In the same way that many factors are associated with the onset of CFS/ME, there are likely to be many factors keeping the problem going and these factors are not always the same that caused it.
In line with NHS thinking, I think people tend to veer into two camps in which after getting ill they then:
1. Resume normal activities too soon after initially getting ill and continue doing too much. There is a struggle to give up ‘who one once was’ both due to the loss of identity that can come from this and also from a tendency to put others first. This way there is no time to fully recover, your ‘tanks/battery’ never get a chance to refill and while you may find that some days you think you are making significant progress, if this is surrounded by a ‘boom and bust’ cycle, then it’s been proven that over time you will actually get iller. Accepting that full rest is essential to get better long term and will be the quickest way to recovery is vital. If you fully rest temporarily, you are more likely to make a full recovery in the quickest way, than if you deny this and keep on going, that way you could live in a semi-ill, semi-well state for many years – the aim is full recovery.
2. Resting too Much: De-conditioning and Loss of Fitness – we need to rest with an acute illness, however some people mistake this for prolonged bed rest. Often you may not be able to get out of bed or really move, but this quickly leads to loss of fitness which in the long run can cause more problems and symptoms.
Mitochondria are the power houses within our cells, which serve to supply energy to the body. When there is a loss of muscle function from too much rest, the number of mitochondria in muscle cells reduces. Therefore, muscles become more tired and produce more lactic acid upon exertion leading to more pain.
Resting also leads to changes in the cardiovascular system, resulting in a drop in blood pressure. Therefore, upon standing one will feel more dizzy and as the heart is a muscle, if it is not used regularly, it becomes less effective and has to pump faster at rest and exercise. Watching ‘Unrest’ on Netflix can give you an insight into how difficult it can be to come back from deconditioning with CFS/ME – just sitting up in bed caused a seizure and exhaustion for one of the interviewees.
There is a reduced tolerance to exercise as a result of the changes above. This is particularly noticeable for those who were very fit before becoming ill – they decondition faster when resting than those who were less active.
Where my view slightly differs here, is that with CFS/ME your body becomes a highly sensitive alert system. It is desperately protecting you from getting iller and so if the onset of your CFS/ME was largely linked to an infection and/or over-exercising, you may find that your body is particularly attuned to warn you (by sending increased symptoms) with minimal exertion of physical exercise. On the other hand, if the onset of ME/CFS was more predominantly linked to psychological and social factors, you may find that discussing topics that were contributing stressors to the onset of your CFS/ME may lead to increased symptoms/stress and a very reduced tolerance to manage this. This is where it gets complicated to find the balance, of pushing a small amount so that your body doesn’t totally decondition from immobilisation or being immersed in life/people/some stressors, so that after time out from those things, you do not discover that you in fact have less of a tolerance to such things. I have seen how people who completely withdraw from life (movement, work, seeing people) may feel fairly good in that setting, however to reintegrate into life becomes a very hard process. Just being in busy places or around noise and minor stimulation can be way too much. However, not taking enough rest and reducing stressors enough, also delays a persons recovery.
It is vital to first stabilise – work out what you can do on a bad day, which may simply be getting up. Then for some time until your symptoms reduce only do this, even if one day you feel you could do a lot more – this way your ‘tanks/battery’ have a chance to build and get out of negative numbers. You want to build a reserve of energy, not just be running on 1-2% the whole time, one step away from a crash. Once your symptoms have been absent or reduced for a week or so doing that, then you can slowly add tiny amounts. ie. do stretches for two minutes a day, reply to one text a day, see someone at your own home for 15 mins. The important thing is not to increase what you do too fast, only once you have had reduced symptoms in your current plan for some time, but it’s important to keep aspiring for more. If you are someone that is fairly obsessive and driven, perhaps not writing your progress down will be better so that you don’t ‘push on’ no matter how you actually feel. You will also learn which symptoms are your warning symptoms, but don’t necessarily mean longer term damage, just are indicators you are pushing more, and those that are more serious and need immediate bed rest from. The body is very clever and is doing this to protect you, so constantly learn to listen to it and understand the signals.
Be very wary of adrenaline – often people with CFS/ME having been living off adrenaline for a very long time. Adrenaline is meant to only occur in emergencies to aid us with short-term energy demands, such as getting ourselves out of danger. It means that you can push on despite being depleted, and the normal release of adrenaline is overruled. You may be able to easily recognise this in times when you have been able to manage a stressful situation/event with very little sleep and being incredibly busy, with other people not understanding how you can do it all. Or how you can stay up beyond anyone else, or go for endless runs in times of stress, going your fastest, never getting tired and knowing that you shouldn’t have the energy for it.
So people with CFS/ME have too much adrenaline a lot of the time and so struggle to relax, have buzzing thoughts, perhaps over exercise to regulate overload of adrenaline, use substances or other ways to regulate adrenaline, struggle to sleep and out of the blue both at night and day, their body will go into the ‘red alert’ (increased breathing rate, pounding heart, dizziness and heightened awareness). At the end of such spells, the person may feel more drained and exhausted. This can happen on a small scale, across minutes or hours. Or someone can be living off adrenaline for many years and then when they start to come off it there is a big crash. Acupuncture and other techniques that reduce reliance on adrenaline and activate the parasympathetic nervous system need to be careful of this as if they reduce it too quickly without building up the foundation energy, it can be like popping a balloon and initiate a major crash. You may notice that you get ill or drained on holidays or when you have time off, this is probably an indicator that you live off adrenaline a lot of the time, that is if you are even able to relax enough on holidays for your adrenaline to go into the ‘green zone’.
I think that being aware of how your adrenaline system works is vital for your recovery of CFS/ME, it may be that this isn’t very relevant for you, afterall the presentation of CFS/ME is so wide ranging and I think this is more linked to the psychological side to it, but if you find that you can feel great around people, at a social event for example, but that your energy feels unnatural comparable to how you have generally been feeling, then it might be a cautionary sign that you are releasing a lot of adrenaline. If such times are followed by more severe symptoms – headaches, vomiting, sickness – then it’s worth seeing how your adrenaline response is over-firing and one way to manage this is to take more breaks when ‘having fun/being with people’ so that you can bring your adrenaline down and reduce the post-exertion symptoms and at the time have more time to process as you go along, even if that does sound a bit depressing. Start to notice what activates your adrenaline response more or less and rather than totally avoiding it, because of course adrenaline can come from enjoyable things, start to manage and pace for it more effectively.
Finally, it has been found over and over again that being ‘lazy’ is a protective factor to ME/CFS. It can be quite entertaining to think of someone you perceive to be lazy and see how their day may be similar / different to yours. People with CFS/ME are conscientious, passionate, hardworking people with high standards of perfectionism. They can be busy with many commitments and tend to put others’ before themselves, they are the ‘caring type’. Illness can therefore be very difficult as such standards cannot be met, this can lead to pressurising oneself to ‘push on’ or pressure can often come from others who are used to you playing a particular role. But keeping going when unwell and ‘pushing through’ symptoms is not the answer and the only way to start getting better is breaking the ‘boom and bust’ cycle. The most important thing to remember though, is that people can and do get better. It just takes time.
Some books on CFS/ME:
Overcoming Chronic Fatigue: A self-help guide using Cognitive Behavioural Techniques(2009). Mary Burgess and Trudie Chalder.
Living well with pain and illness (2010). Vidyamala Burch.
Chronic Fatigue Syndrome: All the information you need, straight from the experts (2008). Frankie Campling and Michael Sharpe.
There is also ‘Walking Meditations’ and ‘Buddhify’ for guided meditations which can be useful.