Managing chronic pain: tips you won’t find elsewhere

Since developing chronic pain, I’ve been surprised by the general unhelpful nature of information out there. My friends and family thought doctors would solve everything, but to be honest they didn’t do much to help me, and physio didn’t work for me either. I’ve written this post to share some of the things that really did work for me, and that I wish I’d thought of trying sooner. Don’t worry, none of it involves some weird snakeskin oil on Amazon or anything like that ‒ it’s all quite general stuff and best of all, it won’t cost you anything or take a large amount of time!

And no, I’m not going to do the usual and suggest you eat well, exercise and try to get a good night’s sleep.

Typical advice for managing pain can sometimes be quite depressing for those who have tried the suggestions already and not found them possible or helpful. So, time for some new ideas!

Analyse

I first began properly analysing on the advice of a speech therapist. She wanted me to map out the times of day when using my voice was painful and to note whether various things had positive, neutral or negative effects on it. Through this analysis, I discovered that steam inhalation helped, as did gargling, certain reflux medications and voice relaxation techniques, while other things didn’t help.

I continued this investigative approach for some time, playing around with the times I took medication (with my doctor’s approval) and the times I did inhalation and voice exercises. In particular, gargling and taking Gaviscon before making a phone call really helped, as did spreading out my reflux medications across the day and not talking in the morning until I’d done an inhalation and had a cup of tea to warm and moisten my vocal cords.

To get started, I’d advise you make a chart with each hour of the day down one side and all the things you can think of that might influence your pain levels down the other. Then note in each box when you’ve done something and what your pain level was. This will help you find trends.

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It feels a bit neurotic, but you can learn a great deal from making a chart to track your activities, meds and pain levels. You can also use one, after the analysis phase, to keep track of your daily targets and encourage pacing. 

When I did this with the leg pain I experience, I discovered that doing things earlier in the day and resting in the evening allowed my leg pain to ease off before bed – since pain when trying to sleep was the biggest issue for me, this was a great discovery.

If you have a chart like this, you can also use it to monitor the effects of medication changes or changes in physio exercises, and so on. You can note your pain levels out of 10 if you find that useful, or just describe it. By doing this, I’ve been able to clearly evaluate the effects of various insoles and changes to my routines.

There is a possibility that your pain is truly random, but you won’t know unless you investigate it.

Find your limits and decide when to be flexible with them

Once you are taking note of your pain levels and activity levels, you can more easily manage your pain. Of course, in some instances you will not have control over triggers e.g. work or childcare responsibilities. Some things you won’t be able to change. But you may still discover or think of adaptations that could help you at work or when caring for kids, such as ways not to do so much lifting (e.g. take files out of a box and lift individually rather than lifting the whole box) or ways to rearrange your time (e.g. taking kids to the park in the morning rather than afternoon).

Once you have done your best to arrange your medications and carry out activities in the optimal way, you can think about spreading your activities out over the day or week. For example, maybe you can do half an hour of cleaning daily rather than doing it all at once on Wednesdays. The usefulness of setting limits and spreading things out is that it may get you out of that boom and bust cycle where you constantly do a lot, get lots of pain and have to rest, then do a lot again… For some people, this will be unavoidable due to inflexible commitments but for many it will be possible to exert some control. While it can be annoying to have limits on how much you can do, it can also be amazing to have fairly stable pain levels and less unpredictability. You won’t need to cancel plans so much (if at all) and you may be able to stop using ‘flare-up meds’. Your friends, colleagues and family can also get some certainty regarding how much you can do.

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Pain management can be quite a fun-buster so sometimes you’ll probably want to be flexible and accept you’ll need a day or two off afterwards. Photo by Angelo Pantazis on Unsplash. 

You might also like to consider when you will be prepared to go beyond your limits and accept that you will have some flare up afterwards e.g. for friends’ birthdays, weddings, a favourite hobby, a work training day etc. If possible, you can then plan to take it easy on the following day(s), or take extra medication.

There is a risk your life will become less spontaneous and fun if you follow your limits strictly: it’s up to you to weigh up the pros and cons of such an approach.

Focus on pain-free parts of the body

This technique is really obvious in a way but it doesn’t crop up in many places. In fact, many will advise you to investigate the pain. This has some advantages e.g. you may realise it’s not as bad as you thought and you may be able to observe it in a less emotional way, even noticing there are some pleasurable aspects to it, such as some warmth or tingling. However, what has really helped me is focusing on pain-free parts of the body. Our mind tends to zoom in on pain. It wants us to be fully aware it’s there, presumably to encourage us to try to stop it. However, with chronic pain this focusing is useless and unpleasant. Keep taking your mind to a different body part, if you have something that’s pain free. It can even be a bit of a surprise to remember it’s not actually you’re whole body that’s in pain! And this may even help reduce the tendency of strengthened neural pathways to form between the painful body part and your brain.

An alternative version of this is imagining a soothing sensation filling the area where you have pain.

And finally…

Check out my post on how to prepare for a physio/hydro appointment, if appropriate

Remember that you are a hero, even if no one but you knows it. Living with pain is super hard and many people will not understand that but congratulate yourself every day for soldiering on.

Treat yourself with love and compassion when you accidentally go beyond your limits. We all do it, regularly, and you shouldn’t blame yourself. Learn to let go.

Cast off the ignorant remarks of ignorant people. Life’s too short. Seek support in those who understand, and try to educate people when you get the chance (see my post on the taboo of chronic pain).

Have you tried any of these tips? Or do you have some of your own? Comment below!

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This is you! Keep going 🙂 And don’t let anyone make you feel inadequate.  Pixabay image. 

Related links

Managing chronic pain:

Useful strategies, such as shifting your focus:

http://www.spine-health.com/conditions/chronic-pain/11-chronic-pain-control-techniques

A free meditation:

https://www.meditainment.com/pain-management-meditation

My favourite chronic pain bloggers, who have useful coping tips and strategies:

http://princessinthetower.org/

https://www.psychologytoday.com/gb/blog/turning-straw-gold

 

Re-examining ‘fear of movement’ (kinesiophobia) in those with chronic pain

 

(This post is especially relevant to doctors and physiotherapists and others who work with those in chronic pain)

What many physiotherapists and doctors don’t understand about chronic pain

In medical jargon there is the expression kinesiophobia, ‘fear of movement’. I’ve always found this an odd concept. It is said that many chronic pain patients experience a fear of movement because of associating movement with pain. So, the assumption is that they fear pain. Those with chronic pain are, by definition, those who live with the most pain. It doesn’t seem natural to me to talk of fearing something that is already a major part of your life. If you wear a suit to work every day – you may dislike it, sure, but you wouldn’t fear it, would you? You might wear it only when obliged to do so, and wear super-casual clothes the rest of the time i.e. you may well limit your exposure to it, but fearing it would be unusual.

Chronic pain is something only those who experience it can truly understand. It isn’t accurate to think ‘well, I know what pain is, so chronic pain is just having that a lot of the time’ (which those without chronic pain tend to think either sounds awful or not too bad at all). Prior to getting chronic pain I regularly played full-contact rugby. I loved it. I loved tackling people. I didn’t mind the bloody lip, the bruises and feeling a bit battered. Doing this once a week was, however, NOT a taste of chronic pain in any way. Nor was ju-jitsu, or taekwondo, or boxing. Nor was period pain, or toothache, or a headache. The relentlessness (and total pointlessness of the pain) is not possible to imagine until it happens to you.

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Just because you’ve experienced pain, it doesn’t mean you know what chronic pain is like. (Photograph by Quino Al on Unsplash)

Imagine you enjoy sitting out in the garden when it’s sunny. One day it’s raining and someone asks you why you’re not sitting in the garden. Er, duh. It’s not much fun in the rain. Do you fear rain? No, it’s just not enjoyable sitting out when it’s raining. So why do some medical professionals really have a problem understanding that people’s preferences change when they live with chronic pain? If anyone wants me to live like I did prior to chronic pain, I want them to sit out in the rain, and enjoy it.

Movement avoidance isn’t necessarily due to fear of harm either

Now imagine you’re someone who enjoys going on walks and also reading. Imagine that you have the option to either read for a while or go for a walk while someone repeatedly stabs you in the neck with a fork, and you can’t stop them. I think I can guess what you’d choose. And what if someone tells you that, although the fork stabbing might be unpleasant, it’s not harmful. You’re still choosing reading, right?

Now what do you think about patients who avoid some pain-inducing activities, choosing to do something else instead?

Only when someone tells you that if you don’t choose the walk you’ll get unfit and get stabbed with a fork during even more activities would you reconsider.

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People need to be given a clear and meaningful reason to do a painful activity, otherwise it just won’t appeal. It sounds simple, but seems to get forgotten.

 

A common belief is that patients avoid movement because they believe pain signifies damage to the body. Well, I’m sure some people do, and it’s certainly right to point out that pain can be completely meaningless and unhelpful, as is often the case with chronic pain.

But that’s not necessarily going to make someone start being as active as they used to be, because some activities are just not appealing any more, or not as appealing as pain-free options. I get headaches watching films, so don’t do it as often as I used to, but have gained a great love for podcasts and audiobooks. I’m not scared of the pain watching a film brings on… I’d just rather do something else.

Of course, what really is an issue and what patients do need to know is that if they avoid all physical activity, they’ll lose muscle tone and may experience more pain in the long run. Knowing this will potentially reduce ‘movement avoidance’ in patients who are motivated by long-term goals; perhaps not so much others.

Also, I’ve come across a few things recently suggesting the role of physiotherapists when dealing with chronic pain patients is to get them moving more. Hmm. Well, if that’s what the patient wants, fine. I’m not totally sure, however, that everyone goes to a physiotherapist wanting to be persuaded to sit out in the rain more, or spend more time getting stabbed with a fork, to continue the metaphors.

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I’m doubtful as to whether patients attend physiotherapy in order to be persuaded to do more physical activity despite the pain. (Photo by Christopher Burns on Unsplash)

More exercise doesn’t always mean less pain long term

As far as I’m aware, it has not been proven that people with all types of chronic pain will be able to get back to their previous level of activity if they do it gradually. I’ve really tried, both with sudden increases in activity and the opposite, gradually increasing walking time by just one minute per month. In neither case did my pain levels decrease and in neither case was I able to keep up the increase, as the increased pain interfered too much with my sleep. I recognise that many people may find that doing more activity builds muscle and enables them to do more with less pain: but it can’t be the case for absolutely everyone.

For me and for many others, limiting movement is about keeping pain levels bearable and being able to work, sleep and enjoy life as much as possible. It’s not always about fear or a poor understanding of pain, or even poor motivation levels. It is a way of coping and it is a pain management system. It might be the best option for some of us, and though exercise-loving physios may struggle to understand, life’s not all about physical activity. Since developing chronic pain, I’ve really enjoyed doing more art, writing, reading and listening to the radio. I do what exercise I can each day, ideally a short walk in my area looking at the nice gardens and the wonderful lake, and sometimes chores and a few all-body exercises. Chronic pain sometimes requires adaptation and change, and perhaps medical professionals should take the time to delve a little deeper into why a patient is avoiding some things, what could help them to do it again, and whether they have found any alternatives.

Related links:

 https://stickmancommunications.blogspot.co.uk/2017/01/hypermobility-reluctance-to-exercise.html

 

Chronic pain: an unrecognised taboo

On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject.

If you’d asked me ten years ago to name taboos in the UK, I’d have said things like ‘female masturbation’ and ‘being transgender’. Twenty years ago, I might have said ‘being homosexual’. Particularly in some circles, these things are still somewhat taboo, but much less than they were. Now I’d include chronic pain, but only because I live with it. If you don’t, you’re probably happily oblivious of the awkwardness around the topic.

The Cambridge UK dictionary defines ‘a taboo’ as ‘an action or word that is avoided for religious or social reasons’. Having suffered from chronic pain for several years now, I’ve only gradually become aware of how often I refrain from mentioning pain, and why. On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject. No doubt this is why I often avoid mentioning it, or mention it briefly and rapidly change the subject myself.

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Living with chronic pain can be a lonely experience when it’s hard to talk about it.

Why the awkwardness?

Are people awkward about chronic pain because they don’t know what to say, like when someone’s parent has died? Or is it because they think you shouldn’t mention it; you should be pretending everything is fine? Hard to know really. Here are my thoughts on possible reasons why people react strangely to talk of pain:

  • Chronic pain, like death, old age and hospitals, is something most people prefer to ignore until forced to confront it. Discussion of these topics causes a sense of unease that people want to avoid.
  • People want to ‘save’ those with chronic pain from talking about something that seems very personal, so strive to change the topic.
  • People are worried about either sounding pitying or heartless, so say nothing or change the subject.
  • Actually, people are only a little awkward but the chronic pain sufferer is expecting awkwardness and that magnifies it in his/her mind.

There’s always the worry that silence means something negative like ‘you need to man up’, especially after actually receiving some rude and inconsiderate comments along these lines in the past.

Then there are other reasons why people with chronic pain don’t talk about it:

  • Fear of sounding like you’re complaining and fishing for sympathy.
  • The complexity of the subject, which can only really be covered fully by a long conversation.
  • Fear of sounding ‘soft’.

This article sums up brilliantly the many reasons why revealing a chronic pain condition can make a person feel very vulnerable: it can feel like you are in a no-win situation. But the less you say (or are able to say, before the topic is changed!), the more likely people are to jump to the wrong conclusions. The more you can explain, the more people are likely to gain understanding.

Why we all need to help end this taboo

The trouble with any taboo is that it creates repression and shame. People feel abnormal and are unable to obtain the benefits of discussing something important to them, such as compassion, getting useful suggestions, and that feeling of carrying a lighter load. And the subject of the taboo remains poorly understood, shrouded by prejudices. Estimates of those living with chronic pain vary, but it is undoubtable that the percentage is high: about 7.9 million people in the UK experience moderately or severely limiting chronic pain (between 10.4% and 14.3%) [1]. How many people do you know with chronic pain? Does it match these statistics? If it doesn’t, then maybe you know some people who are living in the silence of this taboo.

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If chronic pain were visible, perhaps life would be easier for those living with it…

We Brits are well-known for a ‘grin and bear it’ attitude and for euphemisms. We say things like ‘things have been better’, when really we mean ‘things are terrible’. Is this helpful when it comes to chronic pain? Well, there’s certainly a need for much ‘patient endurance’, as chronic illness writer Toni Bernhard puts it. And sometimes we do smile, in spite of the pain, and we must. But we shouldn’t feel pressurised to pretend everything is fine if we feel unhappy. We shouldn’t feel unable to set boundaries, to pace ourselves, and to use mobility aids or other aids which ease our burden. Most importantly, we should feel ok about sharing this struggle, this massive part of who we are.

And with 69% of those with the severest level of pain experiencing anxiety or depression [2], improving the social conditions faced by these people should be a high priority. Feeling that pain is taboo isn’t going to lift anyone’s mood – quite the opposite.

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69% of those with the most severe pain experience anxiety and depression, which could be reduced if there were sympathetic listeners on hand!

How can we get there? If you live with chronic pain, try to start sharing when you can. And if you don’t live with chronic pain, be ready to listen, to show some sympathy, and to discuss this issue which has been pushed into the shadows for far too long.

I’ve started talking more about pain, talking about it whenever a good opportunity arises. I’ve started resisting the urge to not talk about it. And you know what? It feels good. It feels a bit revolutionary. It feels like being myself and like opening the door of understanding, even if merely by an inch.

Related links:

http://sufferingthesilence.com/#sthash.QJKIOsPo.dpbs

http://blog.allsup.com/2014/09/nfmcpa-stigma-persists-for-people-with-fibromyalgia-chronic-pain-conditions/

http://www.dailymail.co.uk/femail/article-3204061/Young-people-invisible-chronic-illnesses-like-HIV-Lupus-reveal-conditions-world-new-portrait-series-prove-don-t-suffer-silence-shame.html

https://wordpress.com/read/blogs/120574110/posts/996 a personal description of the advantages of telling people about a health condition

https://wordpress.com/read/blogs/67332141/posts/796   on the stigma of autism

https://wordpress.com/read/blogs/116356880/posts/220  on the stigma of mental health issues

Scholarly articles/research related to this topic:

http://anthropology.mit.edu/sites/default/files/documents/jackson_Stigma.pdf

http://etd.lsu.edu/docs/available/etd-11182013-152753/unrestricted/rlang.pdf

http://www.ncbi.nlm.nih.gov/pubmed/24548852

Other references to chronic pain as a taboo:

http://mikscarlet.com/the-last-taboo-pain-why-does-it-hurt-us-to-admit-to-it/

http://leeockenden.com/specialties/chronic-pain/

http://www.canadianpaincoalition.ca/media/chronic_pain_final_2.pdf

If you would like to suggest a related link, email me!

References

[1] Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies by A Fayaz, P Croft, R M Langford, L J Donaldson, G T Jones, http://bmjopen.bmj.com/content/6/6/e010364.full

[2] The Health and Social Care Information Centre, Sally Bridges, 2012 http://content.digital.nhs.uk/catalogue/PUB09300/HSE2011-Ch9-Chronic-Pain.pdf