Chronic pain: Do but also Don’t do

Chronic pain is just one of those things that is a bit tricky to manage. I know this. You know this. Our doctors know this. And that is why advice seems so… contrary.

  • Exercise…. but stay within your Limits
  • Pace… But make sure you Do things
  • Rest and recover- but Not Too much

What the what?

Chronic pain: Do but also Don't do

Then there is the fact that with chronic pain:

  • We do not want to do things because We Are in PAIN
  • We do not want to do things because the Fatigue is INSANE
  • When we do things we always feel worse
  • When we do things we always need to recover

Okay, so here is the thing… here are the MUSTS of Chronic Pain. And when they are explained they are not Quite as contrary as we think.

Stay within your limits

This is said so that we do no do keep pushing beyond our limits and hurting ourselves rather than staying within them and keeping the pain at an even level. They recommend nudging our limits slowly over time but Not blowing right through them so that we suffer for a week. It is tricky because, guess what, limits change every damn day and we have to figure out every damn day what the new limit is Without exceeding it and screwing ourselves for the next week.

  • So stay within your limits. Always. But they change every day. So there is that. I didn’t make the rules, man. Just telling you how we have to roll. Don’t shoot the messenger.
  • So, yeah, you’re going to exceed your limits sometimes. It is going to happen.
  • Just try not to do it All the time. Because that really, really sucks. That is survival mode hell and no one wants That. So just don’t do that. I did. Maybe you have too. So learning the hard way sometimes is what we do. I do not recommend that. So do not Always exceed your limits.
  • Assess how you feel in the morning to gauge where you think your limit that day will actually be. We generally have a good idea of pain level and fatigue pretty early to know what we can and what we cannot do that day. Maybe. Give it a go anyway.
  • Change plans depending on how you feel that day.
  • If you hit that red flag pain or fatigue stop activities, rest, and you are done for the day.

Pacing

Pacing is for when we are not feeling well AND for when we are having a good day. It is for Both. Which we forget and then do loads of things on a good day which makes for a whole boatload of bad days. The whole boom and bust cycle. Pacing doesn’t mean Do Everything when you feel pretty decent. And it doesn’t mean Do Nothing either.

Tips

  • Always pace. Except we have no choice on some responsibilities and obligations and cannot pace and so that sucks. But other than that Always pace. So… ah… doesn’t work out so well, in reality, does it?
  • But Pace ALL the time.
  • break goals up during the day
  • take short breaks
  • stretch the things you need to do throughout the week instead of all in one day
  • Mix up activities, which forces breaks on you. So ten minutes of housework, half an hour of reading, do dishes, take a nap… whatever. Mix it up.
  • I am quite aware this only works if one is, well, not actually working a job. Because one cannot Pace in a job that has no flexibility. But one can if your job is flexible. I never had that so I can only say pacing works really well when you are not working and really Not well when you are. So I have no clue what they expect us to do then. But flexible work and work with great accommodations and work from home and part-time flex work… all awesome options.

Rest and recovery

There are times when we are in way, way, way, wayX1000 too much pain and fatigue to function and we need to rest and recover. This cannot be every day. But it is some days. Just the way it is.

Too much rest and recovery and that can increase pain and disrupt sleep and cause a whole nasty host of extra issues. So rest when we Must but not all the time.

Tips

  • It is very hard to function on a bad pain and bad fatigue day, so my main tip is some modest movement. Get up at least once an hour for a walk about the house. Maybe some gentle Sitting stretches, to get the kinks out.
  • Try not to sleep too much. Try to do resting activities like reading or games on your phone or social media or Netflix… something to keep you occupied so you do not completely throw your sleep cycle out. But yes some sleep does go a long way on these days.
  • Screw the guilt.
  • Screw the guilt. I said that. But I said it again because I meant it Twice as much.
  • Do your best self-care tips. Nice bath. Soothing music. Meditation. Whatever gets you through.

Exercise

Okay, so when we are disabled and low functionality exercise is fundamentally necessary in order for our muscles to not decondition…. which lowers functionality and increases pain and increases disability. So while it sucks and it is painful and none of us Like it small amounts of exercise go a Long way in preserving the level of functionality we have. I personally loathe it with the passion of a thousand suns, but I do it. I know. I know, you literally want to reach into the computer and throat punch me for even suggesting it. I can feel your hate.

But I am talking modest exercise. What we Can do. Short walks. Some stretches and physio exercises. I do some exercise biking when I can. I can say this, I have to rest a lot with vertigo and it makes my fibromyalgia pain go Nutbars from too much rest, too much being in one position for too long. I need motion. And movement. Just to manage the fibromyalgia pain. And that is very hard with dizziness and vertigo… it has been a struggle which I continue to do because it is fundamentally necessary to do it. So my fibromyalgia has been so much more severe as a result of the fact I cannot be as mobile as I would wish. And I know it. So I try to add in stretches during the day when I can and walkabouts. Anything I Can.

It is difficult because I am compromised mobility wise. But if I don’t I am compromised pain wise. Sort of lose-lose here. I can’t do a routine for sure because I cannot be consistent. So I do what I can when I can and for now… that is all I can do. And sometimes that has to be enough.

Tips

  • Don’t punch me in the face
  • I know everyone and their dog has said ‘hey, have you tried exercise?’ and now I am being a twatwaffle and saying the same thing. But not really. Because I mean Chronic illness exercise. Not a normal person exercise.
  • Exercise for us isn’t running a marathon. It can be a ten-minute walk a day.
  • Start slow and build up slowly from there. So maybe you can only walk 5 minutes, to begin with. Then every week increase it a minute. And slowly you build more tolerance. This applies to all sorts of exercise. But if you are starting, I do recommend low impact walking to start you off.
  • For other forms of exercise, have downtime after due to fatigue, then have an Epsom salt bath to relax the muscles.
  • Exercise every second day, so you have a recovery day. Or alternate. Walk one day, stretches the next day. Different sorts of activities. But, like me, you may not be able to be consistent in your routine. So don’t feel guilty if you cannot. It is great if we Can maintain a nice routine. But if we can’t we just do what we can.
  • Again, this never worked so well for me when I was working because I was maxed out of pain and fatigue… nothing left for Exercise. I mean Really. But off work, it helps with substituting for the lack of work.

It is just that chronic pain needs different responses for different days. Some days that means rest and recovery, yes. All the time we have to pace and stay within our limits. And we do need to work in exercise, that also stays within our limits.

The basic tenet is this: We must Do. But Not Too MUCH. And that isn’t easy. Overdoing is easy to do. And that is what we must avoid. Not doing is easy too- because we want to avoid pain. And that too we want to avoid doing.

We feel like the pain impedes us from going out and about. From exercising. From socializing. From doing things we want to do. And we also Don’t Want to do the things. Thinging is painful. Thinging is exhausting. Thinging too much causes recovery Days.

And certainly, it limits us. And certainly, we have to pace ourselves. But Doing is better than Not doing. Not doing leads to less doing and less doing and feeling worse, and isolated, and less functional. So it is a matter of Thinging carefully. And choosing the things we do. Would I go party till 4AM at a club? Fuck no. Would I do a quiet game night with friends? Sure. I know my limits and my capacity to function and how long I can function and I know I can leave early if I need to. And it worth it in the fun I have. Yeah, it increases pain and fatigue but as long as I choose activities that are not going to blow through my limits, and I prepare, and I rest before, and I don’t do it for long, and I can leave early if I need to… then why not? I’ll be at pain at home too. Might as well have some fun, eh?

When you have a temporary injury we know to rest and recover and not do things. Everybody knows that. It is common sense.

But when you have chronic pain the injury is gone, the pain remains, and not doing things works against us. We mentally feel like surely we must rest and recover and we will feel better, it is common sense, right? Nope. It is not the same at all. Not any more. Even though it hurts and even though we certainly do not like doing things in pain it is better for our mental, emotional, and physical well-being to do some modest things in pain when we can as long as we pace and stay within our limits. So that we do not become isolated. So our muscles do not decondition. So that we have some sort of life in there.

It reminds me of episodic people with migraine telling people that no one with migraine would ever read or be online… clearly they must not have migraine. But, oh, they do. They have chronic migraine and know they need to do things despite the pain to have a life. They know distracting from the pain is a big part of coping also. They know if they hid in a cool, dark, quiet room every time they had a migraine they would Never get out of that room or bed… Ever. So with chronic migraine, because it is chronic, we learn to nuance our pain. And when we have a migraine we feel like we can manage or tolerate we will run an errand or socialize for a short period of time or go for a walk or do housework or be online.

Life with chronic pain is a balance between Doing and Not Doing. Doing and Resting. Compromises between our desires and our capacity to attain them. But never, ever stop doing. Motion is the lotion, as they say for arthritis, and really it applies to every type of chronic pain… you don’t move and you will eventually hurt more and more. As I have experience with my flare of fibromyalgia pain due to the vestibular symptoms being as they are. And the more I rest the weaker my muscles will get and then pain will get even worse, and no one wants that because it takes so much more effort and time to recover from that, if ever.

Just DO. But not TOO much. But never stop doing, man.

I know it is easy to self-isolate and hermit. I do it. I’ve done it for years before. I know it is easier to not do things to save us pain not realizing it can make things worse. Been there too. I just had to find a way to do things with the pain. Not despite it. Not against it. Not fighting through it. But with it- with my limits, pacing, and following my body’s rules. And then… yeah, it does improve quality of life, slowly in increments. Downturns like I have had recently though can make it harder to maintain but we have to try anyway. I can’t exercise every second day anymore, not with this vertigo, but I can, when I can. And forever we move forward. Not stagnant. Onward, people. Onward. Or so I insistently tell myself so I do not rest too much with this vertigo… it won’t do me any good and I know it. I know this lesson. I have learned it before.

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See more

Chronic illness: Your comfort zone and the sameness of it all

Chronic illness: Limits and life

Chronic illness and the art of pacing
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10 comments

  1. Wow, this gets at the utter tightrope one walks when trying to live FULLY with Fibromyalgia. One of the first realistic and specific explanations of the contradictions we’re told. Thanks, Nikki.

    Liked by 1 person

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