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FAQ's about CFS/ME

Below are some of the questions we were asked and have reported them as accurately as we feel.

How much should I do?

I'm normally quite active physically; I'll do a dance class or two a week, and go for a decent walk most weekends. About seven weeks ago, I had flu for a week and then had flu-like symptoms for about four weeks - feeling really tired, sweating a lot, and just unable to do much or function normally. I felt like I was shivering, without being cold or having a temperature. It was almost painful.

Work was extremely difficult - I found it very hard to concentrate. Then about two weeks ago I began to feel better, and felt brilliant and relieved that I was well again. Work was better, it was twice as easy to do, and I decided to do a contemporary dance class last Wednesday (so that was a week and a half feeling well).
That set me back again, though. On Friday I felt just as bad as I had a month ago, and spent the weekend getting over it.

I really love dancing and am deeply frustrated at not being able to. I just wonder whether that kind of intense muscular activity is not the kind of exercise I should be doing. I'm asking because I was interested to see that you said that people with post-viral illnesses do often feel worse after exercise, and that you should push yourself further. But my doctor said to take it really easy. And so did my Mum, and there's no arguing with her. It was only seven or so weeks ago that I first got ill - should I just be taking it easy.

Answer:
The short answer is I think you should be taking it easier. If I've understood you properly it sounds like you were quite knocked out for a bit by the flu, began to feel better, then you did something fairly strenuous and as a result felt much worse again. Now you don't know what to do - you've got the doctor and your mum saying "take it easy" and you've got us lot saying "keep going".

What to do? The middle way as always.
There are two dangers in the recovery period - doing too much and doing too little. I would predict that another dance class at the moment would probably knock you back again, but similarly I would predict that if you avoid physical activity all together and just decide to rest, your recovery will take longer.

Of course without knowing your full medical history etc, I can't really give specific advice but I think the general key is little and often. Physically you're going to be weaker than you were a few weeks ago, when you were much more active. You need to build back up slowly. In an ideal world you would do a ten minute dance class four times a week to begin with. Once that has felt easier you would then do a 15 minute one etc., etc. That's probably not feasible, but doing an equivalent amount (for you) would, I think, help.

When we say that people should "just keep going" this is only within the context of having established a routine that they feel they can cope with, i.e. a routine within their current physical capabilities. Some days this will feel more difficult than others; conversely other days it will feel too easy.

The temptation then is to go and do far too much. This then sets them back in the following days, when they may find themselves doing much, much less. Doing much less makes it more difficult to then resume activity....and so on. It's to avoid this yo-yoing that we advise people to "keep going" with a routine that feels largely manageable.

Clearly for you a dance class is a bit much at the moment, but find a level of activity that you do feel you could manage, and gradually build up on that. Hope it goes well.

How can I improve my concentration?
Eighteen months ago I was eventually given a diagnosis of fibromyalgia/cfs after several years of being told that my symptoms were either due to a virus or were linked to menopausal changes. I have some of the tender spots which might indicate fibromyalgia but the rest of the picture seems more like cfs.

 

My biggest problem is trying to play the piano. My coordination which is relatively okay for 'normal' activities is inadequate, similarly memory and concentration. Is there any data or advice for practising musicians who don't wish to give up playing but find their level of capability so impaired that the familiar and often stated feelings of uselessness and hopelessness are never far away? Is there a time span for recovery or a way to gauge progress? I am actually trying to finish a degree course with performance exams coming up in the New Year?

 

Is it worthwhile trying Enada to boost energy levels, does it have any affect on motor movements or coordination and would it have to be taken permanently? Finally are there any specialists, (preferably with some understanding of musician's special needs) in the Edinburgh area?

Answer:
I don't know about specific research, but both myself and my colleagues have all had musicians as clients, and there are some general points about concentration you may find helpful.
  • Firstly the kind of mind/body hand eye co-ordination, the concentration etc. of tasks like playing the piano are often particularly exhausting and demanding. Dont be alarmed by this. Rather like we would suggest with building up walking or whatever, start of doing little and often...then build up as your concentration comes back.
  • Have a look at how you are doing it. I get the impression that you are frustrated by the fact that you can't play like you used to, which is understandable. However this can be a bit of a trap. One can adopt the attitude that if I can't play like i did before, there is no point in playing at all or, I'll never be able to play well again. Like you say, this can make one feel quite hopeless and depressed.
    My advice would be to drop your standards in the sort term, to get them back in the long term. Play deliberately simple and easy things, play for just the fun of it. That way you'll play more often and in better spirits. Don't expect yourself to be good for while yet. You will get better again, and if you can remove your current frustration, you'll probably get there quicker.
More generally we find that concentration catches up with fitness. The more people are able to do physically, in a gradual and paced fashion of course, the more they tend to be able to do mentally.
Should I take anti-depressants?

I have been advised to take 20 mgs of Prozac and gradually decrease Amitriptyline which I have now stopped but I am not sleeping very well can you advise.

Answer:
Obviously I can't give specific advice about your medication, however low does tri-cyclic, such as Amitriptyline has been found to be useful in CFS for regulating sleep and reducing pain. It could be that you are experiencing a temporary sleep disturbance due to withdrawal from it.

If your sleep is still disturbed in about a month, try some of the tips on the sleep section (in fact try them now!). But, if after a month sleep is no better go back to your GP and ask for a review.
Again I cannot comment on your particular case, but there is no particularly strong evidence that Prozac is useful in CFS unless one is also depressed, which is not uncommon.

Chronic fatigue in children

I've just been reading the self help guide and I can't believe some of what I have read. I have a son just been diagnosed with CFS. He was nine last week. His legs go all wobbly if he just goes for a short walk. We have night sweats every night.

But he is really fighting this CFS and I think most children naturally would. How do you explain CFS in children. There are a lot of children out there with this and children don't naturally lie or put things on or get down or depressed. I really think the whole of the medical profession are letting these children down, the only thing we have been offered so far is anti-depressants which I have refused and some physio which we may have to wait 3 months for.

Answer:
Chronic fatigue in children is particularly distressing. Children often go for a long time without a proper diagnosis, or they can be dismissed as just trying to dodge school, or "only" being anxious. At our unit we are currently running a service for children and adolescents with Chronic Fatigue Syndrome. Soon we will be publishing a pilot study of our approach, which shows that the general approach outlined in these pages does work in children as well.

As to how we explain fatigue in children, that's a difficult one. As with the adults we see, there is never an identical case history, but there are some recurring factors. Let it be noted that the following observations are anecdotal evidence, not hard fact.
As with adults, we often see a history of stressful life events in the period leading up to the onset of fatigue. These can be moving house, starting a new school, the period leading up to exams, parental illness and so on. In addition to this we also often see that the children have been pushing themselves quite hard, or just doing rather a lot.

Typically we will see children who are doing a lot of extra-curricular activity and who are often very good at least one sport. They may also be doing very well academically. This very active time may be going along fine for a while but, as with adults, there comes a virus which is often the straw that breaks the camels back.

This then leads to a prolonged period of inactivity which, particularly in someone previously active, leads to fairly rapid deconditioning, which in turn means that renewed attempts at activity lead to symptoms at even lower levels of activity. Very quickly one can become trapped in a vicious spiral of fatigue and reduced activity.

OK, so that's not a complete explanation. Every individual case is going to be different and yours may well have none of these factors. At our unit we always make sure that all reasonable investigations have been carried out to exclude any other possible cause of symptoms, only then would we begin treatment.

The good news is, the spontaneous recovery rate in children is very high. By far the majority will be completely recovered within two years. However, two years is a long time to wait particularly if you don't know what's happening to your child. Getting a clear diagnosis is the first step of any treatment. Adopting a gradual rehabilitation approach with someone who knows what their doing - and a physiotherapist could be ideal for this - is the next.

I've put on weight

My specific question is that I seem to be caught in a vicious circle with body fat. I'm not fit enough to do vigorous exercise (my muscles ache from the moment I wake up, to varying degrees depending on how active I am and/or how aware of my aches I am). I'm now some 3 stones overweight (16st at 5'10") and mildly asthmatic, so now I need to lose weight but can't burn off the calories! I don't eat that much - partly due to financial pressures but partly to offset the weight problem, but I suppose I'm then in danger of not putting ENOUGH energy into me.

If I could get a prescription for swimming I'd love it, but that's just wishful-thinking. I'd also enjoy going to a gym, but both these activities are costly for someone on a low income like me. One of the few things I can think of that might help is EMS (Electro-Muscular Stimulation) pads.
Any suggestions you might have would be very gratefully received.

Answer:

It's a common problem. Many people with CFS put on weight - it makes sense. If you're doing less, but eating about the same (or sometimes even more) your going to be burning less calories. Three points to make on this one.

Diets, on the whole, don't work. People tend to stick to them for a bit, lose some weight, drift off the diet, and then put it back on. Any food regime based on deprivation is probably going to fail. Don't eat less - eat well. More fresh fruit and veg, less red meat and fat, rice bread and potatoes for carbohydrates. Snack on fruit in between meals, and eat regularly throughout the day to keep blood sugar levels from yo-yoing (this can cause fatigue). This has been standard nutritional advice for some time now, and is likely to remain so, however many fads come and go.

Point two is about exercise. Eating well and moderate exercise are the two proven ways of losing weight. Recent research shows that one of the most effective exercises - more effective than going to the gym a two or three times a week - is, wait for it, walking. Yep, a daily walk is probably the most useful thing you can do for yourself. Start of at a moderate pace and pick an amount of time you think you could stick to on most days (be that 5 minutes or 30). Do that for a couple of weeks. Once you're used to it, build it up gradually. Increase the pace slightly OR increase the length. Again give yourself a couple of weeks to adjust each time. It may be slow, but it will help. Keep a record of how much you could do at the start to remind yourself of how much you've improved later on.

Third point. SOME doctors have the ability to prescribe exercise courses, if they think it will help in a rehabilitation process. Check with yours if you can. If you do it TAKE IT EASY. Start of slow and build up, exactly as you would with the walking.

Flu Jabs, operations and colds

I have had cfs for two years now, which was initially brought on by the flu. Is it a good idea to have the flu vaccine? I've been diagnosed as suffering with CFS which I have had for 8 months now.

My flu like symptoms (nausea and joint pain) have now gone and the fatigue is not too bad. The symptoms that remain are muscle pain, and for the last 3 months muscle twitching. The twitchings are sometimes no more than a ticking sensation or ripples with no pain which last less than 30 seconds.

I have read all the information on your very informative web site but I couldn't see any reference to the twitching symptoms I have described. I really want to use your plan for recovery but am concerned about the twitching and seek re-assurance that it is indeed safe to start. I would say that I am definitely stuck in the Boom and Bust cycle at present and am desperate to break out of it.

I am also due to attend hospital as a day patient at the end of November for a minor procedure which requires a general anaesthetic, should this stop me starting the programme now?

Answer:
The Flu question is a common one - to jab or not to jab. IN MY EXPERIENCE of seeing clients, and my colleagues too, the flu jab has very little effect. It MAY make you feel a bit groggy for a couple of days, like having a mild cold, but you should handle it in exactly the same way - just keep going. On this note there is increasing evidence that recovery time from Colds and Flues is delayed by bed rest rather than sped up by it. Even with glandular fever recent research has demonstrated that graded resumption of activity is much less likely to produce prolonged fatigue than rest.

And so to your question about minor surgery. It's always a good idea to go into these things with a routine already established. It's like having a basic level of fitness, you'll recover quicker. After the procedure (bearing in mind the surgeons specific advice) get back to a reasonable level of activity fairly quickly and you'll probably get over it sooner.

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