Exercising Intimidation-II

I could have equally titled this post: How NOT to Do Medical Exercise.

As with nearly all things related to fibromyalgia, I learned this the hard way. Perhaps so did my Exercise Physiologist (EP). 


At my first therapy gym appointment, last Tuesday, I broke down.

The pain had just shot through the roof and I could not take it anymore. I was tearing up uncontrollably as the pain and effort had just taken the better of me, and nothing the EP tried could ease it any.

So I just laid down, with a box of tissues by my side, waiting for the burning shooting pains from my back into my arms to ease up. I wondered how much of the burn was from the pain and how much from the shame, as I am not one to easily lose control of my emotions in public like that.

What just happened?

At the core, it was a particularly bad day since I was still in the grips of a massive flare. I was super “doped up” on pain medication and muscle relaxers in order to simply be able to get up from bed.

The painkillers had me numbed, but the effort I was exerting to do the tasks was more than I felt they should have required.

The EP reminded me that these were “level 1” exercises and should not require that much effort. It was clear I was performing poorly. She pointed out as much, along with how much more I should have been able to do, especially at my age.

For several weeks now, I had felt that I was making some progress (overall) through our exercise sessions. And since our initial meeting, I had grown to respect my EP a lot as well. She showed me tips and tricks that helped me quite a bit.

But now it sounded to me as if she was saying all the effort I was putting in was not good enough. I felt like I was not making enough progress fast enough. And that really stung.

She tried some other exercises in order to loosen up my muscles. And then asked me to try the initial exercise again, that I had previously performed poorly at. She asked me to “will” the problem muscle groups into relaxing.

So I tried. It wasn’t working.

I was beginning to get afraid that she thought I was a waste of her time and effort.

So I pushed. And I accomplished. I pushed my arms, holding a ~3-ft stick horizontally, all the way over my head, and touched the surface I was laying on.

Then I broke down.

I had managed to “will” my muscles into doing things they were not ready for. And I paid for it by being perfectly miserable the next several days.

Based on this experience, I made several Personal Rules of Exercise Therapy:

(1) Take it extra easy when exercising on quite so much painkillers. I realized they mask the escalating pain until it cannot be handled anymore, and then you feel it all at once.

(2) Do not try new exercise routines, that you don’t know how your body will react to, on especially bad days.

(3) Voice your pain and fatigue more readily, even when not asked.

I can often be really bad at this. I always wonder if it is “really” as bad as I feel it is, and tend to underestimate and downplay my maladies.

(4) Regardless of what anyone else says, listen to your body.

The last one is the most critical, and the hardest for me. If I never pushed myself at all, I would likely never rise from bed. But I never know when it is OK to push how much without the pain getting out of hand. And that boundary changes every day as well. But I imagine it is a learning process, and I hope to get there some day!

I was definitely wrong to push my body (again!) like that, and was probably also over-reacting to what the EP said. But I was also having a very rough day. I guess I was hoping for a bit more sensitivity and encouragement for what I was still trying to do, regardless of the pain and fatigue, than being shown what I could not do. It’s not like the latter doesn’t stick out in my mind like a sore thumb already!

So if you’re an exercise physiologist or physical therapist reading this:

  • I would urge you to consider the fears and insecurities your chronic pain patients might have. I am sure you mean the best for all your patients, but please consider choosing your words carefully. We can be very vulnerable when we feel like our whole lives have been turned upside-down!
  • It would be great if you could take the time to get to know us a bit. For example, I can often look pretty normal even when the pain is getting up there. By the time my face starts to show it, I am close to breaking point. Knowing such things gives you some idea of when it might be OK to push your patient a little, and when it is not.
  • Keep lines of communication open with your patient. Mine did, and we sorted out what happened over the next couple of days. Amidst my continual apologies for losing it that day, we discussed expectations from therapy and how what she said had come across to me. Our discussion renewed my faith in that she was committed to helping me, and we had a great pool session later that week.

Gentle hugs,

Fibronacci

10 thoughts on “Exercising Intimidation-II

  1. You are absolutely right that “listening to one’s body” is the most important rule, and you are not the only one who forgets to follow it. My daughter also often pays the price when she doesn’t heed her body’s messages. I hope you are able to follow your rules and your exercise therapy is more helpful the next time. Good luck!

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    1. I can fully relate with your daughter! It is so hard to listen to your body when, if it had it’s own way all the time, it would never want you to do *anything*! So we get used to pushing aside those feelings in order to function. And sometimes, we end up overdoing it. :/ I am trying to do better, however. Learning more to manage better, everyday!
      Lots of love and gentle hugs to both your daughter and to you! ❤

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  2. I am so sorry that you had to go through such a traumatic experience. Totally agree with the personal rules you have made!

    I have not had much access to any sort of therapy, physio or otherwise. So I am glad that you have, and these will in time show huge benefits. And it is really a lesson that each of us had to learn the hard way, to listen to our bodies. No one can learn it from reading it thousands of times on hundreds of websites 🙂 And it is only the hard way, we recognize where the boundaries lie, where the edge begins, where the slippery slope is, where the safe zone is.. what are the subtle signs that the edge is near… what are the subtle signs that it is a treacherous zone ahead…

    Painkillers are a tricky business. I pushed through life, studies and work for 11 years on progressively high doses (way beyond safe recommendations) of NSAID painkillers. Was I only a few steps away from trying more serious and harmful stuff, I sometimes wonder.

    I take painkillers only once or twice a year now, for 9 years now. I was not an “addict”, I needed them for the pain, but learning to live without them has been a similar journey, in which I have clung to the serenity prayer, I have made amends to myself, and followed quite a few of the AA steps without knowing about them back then. I have had to work hard and make many sacrifices to get to this stage, because it was important for me to stop regular painkillers for many practical reasons. I am glad it worked for me, but it can change in the future of course.

    It also does not mean that one can just be off painkillers with “physical therapy” or “CBT” or “yoga” or “herbal medicine” or “will power” something or the other. Some function best and live life best (as is possible) with painkillers, and some don’t tolerate them well, but still need to take them to survive the pain. There are many with EDS who absolutely need painkillers to get through the day and in general survive the severe pain they are in all the time. That is very difficult to understand for many people, who think this person is just a pill popping hypochondriac. And every one should have the option to make a choice according to what suits them best to live the best possible life – it often requires balancing so many things!

    The biggest balancing act is of course trying to take the edge off the pain and make it compatible with work and life, and yet holding on to the subtle sensations that will warn you when you are pushing your body beyond safe limits in any way.

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    1. Glad you agreed with the personal rules!! Now if only I can manage to follow them . . . LOL! 😛

      I know a lot of people do not benefit from exercising. As with all other forms of pain management schemes, not everything works for everybody. I have found very low grade exercises to be helpful for my fatigue, so I try to do that 2X/week. What you said >> “where the boundaries lie, where the edge begins, where the slippery slope is, where the safe zone is.. what are the subtle signs that the edge is near… what are the subtle signs that it is a treacherous zone ahead… ” << is exactly what I was saying I have SO much trouble with!! But like you said, learning those subtle signs just takes time, and learning comes with experiences and failures. I just have to keep reminding myself to show myself some self-compassion with such repeated failures! 😛

      I am glad you were able to wean yourself off painkillers. I cannot take NSAIDs as they aggravate my asthma. At the moment, I am on a couple of CNS depressants – pregabalin and baclofen (muscle relaxer). I also take tramadol as needed, which is part-opioid-part-SNRI. I have found tramadol is the only thing that even touches the pain during a flare. I try to be cautious with it though, even if it is supposed to have lower dependency potential than classical opiates. But when meditation, CBT, yoga, etc. all fail, it is the only thing that brings me any relief.

      I have been on a lot of drugs throughout my life, and sometimes I wonder whether I'll die of liver failure before I hit 50. But I would rather have decent quality of life for however long I live, than be miserable the whole time. It is a balancing act, as you pointed out, and if the medicines can take the edge off the pain then I'll readily bow down to the pharma gods! 😉

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    1. Thank you for your kind words Laura! I appreciate the encouragement so very much! ❤ I do find that very low grade exercises tend to help my fatigue (more so than not exercising at all), so I try to stick with it best I can. Besides, the warm water pool feels amazing! 🙂

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  3. It is very true that pain meds can mask the pain of a workout until it is too late! Why don’t therapists just tell us these useful things?

    When I feel like I’m not making much progress, sometimes I schedule appointments a month apart. This cuts down on my therapist’s frustration. Then, I find a place I can do them at home or a way to do them at the YMCA so I don’t feel like I’m always having to defend my physical struggles to people.

    Also, I find that therapists have this erroneous theory that if you don’t increase your reps of an exercise every _____ often, you’ll never get stronger. I do the exact same pool workout for months at a time, and it has significantly improved my strength for day-to-day activities. The point is to get through life, not run a marathon, but I think they have a hard time understanding this because most of them run marathons for fun and can’t imagine being this sick.

    I hate when therapists say that thing about “these are the easy exercises, they can’t be giving you pain.” Um, hello, if these were actually easy for us, we wouldn’t be here!!! I wish therapists knew enough to figure out what was causing an illness based upon the fact that exercise is so painful.

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    1. I really do wish PTs could give us useful info like that, like regarding exercising while on pain meds, etc. But ah, wouldn’t that just make life too simple? Besides, I don’t guess that would teach me the biggest lesson I need to learn, aka, how to listen to my body (even when it whispers, lol!!). 😉

      I think you are right about ETs wanting to increase reps after a while, something I haven’t done much at all. We have often talked, however, about balancing relaxation/pain relief in the pool with exercises to increase strength. I feel like the EP thinks I don’t do enough of the latter, but she hasn’t been *too* pushy about it yet, which I am grateful for.

      What you said about exercise therapists not understanding what a chronic illness feels like is so true! I constantly feel like there’s a disconnect between what my EP calls “functional” and what my definition of that word is. She is totally one of the types who would probably run a marathon for fun! Whereas I am happy if I can just pull an 8-hour day without crashing. I explained to her that all I want to work up to is being able to hold a full-time job one day… I am not even thinking of going out for drinks afterwards! Not sure if she understood or not, but I get the impression she wants to “fix” me more than I think is realistically possible. Makes me wonder how much she knows about fibromyalgia!

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      1. I like what you say about not expecting to be able to go for drinks after work. 🙂 In my case, not only would it be too exhausting, but the alcohol itself would probably make me faint!

        I suppose that a lot of EPs choose to be an EP because they want to help people, so maybe they struggle with accepting the fact that we will never be “cured” in the sense of being able to do everything. Sometimes I think my doctors and therapists struggle with acceptance of my limitations more than I do.

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    2. Haha, the no drinking after work was more of an example I was trying to give to her regarding the level of function I am looking to achieve, and how I realize that I will never be quite as functional as normal people. I hadn’t even thought, really, of the how I would even react to the alcohol after not drinking for so long, LOL! 😉

      You are definitely right . . . my doctors/therapists have a way harder time accepted my limitations, as well, than I do. I once read a great article about why doctors sometimes come off as “jerks” to chronically ill patients, and part of it talked about how they feel so helpless around us. Nothing that they do is making us better, and they are in the business of making people feel better! That perspective definitely allows for more compassion towards some of their not-so-great attitudes and actions.

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