How can I tell him?

[Sammijs]

My pain seems to be radiating out to my whole body. Not as severe as the CRPS affecting my left knee, but things like the bed shaking under me, or the seat in the car vibrating seem to make my whole body ache. How can I tell my boyfriend that when he hugs me too tight it hurts? He loves me so much and he likes to spoon me in the mornings, and I love it but it hurts? It's his favourite part of the day, mine too.

[Bananas5]

Try comparing your pain to something he can understand. Raging toothache may come close. I am sure he has had toothache at some time in his life.

Remind him how much that hurts to touch it.

If that fails tell him straight out. You love him but as it hurst so much to cuddle - a gentle hand hold and wordssoftly spoken

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[Sammijs in reply to Bananas5]

Thank you for the advice. He had raging tooth ache a couple of weeks ago so I'll be sure to use that as an example.

Today he has been laying boards on the floor for the new bathroom and the vibrations of him hammering right by me (I was painting the door frame) was making my knee hurt. He thinks that's ridiculous... any advice for getting around that one?

[Bananas5 in reply to Sammijs]

Paint the door when he isn't hammering boards.

You must remember to pace yourself. Maybe you are doing too much and every extra noise or vibration is ten times worse.

Pacing is when you only do a little and stop before you start hurting. It is one of the first things you learn at the pain clinic.

If you are on meds you can not expect them to work twice as hard. They can't.

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[Sammijs in reply to Bananas5]

I've not been to the pain clinic for 10 months. And the doctor I was seeing for pain management before I moved counties put me on a few different meds, gave me some lidocaine patches and did a lumbar sympathetic block then put me on the waiting list for a spinal cord simulator. Long story short I ended up not having it done under the impression that I could be put back on the waiting list once my circumstances were better. Anyway, I was never told about pacing. This exhaustion and more pain is a newer thing though. I'm seeing a new pain management next month.

I've recently started on pregablin, 150 mg before bed. It was 75mg twice a day but I was falling asleep in the afternoon. Seeing my GP this week to discuss.

[Bananas5]

You do have 2 posts running on the same subject. Better to have one then members know where they are answering.

However read this

Pacing to Manage Your Pain

The first rule of chronic pain management is pacing. Finding the exact amount of activity you can do without causing a flare-up of symptoms is almost an art form. The trick is to work out your time limits on activities such as sitting, standing, walking etc., and how long you can do each activity on a good day and how long you can do them on a bad day.

By limiting yourself to always stopping after the length of time you could do the activity on a bad day, you won’t push yourself to do more on a good day and consequently suffering for it the following day.

Pacing is a concept that pain specialists and pain psychologists instruct every client who is suffering from chronic pain. Many chronic pain sufferers are naturally far less active than they used to be and as a result, you may have noticed yourself trapped in a cycle of ‘boom and bust’ with activity and exercise (more details below).

An example of this is someone who wakes up one day and feel they are having a ‘good day’ and so decide to catch up on things while pain levels are manageable. Later that evening the symptoms are flared-up again, resulting in extended rest and ‘bad days’. Eventually it settles and the pattern is repeated again when they feel a bit better.

Another pacing problem is around those day to day chores that need to be done. These are the normal Jobs at work and home that build up around us. If there is a day when you feel better the the temptation is to try and do everything all at once because you don’t know when the next opportunity will be.

A third approach is the ‘never give in’ attitude. Refusing to let the pain beat you and stop you from doing what you want and need to do. This is when it feels you are at war with your pain and you are not going to let it win; the result is harmful on both a short and long-term basis.

With all these ways of approaching activity, it is followed by more pain and for some more inactivity follows as you try and settle it down – the ‘boom and bust’ cycle (see below). Your baseline level of fitness never really improves – if anything it gets worse.

Repeated flare ups of pain lead to more feelings of loss of control, anxiety and isolation as the cycle of chronic pain continues and even worsens. A pacing problem is basing your activity level on how you feel (doing more when you feel good and less when you feel bad).

Good pacing involves basing your activity level on pre-set, reasonable goals – not on your level of pain. To remedy a pacing problem, you will need a Pacing Plan that will help you to gradually increase how much you do of an activity, slowly and safely.

Avoiding Activity

It’s natural to avoid an activity, especially when you know it will make your pain worse. Forcing ourselves through the pain and trying to keep going for as long as we physically can is also a recipe for disaster. An example is when a pain patient is at home and finds it painful to sit up but then tries to do so on a rare meeting with friends only to pay severely for that later.

This may also mean that they are naturally very reluctant to try it again. They don’t want to spend their lives in bed, living with pain is bad enough without additional flares. Yet there is hope. Even extremely deconditioned bodies can be strengthened and your limits increased. Those who have lived with pain for many years can have an increasingly low activity threshold but do not despair, it can be increased but doing so slowly and using pacing is vital.

Baselines and Thresholds

Baselines and thresholds are judged by the length of time you can do an activity before your pain increases dramatically and cripples you. To begin, it may be as little as 30 seconds and then gently increased in micro amounts every week, never increasing by more than 30 seconds in a week. It can take a loooong time but I guarantee it is worth it.

It is vital to stop before the pain increases too much and becomes unmanageable and flares-up. This enables you to do more things and have a regular amount of activity each day instead of doing one or two things, being in too much pain to do anything more and being disappointed and in more pain, unable to do anything, possibly for the entire next day. Look at the example below:

Pacing

This also leaves room for unexpected activities or tasks, because your pain has not yet gone into the ‘getting uncomfortable’ category, your pain is still ‘manageable pain’. Using a stop-watch or timer with an alarm is a very useful tool to remind you to stop.

One difficulty experienced by many people with chronic pain is balancing activity and rest. Some people with chronic pain rest almost all the time. They started this when their pain was in the early stages thinking that rest would help. However they have become so out of shape that movement of any kind hurts – not just because of their chronic pain but because their muscles have become shortened and are tight and tense because they haven’t exercised.

Now that they no longer have the stamina to keep on at a task for even short periods of time. Again, this is most likely due to poor muscle strength and deconditioning on top of the chronic pain. If this sounds familiar, do not lose hope. You can claw back some of you mobility but it is vital to begin and continue very slowly and gently.

The flip side of those who rest too much are the people who force themselves until they get all their work done. They push on despite their pain at whatever cost and then they collapse in terrible pain at the end of the day. To get through the day, they may have taken extra pain medication, may have been irritable and not very pleasant to be around. They may accomplish their goal but it’s at great expense, sometimes even taking days or weeks to recover.

Recovery is slow and depressing. These people are in a vicious cycle of “feel better — push yourself — more pain — collapse”. This is where the “Boom Bust Cycle” applies. Take a look at the diagram below:

A pacing problem is basing your activity level on how you feel (doing more when you feel good and less when you feel bad). Good pacing involves basing your activity level on pre-set, reasonable goals – not on your level of pain. To remedy a pacing problem, you will need a Pacing Plan that will help you to gradually increase how much you do of an activity, slowly and safely.

Maybe you need 5 minutes rest for every 15 minutes of activity, or an hour’s rest for 10 minutes of activity; the point is to find a reasonable ‘comfort’ level (if while in chronic pain there is such a thing!), while still being active every day possible.

Flare-ups can and do happen of their own accord (see Dealing with Flare-ups), but the technique of pacing massively limits the triggers that make so many flare-ups occur. Remember that setting a timer helps you remember rest periods as it is so easy to continue if you feel you can, thus exceeding your limitations and getting pain payback.

Your rest periods are a good time to practice relaxation techniques, sms a friend, listen to music, read a book or meditate. You may discover that you worked productively for a total of two hours, without increasing your pain ‘too much’, whereas, had you pushed yourself to work two hours straight, without a break, you would have increased the pain throughout the evening, night and possibly the next day (depending on your pacing levels), and finished a lot less work.

The idea of planning your activities and planning a rest break before your pain forces you to stop is a key technique of pacing and is sometimes called ‘working to schedule’ – this is in contrast to working to tolerance. When you work to tolerance, you push yourself to your limit.

Over time you will find your good days becoming a thing of the past as the ‘boom bust cycle’ repeats itself. This can be remedied by taking things very slowly and systematically planning activity and rest; by planning and sticking to it, you are in more control of your pain.

[Sammijs in reply to Bananas5]

Thank you. That's so helpful. I thought I had a rough idea of what pacing was but that's just clarified it for me. What website is that from? It mentions diagrams and other links, so I'd like to have a look.

[Bananas5 in reply to Sammijs]

Think that came from Princess in the tower blog

Google chronic pain and pacing that will bring up loads of info

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