physical activity & exercise

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Flare ups.

Postby AlyxDenman on Wed Aug 14, 2013 3:40 pm

Hi,

I suffer with a moderate to severe form of M.E, if I exercise or do any physical activity one day, I have to rest the next day as it causes me to have a flare up. I went out with my fiancé and parents yesterday, I am in agony today, and completely exhausted, I have no energy, what can I do to improve my energy levels?

Thanks.

Alyx.
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Re: Flare ups.

Postby Jessica Bavinton on Wed Aug 14, 2013 4:08 pm

Dear Alyx

It’s hard to answer your question too specifically, as a full assessment would help to work out what exactly is contributing to your fatigue (everyone’s different), and hence help to work out what can be done to improve your energy levels.

However, you are describing what’s ‘known in the trade’ as a boom-bust cycle. This is a setback caused by ‘overactivity’. This means that what you did yesterday was too much for your current physical capacity, which is why there has been an impact today.

The way to improve symptoms, and energy levels, is to understand what you can do regularly and comfortably. This does mean ‘saying no’ to things that are currently significantly beyond your comfort level, but also increasing your activity when you don’t feel as good. Then, once you feel you have a steadier level, the idea is to carefully and gradually build up your physical activity and strength so that, in time, you can go out with your finance without having the same impact.

This is all easier said than done, and most people find they benefit from some professional guidance to get these levels right, and then to work out when and how to increase.

If you are not already linked into an NHS service, this could be a place to start:

I'd suggest looking up BACME:
http://www.bacme.info/localservices/

Find your nearest NHS service, and then go to your GP and ask to be referred to it.

This book is also a good place to start:
Coping with Chronic Fatigue by Trudie Chalder

I hope this gives you a glimpse of a few things that will make a difference to you.
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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Re: Flare ups.

Postby Sarahlaw on Fri Aug 16, 2013 10:24 am

Dr Bavington, can you explain what you mean by the following sentence? "This does mean ‘saying no’ to things that are currently significantly beyond your comfort level, but also increasing your activity when you don’t feel as good."

You seem to be saying that we should not exert ourselves if the activity puts us beyond our comfort level but also that we should increase activity levels when we feel bad.
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Re: Flare ups.

Postby metoolong on Fri Aug 16, 2013 10:45 am

I am sorry that I must take issue with your advice to increase activity when not feeling as good with no caveat!
For those suffering simply from fatigue I am sure this advice is sound, but not for those who suffer from the classic ME symptom of post exertional malaise, ie a flare up of symptoms and feeling ill, not simply tired after exertion, often delayed by up to 72 hours later. For these people, to increase activity when you are not feeling as good is counterproductive and indeed dangerous.
It is important to listen to your body and do less when in relapse to give the batteries time to re- charge, and only increase activity as your body tells you but even then take care to keep within your energy bracket to avoid boom and bust. If you drain energy still further it can become a downward spiral.
People who boom and bust are motivated already and want to do more, so do not need encouragement to do more, rather need to curb this desire to remain on an even keel.
It is worrying when advice is given on a 'one size fits all' basis when there are many subgroups of 'CFS', and it is important to point out that graded exercise has never been tested on patients with severe ME - the questioner says that she has moderate to severe ME.
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Re: Flare ups.

Postby Jessica Bavinton on Fri Aug 16, 2013 11:58 am

Sarahlaw wrote:Dr Bavington, can you explain what you mean by the following sentence? "This does mean ‘saying no’ to things that are currently significantly beyond your comfort level, but also increasing your activity when you don’t feel as good."

You seem to be saying that we should not exert ourselves if the activity puts us beyond our comfort level but also that we should increase activity levels when we feel bad.


There's a balance to be had, here.

There's a difference between 'manageable / average symptoms' and 'unmanageable / high' ones. The process involved in managing activity and symptom levels involves trying to keep a steady, regular routine of activities that does not exacerbate symptoms into the 'unmanageable/high' zone: it is not realistic to be symptom free, but just to have symptoms more steady by controlling activities that affect them.

To maintain this 'steady level' two things are needed:
1) To hold back when tempted to do more than the current capacity (and hence, avoid symptoms by 'doing too much')
2) On a more difficult day, to try to increase the level (as able, if manageable)

Some days this will not be possible, and they will need a different approach which may involve resting, relaxing etc - but the principle it to try to maintain what you can, when you can and to keep (where possible) to a consistent level.

Knowing what to do and when is not at all straightforward, hence why professional support and guidance from a therapist who understands CFS/ME is important to help come to decisions at a difficult time.

Here's a bit more clarity and what the NICE Guidelines has to say o the matter: (p249+)

Management of setbacks/relapses [1.7]
Preparing for a setback/relapse [1.7.1]
People with CFS/ME should be advised that setbacks/relapses are to be expected as part of CFS/ME. [1.7.1.1]
Healthcare professionals and people with CFS/ME should develop a plan for managing setbacks/relapses, so that skills, strategies, resources and support are readily available and accessible when needed. This plan may be shared with the person’s carers, if they agree. [1.7.1.2]

During a setback/relapse [1.7.2]
Setbacks/relapses may be triggered by factors such as unexpected/unplanned activities, poor sleep, infection or stress. Healthcare professionals, in discussion with the person with CFS/ME, should try to identify the cause(s) of a setback/relapse, but it should be recognised that this may not always be possible. [1.7.2.1]

When managing a setback/relapse, the management plan should be reviewed. Healthcare professionals should discuss and agree an appropriate course of action with the person with CFS/ME, taking into account:
• the person’s experience
• possible causes of the setback/relapse, if known
• the nature of the symptoms
• the severity and duration of the setback/relapse
• the current management plan. [1.7.2.2]
When managing setbacks, healthcare professionals should put strategies into place that:
• Include relaxation and breathing techniques.
• Maintain activity and exercise levels if possible, by alternating
activities with breaks and pacing activities, as appropriate.
• Involve talking to families and carers, if appropriate.
• Recognise distressing thoughts about setbacks/relapses such as
‘this means I’ll never get better’, but encourage optimism.
• Involve reconsidering and revising the levels and types of symptom
control. [1.7.2.3]

In some setbacks/relapses, it may be necessary to reduce, or even stop, some activities and increase the frequency and/or duration of rest periods to stabilise symptoms and re-establish a baseline activity level. This should be discussed and agreed with the person with CFS/ME. [1.7.2.4]

People with CFS/ME should be advised to minimise daytime sleep periods. However, healthcare professionals should recognise that this is not always possible, depending on the severity of a person’s symptoms and the setback. [1.7.2.5]

After a setback/relapse [1.7.3]
After a setback/relapse, healthcare professionals should review the person’s activity levels to re-establish a baseline and review the management plan. A gradual return, when possible, to previous exercise and functional routines should be encouraged. Activity should be increased gradually. [1.7.3.1]
Healthcare professionals should advise on:
• Slowly decreasing the frequency and duration of rest periods.
• Continuing the use of relaxation techniques, even when the person
with CFS/ME is beginning to feel better. [1.7.3.2]

After a setback, healthcare professionals and people with CFS/ME should review the experience to determine, if possible, whether triggers can be managed in the future, and put strategies in place to do this. [1.7.3.3]
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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Re: Flare ups.

Postby Sarahlaw on Fri Aug 16, 2013 5:18 pm

An ME expert said that the only time the brain has to heal itself is during sleep, that I should listen to my body and sleep whenever I felt the need. It is also what the Tymes Trust suggest - they campaigned about it last year during ME awareness week - among many others. Preventing someone with ME from sleeping at any time of day should be considered abusive. Many people with ME have severe insomnia. I sleep just 2 hours in 24 and sleep meds have made no difference.

I'm not sure what the difference is between setback and relapse. However, I find this paragraph disturbing, once again, and contradictory:

"To maintain this 'steady level' two things are needed:
1) To hold back when tempted to do more than the current capacity (and hence, avoid symptoms by 'doing too much')
2) On a more difficult day, to try to increase the level (as able, if manageable)"

So, to maintain a steady level one has to increase the level... and one should do so on a more difficult day... I find it hard to express how inappropriate such advice is. I've seen some of the other posts regarding exercise and you aren't addressing the serious concerns that are being expressed and are supported by much evidence. Brynmor John, MP, died leaving the House of Commons gym after being advised to exercise. Thousands more have been hugely setback in their path with ME because they were advised to exercise. It is well known that exercise in the early stages of the illness leads to a worse prognosis.

Dr Bavinton, could you cast your eyes over the "101 good reasons" why the various ME experts around the world do not recommend graded exercise therapy in ME patients. I think it would enlighten you. In this link (http://carersfight.blogspot.co.uk/2010/ ... asons.html), number 4 states in regard to GET in the NICE guidelines:

"The ME Association is disappointed that the High Court Judicial Review of the NICE Guideline on ME/CFS found in favour of NICE."

And from number 61, an Action for ME survey of 2,000 folk found: "92% were not helped by GET."

My GP wouldn't allow me to do GET, neither would my neurologist - I wouldn't trust the opinion any medically qualified person who did recommend it for me or anyone else with ME. I'm taking the time to write this to try to prevent further suffering - the advice you give is critical and you should not think that in referencing the NICE guidelines that you are exempt from responsibility. What are the odds that everyone here is condemning the use of GET for ME based on anecdotal evidence and a misunderstanding of the nature of the "treatment" or the illness? Around zero, I would suggest.

Can you address some of the concerns that people here have expressed re the dangers of GET? I know of no ME sufferer who has benefited from GET, only those who have suffered and relapsed. The NICE guidelines weren't welcomed by sufferers or the ME Association. Maybe Dr Shepherd could confirm that the above quote is accurate. The PACE trial has been thoroughly discredited (the links have been provided in another thread). Please take time out to consider evidence you may not have seen before. Many thousands of lives are at stake.
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