syndrome or ME. Part of the process of recovery is to have “blips”, which are not to be feared or blown out of proportion. Blips DO happen on the road to recovery, and over time they happen less frequently, are less deep and last for a shorter period of time – but they DO happen. Graph of the Recovery Process from CFS/ME One other important point to emphasize about the STAGES of recovery is that stages are NOT a linear process, i.e. a crash is not necessarily followed in order by misery, adaption and reintegration. Patients can for example, move into the reintegration phase after any other stage, or drop back into the crash stage after any other stage. Understanding that there are different TYPES of fatigue – understanding which part of the body is stressed and whether pacing is relevant treatment Type of Fatigue Symptoms Biochemical Treatment Psychology and Pacing Physical This type of fatigue specifically relates to post-exertional fatigue – i.e muscle tiredness and weakness after physical activity (and can include a return of all ME symptoms). This relates most directly to a poor mitochondrial function. A nutritional practitioner can help treat mitochondrial function. It is critical to understand about pacing at this stage – see the section below on Bouncing the Boundaries Emotional Feeling of emptiness inside. Disproportionate emotional reactions to situations. General malaise and exhaustion which just won’t shift. Pain and aching in the body. This often relates to an imbalance in the hypothalamic-pituitary-adrenal (HPA) axis, neurotransmitter and nutritional deficiencies, which can be treated by a nutritional practitioner. Treatment involves tuning into emotional issues to help clear these, which can be helped by working with a psychology practitioner. Pacing activities alone and not dealing with the emotional issues will not make a difference to this specific type of fatigue. Wired but Tired Feel agitated and irritable. Dizziness and brainfog. General ‘exhaustion’ feeling – feeling ‘ill’ all over. Chronic anxiety and excess mental activity leads to nervous system hypersensitivity and HPA axis imbalance, poor absorption and nutritional deficiencies. This can result in other systems crashing including methylation, detoxification, and mitochondrial function, treatable by a nutrition practitioner. Treatment here is learning to identify the voice of the “achiever” or the voice of “anxiety” etc. as well as using psychological tools such as the “Stop Process” to recognise these voices for what they are. You therefore learn what appropriate activity levels are for you, i.e. levels that do not over or under do it. One to one sessions with a psychology practitioner or the 90-day programme are applicable. Pacing activity alone and not learning to identify and deal with the “voice” dictating your activities may not make a difference to this type of fatigue. Neurotoxic Patients decribe feeling “dreadfully ill”, “toxic” often have many head symptoms including significant problems with memory and concentration, as well as anxiety, which is physical in origin rather than psychological. Often the key issue here is toxins from heavy metals and/or chemicals overloaded in the system as a result of a methylation crash or a genetic polymorphism. This leads to problems with the fatty cell membranes of all cells in the system, which become disordered. Primary treatment here is on the biochemical/physical side. Psychology treatment is primarily as a helpful support. Pacing tends to be automatically imposed due to the feelings of illness. Flu Symptoms Patients often report feeling “fluey” but these symptoms never fully manifest. Patient has an immune system imbalance, but this is often a result of other types of fatigue named above. Treatable by a nutrition practitioner. Flu-like fatigue is often caused by other types of fatigue and the primary aim here is to discover what other types of fatigue imbalances are present. Pacing will usually help this type of fatigue, as the underlying cause is often neurotoxic or post-exertional fatigue. Environmental Doing one thing for too long, poor posture and needing to move, blood sugar imbalance and needing to eat, not breathing properly. Usually changing what you are doing in your immediate body or environment is the key to resolving this type of fatigue. Pacing makes no difference to this type of fatigue. Managing PHYSICAL ENERGY levels – “Bouncing the Boundaries” Managing your activity levels is requires a fine balance between doing enough to keep your body from becoming de-conditioned and avoiding chronically “over-doing” it, constantly putting your body into post-exertional fatigue. The best guidance we can give is noticing when you have undertaken some physical activity – if you have immediate or delayed fatigue (which is often accompanied by a return of many chronic fatigue related symptoms, not just muscle fatigue) then you have just discovered your current physical limits. For a while you might want to do a little bit less, then after more time, try increasing activity again. This is what Alex covered on Secrets to Recovery (and in various video blogs) when he discussed the concept of “bouncing the boundaries.” The Optimum Health Clinic model for managing your physical activity levels is one of gently “bouncing the boundaries” to gain feedback as to what stage of recovery you are at and to establish when it is time to increase, stabilize or decrease your activity levels. This means that each new activity that you wish to introduce should be seen as an experiment. When you feel you have sufficient energy to attempt new activities, build them gradually into your daily routine one by one. It is inevitable that some activities will cause you to overdo things at some point. However if this happens, then you simply know that you need to scale things back again until that activity becomes comfortable, and is unaccompanied by signs of post-exertional fatigue. Remember that you are in control of your pacing schedule and you can allow yourself to experiment with new activities. If you start to feel anxious about overdoing things and stepping out of your comfort zone then this is the time to tap into your psychology tools such as using the STOP process, to allow you to move forward with things that may be well within your physical capabilities. It’s okay to check out where your limits are every now and then. As you recover, your physical limits are changing all the time – so be prepared to get it wrong and have a “blip” every so often. Do not worry about occasional blips – it’s just a blip and you will get over it – remember the graph of gradual improvement with blips along the way is the natural road to recovery. What we are trying to AVOID is CHRONICALLY OVER or UNDER-doing activity levels After treating thousands of chronic fatigue and ME patients for six years intensely at the clinic, we have discovered that pacing, or rather lack of pacing can be one of most significant reasons many patients have a slow or delayed recovery. The reason is that pacing doesn’t just require a logical or rational understanding about limiting physical activities. A person’s physical behaviour is intrinsically involved and influenced by their internal belief systems, who they are, who they interact with in their lives, as well as their socio-economic situation. This is a far cry from the limited or reductionist understanding that the orthodox medical profession connects to the illness. The “official” figures on recovery from chronic fatigue syndrome and ME range from 10-30%. This is extremely misleading it because gives the impression that there is some biochemical problem that is unfixable, rather than appreciating that in fact patients CAN recover. Recovery however, is dependant on a holistic understanding that a person’s physical body is a dynamic, adaptive system that is constantly interacting with the self, others and the environment. Understanding this means that patients address the “cause” of their illness at multiple levels or locations – their psychology, relationships and socio-economic conditions. We want to emphasize here that whilst pacing is something a patient does need to take responsibility for in their lives, this is not something to use to “blame” the patient for not recovering. There is no assignment of “fault” here – as ever, learning to pace is simply part of the ongoing journey of greater understanding, self-discovery and personal growth, which many chronic fatigue syndrome and ME patients go through as part of their recovery. Patients deserve compassion, patience and support from practitioners, friends, relatives and most importantly from themselves, as they perfect the art of pacing. Here is some more guidance to help you: Signs you are chronically over-doing it: • Crashing once every week, or every 2-4 weeks •Feeling that you have got your energy back – then going straight into using all it all up by increasing activity levels a lot, and later crashing again •When you get more energy, being unable to hold back. Stick to a gradual increase in activity, not allowing the extra energy to be used by the body for internal healing (rather it is used for external activities) Most common reasons why you find it difficult to stop over-doing it: Internal psycho-emotional reasons •Thinking you simply “should” be doing more. This could be called “shoulding on yourself” – it’s a judgemental message from the super-ego (mind) – not the truth from your body or heart – this is often a trait of the “perfectionist” personality type •Stopping activity will mean you may have to face underlying issues of low self-worth – all that activity you were undertaking made you feel okay about yourself – you were a “high achiever” type and now this is identity is being stripped away •Feeling ashamed of being “incapable” or “limited” by the illness •Feeling the need to socialise because of feeling so alone and isolated by the illness, even though the activity with people is wiping you out •Worried about admitting “defeat” – the illness will overcome you if you stop activity •Control issues – if you let go of control you’ll never get better or it will take over you forever •Denial about being ill – you haven’t really come to terms with the fact you have a chronic illness and that you need to limit your activity •You have trouble being vulnerable and asking for the help you now really need •You hate the feeling of being bored, trapped, deprived or limited •Being disconnected or numbed out from your body and your heart/true feelings, which want rest because they live in their head Psycho-emotional reasons and relationships with others • Making the time and space for yourself requires a level of assertiveness with friends, family and work colleagues or others, which you find difficult due to your people-pleasing nature, and are scared of being assertive •Stopping activity that involves looking after others, being responsible for looking after friends and family – this was where you were getting your self-worth and identity from – you also love and care about people and you don’t want to face the fact that you can’t look after other people any more •Friends and family may have expectations of you behaving in the “old you” way – e.g. as the chronic achiever, these expectations may need addressing and facing Socio-economic reasons • Difficulty because you have life obligations to look after children, or do a job to make money, or are a carer of relatives (and fund treatment amongst other things) Signs you are chronically not doing enough: •No gradual incremental improvement is occurring – recovery is static •No blips are experienced •Lack of real commitment to see how you could do more, or following through on professional advice (lack of compliance) •Using supplements or other therapies as a way to rationalize to yourself you are doing all that you can to get better, but really this is “going through the motions” and allows you to avoid facing real emotional issues underneath Most common reasons you avoid doing more than you can: •You simply didn’t believe it was possible to do more – you’ve been ill for so long you “think like a sick person”, even though your body is actually stronger than you realise •You’re afraid of re-experiencing traumatic incidents from the past where your body was weaker and genuinely “let you down” •Your illness may allow you to avoid certain life circumstances that are painful or scary to face – getting better means you must face them •You don’t know what you want to do in life – you’re not sure yet of your “raison d’etre” •Being numbed out and disconnected from your body and heart/true feelings, which want to do more, but you are living in their head and not listening to these messages Reasons not to “push through” your energy limits and chronically over-do things: This section is primarily for all you achiever and perfectionist types out there who trip up by constantly pushing through and classically burning out. This is less important for the anxiety types. There is a very good reason for not chronically pushing beyond the limits of your physical capabilities in chronic fatigue syndrome – because you may actually cause further damage to your body tissues and prolong your recovery time. Post-exertional fatigue symptoms in ME and chronic fatigue snydrome are likely to mainly be linked to poor production of energy within the mitochondria, the energy factories inside the body’s cells. If your energy production in the mitochondria is impaired for example by toxicity, chronic viral infections or nutrient deficiencies, then you only have a small amount of energy available for daily activities – if you push yourself you are technically running on empty. Pushing yourself physically beyond the limits of your mitochondria results directly in oxidative damage within the mitochondrial and body’s cells. Imagine driving a car around without sufficient oil or coolant – eventually you would cause lots of damage to engine and need substantial repairs, which could take it off the road for weeks! See the Mitchondrial Malfunction handout on the patient support site for more information. So you can DELAY, PERPETUATE and PROLONG recovery from your illness if you are chronically creating physiological damage in your cells, by chronically wiping out mitochondrial energy production via excess activity levels. Reasons not to become chronically under-active: Just like doing too much activity can be problematic for your mitochondrial function – doing too little also has physiological consequences. Your body’s TOTAL number of mitochondria (energy producing engines) is dependant upon and will adapt to your activity levels. It is well known in sports physiology that people aiming to gain more physical fitness will create a little bit more demand on their body via physical activity, gradually, because the body will respond to this extra demand by INCREASING the total number of mitochondria in the muscles of the body. People who are physically unfit will have fewer mitochondria overall in their bodies, leading to being more tired and overcome by or tired out by physical activity. Lack of activity in any human generally leads to: • Fewer energy-producing mitochondria in the body, leading to fatigue and breathlessness • Reduced muscle size and strength • Poor lymph drainage leading to internal toxicity • Poor sleep – nervous stress and energy is not used up via daily physical activity • De-conditioning of the heart • Raised cholesterol levels So even if you are house-bound or bed-bound with your illness DO undertake some gentle form of activity that suits your levels – even if it is just moving your arms and legs daily, to keep some conditioning in the body.
Posted on: Fri, 31 Jan 2014 16:22:40 +0000
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