Becoming an Expert Patient - article 5: Listening to your body

Learning how to listen to your body and find out what is important and what should be done are key parts of becoming an expert patient.

This is something of a balancing act between not ignoring your body and not over-reacting to every little thing. Learning how to get it right can ensure that you don't stress about symptoms, whilst also making sure that you don't put your health at risk by ignoring important symptoms. It also gives you the chance to have more control over your Fibro.

In this article we discuss:

1. Monitoring your health

2. Dealing with new symptoms

3. Recognising flares

4. How your behaviour affects symptoms

Monitoring your health

If you don't know what is normal for you, then it's tough to know if something has changed. Monitoring your health makes it easier to notice changes, such as flares, worsening symptoms or new problems, and also to pinpoint associations that may help you to control symptoms.

Keeping track of your Fibro related symptoms can be very useful for you both and your healthcare team. This is especially true if you are new to Fibro, or if you have yet to get any control over your symptoms. Keeping a symptom diary of some sort is the most obvious way of doing this, but it can be hard to stick to filling one in. In the long-term it also isn't a great idea for anyone to be focusing on how bad they feel all the time. Filling in a questionnaire or making a note of how you have been on a less frequent basis, such as once a week (at first) or even once a month, can enable you to keep a rough track of your symptoms without making this a priority.

There are a number of charts, questionnaires and other tools for recording your symptoms, ranging from a simple pain questionnaire (where does it hurt and how much does it hurt on a scale of 0-10) to something that looks at not just symptoms but also their impact, such as the Fibromyalgia Impact Questionnaire. At their most basic, these tools are looking to answer the questions: What are your symptoms? What is their severity? How frequently do they occur? Some examples of are discussed in this article: 'Scales and Assessments for Measuring and Recording Pain'.

It is also important to know your vital statistics, including your blood pressure, resting pulse rate, weight and bodily measurements. Not only is it good to keep track of these things for general health, but it can be very useful in monitoring side effects of medications or long-term problems that may be related to the Fibro (such as a change in body shape). Plus, many of these stats can be affected by what you do, in terms of diet, exercise, stress management, etc, and it is easier to keep them under control if you take action early, rather than later. Your GP will usually measure these things on a reasonably regular basis at check-ups, but it is worth asking what the results are and whether they have changed since last time.

Dealing with new symptoms

It can sometimes seem with Fibro, especially if you have recently developed the condition, that more and more symptoms are always cropping up. Learning how to deal with this can make you feel a lot more in control.

A list of Fibro symptoms, such as the one in FibroAction's About Fibro section, can be useful to check whether a new symptom is considered a normal part of Fibro. However, symptom lists, especially those that seem especially in-depth, often don't make clear which symptoms are due to Fibro and which are due to other conditions that may be linked to Fibro but that may require a different treatment. Tendonitis for example, is often seen in Fibro patients. However, it is caused by different factors - inflammation - and requires different kinds of treatments. Similarly, talking to other Fibro patients at support groups, whether online or in real-life can be helpful, but do check whether someone has other health conditions and whether they have had the symptom thoroughly investigated.

It is important to always check a new symptom with a healthcare professional - preferably one with experience of Fibro. Any new symptom should ideally be investigated as thoroughly as it would be if you didn't have a Fibro diagnosis because having Fibro doesn't stop you from getting anything else. And any new severe or potentially life-threatening symptoms, such as chest pain, should always be treated as they would be in someone without Fibro.

However, you have to find a balance between this and between stressing too much over every little thing. If you have a tendency to worry about new symptoms and often find yourself booking a doctor's appointment to discuss a symptom that is gone before you get to the appointment, then the 24-hour rule may be good for you. When a new symptom crops up, wait 24 hours and if it is still bothering you, then make a doctors' appointment. If a symptom comes and goes within 24 hours - and is not serious enough to require immediate attention - then just make a note to mention it to your doctor next time you see them.

Recognising flares

A flare is an increase in symptoms above what is normal for you.

Because what is normal for one person with Fibro may not be normal for another person with Fibro, one person's idea of what a flare is will be different from the other.

Recognising flares is one reason why it is good to know what it normal for you: if you have a gradual increase in symptom severity, it can be easy to miss the change, but recognising that you are going into a flare by noticing an increase in symptoms may give you the opportunity to act to prevent the flare or reduce its severity and how long it lasts.

Some people with Fibro find that, if nothing is done about a flare, then sometimes struggle to recover to whatever their "normal" pre-flare was. Because of this, it is good to be proactive about flares and have a plan in place about how to deal with them once you recognise that one is happening.

Things that may help to limit flares include:

* Increased rest and stricter pacing.

* Stress reduction & relaxation.

* Stronger medications for sleep and/or pain.

* Extra medications, such as muscle relaxants.

* Vitamin or mineral supplements, usually if your vitamin or mineral levels are low.

* Myofascial release massage and/or trigger point injections if myofascial tension and trigger points are an issue.

* Complementary therapies that you find useful.

Note, for more information on dealing with flares, see this blog post: fibroaction.healthunlocked....

How your behaviour affects symptoms

Your behaviour can have a real impact on Fibro symptoms, partly because of the central sensitisation that is a part of the condition - and which makes your body over-react to many stimuli - and partly because of the many facets of Fibro.

Emotional or mental stress and anxiety impact negatively on many health conditions. Physically, stress and anxiety can affect blood pressure, hormone and neurochemical levels, muscle tension, and other factors. Its impact on some of the physical factors behind Fibro - such as low levels of endorphins - means stress can have a very real effect on Fibro, as it does with many other conditions. Stress also has a negative impact on many conditions that people with Fibro have as well, such as Irritable Bowel Syndrome (IBS) and Myofascial tension. Learning how to manage stress and anxiety better is very important for many people, but especially so if you have Fibro. Some people find that Cognitive Behavioural Therapy (CBT) or counselling can be very helpful. for others, biofeedback or learning relaxation techniques is helpful. Just talking about your problems can be very healthy and if you don't want to burden close family members or friends, then a diary or blog may help, as could an online or in real life support group.

Lack of sleep has a negative impact on Fibro symptoms. Although poor quality sleep and insomnia are both possible symptoms of the condition and possible side effects of medications, your behaviour can still have an impact. A good routine, going to bed at around the same time, not too late, every day can help, as can avoiding stimulants such as caffeine in the evening and winding down properly before bed. Something as simple as a more comfortable mattress and pillow can make a big difference when you have Fibro hypersensitivity - I well remember tossing and turning, feeling that every spring in the mattress was digging into me. Some Fibromites find memory foam helpful as it has no springs, and even if you can't afford a new mattress - Ikea does some at very reasonable prices by the way - then a mattress topper and new pillow could still help.

A healthy, well-rounded diet is good for anyone and although specific diets have not been definitely linked with helping Fibro, a bad diet certainly won't help! Getting good amounts of vitamins and minerals will help keep you generally healthy and may help you to avoid developing deficiencies that could impact on your symptoms as well as helping your immune system. Getting good amounts of protein and eating a reasonably low-GI diet, avoiding too much sugary foods, could help your energy levels. Alcohol (and some foods) may interact with medications so you have to be careful of this - and who needs a hangover when you already have Fibro? Diet can also have a big effect on IBS and Reflux problems, which many Fibromites have. And if you have any food intolerances, then they could be worsening what you think of as your Fibro symptoms.

Being pro-active is an essential part of becoming an expert patient. Even if you have a very good healthcare team, there won't always be someone there to remind you to take your medications or supplements, do your exercises, eat the right things, pace yourself and not get stressed. You have to take responsibility for your own actions. It isn't always easy, especially when Fibro-fog makes it hard to remember anything and pain and fatigue can mean you just don't want to do anything. But it has got to be done - if you want to take charge of your health and your healthcare and become an expert patient, then the first step should be to charge of your own actions.

Key points about listening to your body:

* Keep track of your Fibro related symptoms.

* Know your vital signs.

* Make sure any new symptoms are thoroughly checked out by your healthcare team, but don't worry too much over every little thing.

* Learn to recognise flares and be pro-active about combating them.

* Be aware of how your own actions affect your symptoms and take responsibility for that.

3 Replies

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  • very informative and helpfull thanku x

  • thxs alot im lerning more each day on fb x

  • thank you for posting that good advice x

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