manner.
• ENFA has to strengthen the association by way of increasing membership and to improve their internal organization.
• ENFA has to work together with sister associations in order to get a bigger voice in Europe.
• ENFA has to work together with other European umbrella associations to get more involved in the policy making process.
ENFA has produced a survey to discover how fibromyalgia is treated throughout Europe. This will enable us to give evidence to the decision makers about any differences, expenses incurred and the widespread nature of the condition.
To do this we need as many people from as many different countries in Europe as possible. It will not be affective with only a few hundred responses, we need thousands!!!
Survey closes 14th April 2015
Please pass this message and the link as far as you can.
Thank you for your help.
for the survey click this link:
September 6th – 13th 2014 National fibromyalgia awareness week
This is an important week for any sufferer of fibromyalgia as it is our opportunity to raise awareness and let people know what we feel and also what helps.
In the September issue of the Fibromyalgia magazine, there is an exellent article discussing the benefits of hydrotherapy. In a recent survey (also covered on page 4 )conducted by the Fibromyalgia Association uk to mark May 12 international awareness day, on fibromyalgia sufferers, relaxation, meditation, and hydrotherapy came out on top as the most benefitted from non-drug interventions!
This certainly fits in with my own anecdotal experience of the benefits of a daily meditation practice and Mindful self compassion- this has changed my life for the better and helps me to manage the often debilitating symptoms of fibromyalgia and ME.
For further information about the Mindful self compassion courses I teachhave a look here
May 12 2014 International Fibromyalgia Awareness day
“The date of May 12th was chosen because it is Florence Nightingale’s birthday.
She became ill while helping injured soliders int he Crimean war and never really recovered. Her symptoms of pain and fatigue closely resembled what we today know as fibromyalgia and chronic fatigue syndrome. She was virtually bedridden for much of the rest of her life until her death in 1910”
exerpt from the May edition front cover of ‘The Fibromaylgia magazine! To see the full article on “The ravages of Nightingale”s disease” by Dr Kevin White go to
www.ukfibromyalgia.com to obtain a copy of the May 2014 edition.
New workshop for sufferers of fibromyalgia and chronic fatigue/ME
“Annette Boden Wellbeing” presents:
A morning of mindfulness, self-compassion, and deep relaxation for people with Fibromyalgia, chronic fatigue and ME
April 26 2014 from 10.00am until 12.30pm
At 250 Park Lane, Macclesfield
I am very pleased to introduce this unique and uplifting workshop for you to enjoy and experience the combined benefits of mindfulness, deep relaxation, meditation, and self-compassion exercises that will refresh, replenish and rejuvenate mind and body.
The cost of £30 payable in advance of the day reserves your place.
NB: Places are limited so early booking is recommended and a waiting list will be in place.
For further information and to book your place, please contact me via my contact page:
Telephone: 07753 957371
What Is Fibromyalgia?
Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.
The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.
Fibromyalgia is a common illness. In fact, it is more common than rheumatoid arthritis and can even be more painful. Prevalence of Fibromyalgia: A Survey in Five European Countries (seewww.fmauk.org/prevalencefor details) put the prevalence of FM at between 2.9 and 4.7%. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.
If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.
Besides pain and fatigue fibromyalgia symptoms often include:
- unrefreshing sleep – waking up tired and stiff
- headaches – ranging from ordinary types to migraine
- irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
- cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
- clumsiness and dizziness
- sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
Fibromyalgia is not new, but for most of the last century it was difficult to diagnose. Part of the problem has been that the condition could not be identified in the standard laboratory tests or x-rays. Moreover, many of its signs and symptoms are found in other conditions as well – especially in chronic fatigue syndrome (CFS).
Two Canadian doctors developed a way of diagnosing fibromyalgia in the 1970s and in 1990 an international committee published requirements for diagnosis that are now widely accepted. Once other medical conditions have been ruled out through tests and the patient’s history, diagnosis depends on two main symptoms:
- pain in all four quadrants of the body for at least three months together with
- pain in at least 11 out of 18 tender point sites when they are pressed. The “tender points”, or spots of extreme tenderness, are rarely noticed by the patient until they are pressed.
The information above is taken from The Fibromyalgia Association uk website.
I would recommend having a look at the Fibromyalgia Association Uk website for further and regularly updated information at fibromyalgia-associationuk.org
There are similarities and cross over symptoms with Fibromyalgia, ME, Chronic fatigue, and post viral fatigue. Some people have Fibromyalgia and Chronic fatigue.
On a personal note
As someone who has suffered from fibromyalgia for a number of years now, I have a deep personal understanding of the condition and it impact on daily life.
Amongst the range nutritional suppliments that help me, including Vitamin B,C, Magnesium, and zinc, I have found Aloe Vera and bee pollen to be most helpful for lifting my energy levels.
I drink ‘Organic no caf and herbl teas (not fruit teas) to reduce/replace caffeine.
I use Aspall’s organic cider vinegar and I have Manuka Honey almost every day.
I use ‘Pernaton green lipped muscle extract cream for localised pain.
I also use the vegepa pure fish oil capsules, I get them by mail order, and they are an excellent pure source of omega 3 and 6, and I have noticed pain reduction and have stuck to these for over a year now. You can find out more by visiting the research charity that speciaIises in research into chronic condition. For further information from their webisitewww.igennus.com
I have also learnt ( the hard way) to pace myself- to excercise (by walking) and to rest when my body tells me to. I have also worked out what works for me dietry wise. Recent research suggests that there may be a number of different strain/types of fibromyalgia which would explain why those who have fibromyalgia may not have all the same symptoms.
NB-IMPORTANT– I am not suggesting you follow my regime. I am anecdotaly sharing what works for me and will continue to share under the ‘blog’ page of this website and on my facebook page “Annette Boden wellbeing”.
Always check with your GP before undertaking any course of treatment.
Hypnotherapy and counselling support
The key significant help in my daily life has been Self -hypnosis, and this I recommend to anyone who has fibromyalgia and /or chronic fatigue. I see many people for these conditions and work with them through a combination of cognitive counselling and Hypnotherapy to create balance in their lives, to reassess goals and objectives, and to address the emotional impact so that people can give themselves permission to rest when they need to and not feel guilty. For further information or to book an appointment call me on 01663 750323 or email me from my ‘contact me’ page.
I also find mindfulness based meditation and excellent way to rebalance and to help settle the ‘brain fog’.
I also recommend Jan Sadler’s excellent book with accompanying CD “Pain relief without drugs” ISBN: 978-1-59477-151-4 and her helpful and informative website www.painsupport.co.uk
I would also recommend a look at the pioneering work of Dr John Eaton and his work on ‘reverse therapy’ especially developed to address the mind-body connection with chronic fatigue, ME, and Fibromyalgia. I was trained under Dr Eaton and have the upmost respect for is work and research. You may find something of value to help you on the revere therapy websitewww.reverse-therapy.com.
Exert from Dr Eaton’s homepage:
“Reverse Therapy was developed by John Eaton between 1996-2002. It is a simple approach which teaches people how to use Bodymind to recover from illness, regain mental health and stay well.
Although it has many imitators it is still a leading-edge solution for Chronic Fatigue Syndrome and other stress-related illnesses.
In the early days we used the approach to help people with Anxiety, Panic, Stress and Depression. Then we discovered that Reverse Therapy is also a powerful solution for Chronic Fatigue Syndrome, Fibromyalgia and many other non-specific illnesses. Since that time we have gone on to experiment with our treatment strategies and we are proud of the fact that Reverse Therapy is now a complete alternative to Psychotherapy.”
The FaMily magazine is also an excellent source of information and support and I highly recommend subscribing. For more information go towww.ukfibromyalgia.com
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