Bear with me, because what I am about to say cause you to feel defensive or want to click away. Please keep reading. We overuse physical prompts and support in special education, and we are setting up our students to be hurt in their lives. Whatttttt? Hurt? Yes. Hurt. One in three children who receive […]
I am not a fan of Robert Heinlein. There are many reasons for this but one of them is about the traits of his novels’ heroes. They are often ‘The self-sufficient man’. The fellows could do everything themselves thus never needing help from others. Mr. Heinlein extols his readers (mostly boys) to be likewise and he castigates thems who do not. […]
In my experience, and considering the usual newspaper articles about ‘benefit cheats’ and ‘scroungers’, most people think that the UK benefit system is pretty lax and a lot of people are exploiting it in some way. This post presents a starkly different reality, and shocking statistics even for those accustomed to hearing about how painful experiences of the benefit system can be for disabled people.
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!
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.
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.
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.
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!
Managing chronic pain:
Useful strategies, such as shifting your focus:
A free meditation:
My favourite chronic pain bloggers, who have useful coping tips and strategies:
There is a questionnaire used to supposedly identify ‘fear of movement’ called the Tampa Scale. While I would certainly agree that it is worth identifying which patients have wrong beliefs about their condition and the effects of exercise, I also have serious concerns over some of the elements of this questionnaire. It just doesn’t seem like a rational questionnaire, and yet is very widely used and, it seems, rarely questioned.
I’m going to start with my suggested alternative, then go over the items on the original Tampa scale that I think are not going to help identify mistaken beliefs that could be causing a patient to avoid exercise and activity.
Suggested alternative to the Tampa Scale (for identifying mistaken beliefs − obviously some are true and some untrue as in the original):
|1. I need to move as little as possible to avoid injury||1||2||3||4|
|2. Just because something aggravates my pain that usually does not mean it is dangerous||1||2||3||4|
|3. Sometimes it is a good idea to exercise even though it’s painful||1||2||3||4|
|4. When people with pain gradually increase their level of activity, they often don’t experience increased pain||1||2||3||4|
|5. Although my condition is painful, I would probably be healthier if I were more physically active||1||2||3||4|
|6. Even though something is causing me a bit of pain, I don’t think it’s actually dangerous||1||2||3||4|
|7. Some people with chronic pain find that exercise reduces their pain levels||1||2||3||4|
|8. If I exercise less, I’ll get weaker and am then likely to experience more pain||1||2||3||4|
|9. Worries about injury put me off exercising||1||2||3||4|
|10. Pain always means I have injured my body||1||2||3||4|
|11. Pain always means I have injured my body||1||2||3||4|
|12. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening||1||2||3||4|
Now for my analysis of the original
The ones that make sense (ish):
|3. My body is telling me I have something dangerously wrong. (I suppose ‘dangerously’ suggests an element of dramatization if the problem is not life-threatening etc… though surely more a sign of ‘catastrophising’ than movement avoidance?)
Similar to: 11. I wouldn’t have this much pain if there weren’t something potentially dangerous going on in my body.
|7. Pain always means I have injured my body.
(Probably the most useful one in my view, as this is definitely false and a harmful view.)
|8. Just because something aggravates my pain does not mean it is dangerous. (Very similar to number 7. Patients need to be informed this is true, if they are not aware it is. Though I would suggest amending it to ‘Just because something aggravates my pain usually does not mean it is dangerous’ because sometimes pain is a sign of danger, obviously! Pain can warn us we are about to tear or break something.)|
|10. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening. (Does sound a bit extreme, and shows lack of awareness that inactivity may increase pain long-term.)
Related to: 17. No one should have to exercise when he/she is in pain. (Quite moralistic but I suppose passible. ‘Sometimes it is a good idea to exercise even though it’s painful’ would be better.)
|14. It’s really not safe for a person with a condition like mine to be physically active. (Probably a wrong belief in most cases where the questionnaire would be used, so fair enough.)|
The ones that are problematic either in general or for some conditions (such as Ehlers Danlos):
|2. If I were to try to overcome it, my pain would increase. (Sounds like an unhealthy battle that might well happen that way! Pacing and acceptance of pain are surely more accepted approaches? How about ‘Gradually increasing my level of activity often doesn’t lead to increased pain’?)|
|5. People aren’t taking my medical condition seriously enough. (No comment needed surely?! Whoever thought that was a sensible one?)|
|4. My pain would probably be relieved if I were to exercise. (For many people this won’t be true, so strongly disagreeing is the rational option.)
The same goes for: 12. Although my condition is painful, I would be better off if I were physically active. (What does ‘better off’ mean? Why not say ‘healthier’? That would be true in more cases. Being physically active – another subjective term – might make some people less happy due to the increased pain and fatigue and so ‘better off’ might not feel appropriate to them.)
|6. My accident has put my body at risk for the rest of my life. (Ambiguous. Surely accidents do create a greater risk of re-injury in many cases? Or does it mean at risk of death, which probably would be a wrong belief?)
See also: 1. I’m afraid that I might injure myself if I exercise. (In some cases this might be highly unlikely, in other cases quite likely e.g. if you have EDS and are prone to dislocations and sprains, even during very mild exercise).
The same applies to: 9. I am afraid that I might injure myself accidentally.
A related one is: 13. Pain lets me know when to stop exercising so that I don’t injure myself. (Again, is this really unreasonable in all cases? Since when was completely ignoring pain a good idea?)
And: 15. I can’t do all the things normal people do because it’s too easy for me to get injured. (People with EDS are generally advised to avoid contact sports, for example, so again this is not going to be unreasonable in all cases.)
Also: 16. Even though something is causing me a lot of pain, I don’t think it’s actually dangerous. (Are we really advocating that people do things that cause a lot of pain? I’ve generally not been advised to do that, and indeed if something does cause a lot of pain that could be a sign you are about to or have injured yourself.)
Are you a medical practitioner or patient? I’d love to hear your views!
Do also check out my post on re-examining the concept of kinesiophobia in chronic pain patients.
(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.
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.
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.
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.