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Chronic Pain and Fatigue – Exercising

28 Nov 13
Megan
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An exercise haiku

Excruciating…
Walking, Downward Facing Dog
Savasana… Relax!

At every doctors appointment I go to they consistently ask “what exercise have you done/are you doing?”  My usual answer is that I’m trying to do as much yoga and walking as I can but that doesn’t mean I’m doing something every day. In fact, when I was trying to do something every day I was getting worse and worse.

The doctors don’t normally like this answer and one in particular keeps telling me I should be walking 4 times a day; only short walks, but it should be every day. I saw 3 doctors this week and every single one of them thought I should be doing Graduated Exercise Therapy (GET). This is where you build up your ability to exercising ability over time by starting at 10% less than what you’re currently able to do and slowly (very slowly) increase this. BUT it means consistently exercise every day for a certain length of time no matter how you’re feeling.

Thank you very much doctors. You obviously haven’t read the recent research that show that GET can be detrimental to the health of someone suffering from Myalgic Encephalomyelitis (ME, formerly known as Chronic Fatigue Syndrome), which is what you have diagnosed me with.

Yes, I know there is controversy surrounding this research but I would rather not risk my health getting 100 x worse. So, I’m going to adapt what you have recommended me to do to be more of a pacing than a GET form of exercising because I really don’t want to become too de-conditioned but I’m not going to push myself too hard. I’m going to listen to my body and if I really don’t think I can manage something I’m not going to “push through it” and do it anyway.

What I am going to do is this:

Yoga

I will aim for a minimum of 5 minutes of yoga each morning to stretch out my sore muscles. Whenever possible I will do a second 5 minutes in the afternoon. I will slowly build this up as I would like to get to the point of being able to do a class or video again. At this stage I’m making my own programs using my Yoga.com App (I’m not being paid to endorse this App but I really am enjoying using this App so I thought I’d write about it). This App has a lot of wonderful Yoga programs on it but it also allows you to design your own. I use the breathing programs already on the App but because I’m only up to 5 minutes of yoga at a time I can’t use any of their other programs (the shortest is 12 minutes) so I’ve designed my own morning and afternoon programs that are only 5 minutes each.

Walking

I have been doing 3 x 3 minute walks with at least 5 minutes rest between sessions and for the last week or so this hasn’t been happening every day because I’ve been in a fairly heavy crash where it was difficult to even stand up for long, let alone walking more than from the bedroom to the living room, bathroom and kitchen. So, to abide by my doctors wishes as best as I can and start off slowly, I will begin this by spacing out my 3 minute walks with an hour or so between them and do this 3 times a week. If this doesn’t cause me to crash again I will add an additional 3 minute walk to the 3 days a week, fitting with my doctors request for me to be walking 4 times a day. I will then slowly work up to adding additional days.

As we’re coming into summer here, I will ask E to set up my bike on his thingy (can’t think of the word) that makes the bike stationary so that I can do 3 minutes of cycling inside instead of going walking if the weather is extremely hot.

Pacing

Although I have set a time frame of what I want to achieve in the descriptions above, I will modify this day to day depending on how I feel. If I feel I can’t do the yoga every day, or the walk on a particular day I was going to, I will not push myself too far. I will also take into consideration the other activities (not just exercise) that I have planned each day. If I have a busy day in terms of other high level activities I will prioritise and determine if I will exercise that day. This is what I believe separates Pacing from GET!

What do you do for exercise and how often do you do it?

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  5. Trisha November 28, 2013 at 2:59 pm

    Your approach sounds like a much better approach than GET. I’ve read several articles about how GET can worsen symptoms and even the health of the patient. It’s too bad the doctors aren’t reading these articles!

    • Megan S November 28, 2013 at 3:01 pm

      I know, it just frustrates me that they keep suggesting it. I’ve managed one walk and one yoga session so far today and I’m about to go on a second walk. We’ll see if I manage to do 3, I’m still coming out of my crash.

  6. fibrosmart November 28, 2013 at 5:21 pm

    Medical opinions are important, but you are the real expert on you. I find that people often “prescribe” exercise for me (not just doctors.) It’s really hard to explain why I can’t just hit the gym hard every day, but I’ve tried and it just sets me back. Good luck with your plan! It sounds like a good one to me. 🙂

    • Megan S November 28, 2013 at 5:26 pm

      Thanks I know I’ve experienced the prescription of exercise even from those close to me who see the after effects. Luckily I get less of that now, but it is still there.

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  8. someonesideaofluxury November 28, 2013 at 7:31 pm

    I read about research showing that when people couldn’t move, for example after a stroke, but thought through the exercises, their brain was working the same way as people whose bodies were doing the exercises – so perhaps just think your way through the yoga poses. I found that lying outside and getting some fresh air did me more good than exercise (although it is exercise getting the yoga mat and pillow outside and bringing it back in!).

    I just found the story – http://www.sciencedaily.com/releases/2013/06/130611130953.htm – although it says ‘watching’. Maybe this means you can watch Aerobics Oz Style and tell your doctor you did it 😉

    • Megan S November 28, 2013 at 7:37 pm

      Looks interesting. On days I can’t do any yoga I do just lie outside if it’s nice, and like you I find it helps a lot. I guess what I’m hoping to do by exercising is not lose all the muscle I had built up before I crashed. I like the idea of watching being the same as doing but not sure it’ll fly with E 😛

    • sian wootton January 21, 2014 at 6:05 pm

      We were told similar at ME clinic. That our brains will react in the same way to doing something or just thinking about it.
      We did an excercise where we had to think about doing something that we found a struggle, excercise or work etc, really imagine ourselves in that situation. The results were that we all felt a similar physical response to what we would have if we’d done the exercise. So in some ways this could be used to help buildup your level of ‘exercise’ getting our bodies used to the extra activity.
      They were against GET there. Our brains really are quite facinating aren’t they.
      Got an idea for another blog post now. Must write a note before I forget hehe.
      Sian x

  9. dawnhosking November 28, 2013 at 9:01 pm

    I’ve tried pushing myself and that resulted in a rather bad relapse — not an experience I’d like to repeat. I do very much as you do and I feel that wise 😉

    • Megan S November 28, 2013 at 9:08 pm

      Glad to know I’m on the right track 🙂

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  12. Just Another F-Bomb November 28, 2013 at 11:22 pm

    I have Fibro and Myofascial Pain syndrome, exercise that helps one tends to flare the other. I’ve built myself up to an hour of yoga almost daily by starting with a very basic dvd and only doing what didn’t hurt at first. Gradually I’ve progressed to the point that I’ve stepped beyond that basic dvd but I always listen to my body, if I’m in pain then I back off the exercise a little. It’s taken a long time but I honestly feel much better on the days that I do follow my routine.

    • Megan S November 29, 2013 at 8:10 am

      That’s great! I’m hoping to get to the point I can do that too 🙂

  13. The Girl in Yoga Pants November 29, 2013 at 5:28 am

    Ah, the old exercise conundrum. Yep, I’m with you. I’ve been trying unsuccessfully to get back into some kind of regular exercise. I have nerve pain in my feet, quadriceps, back and hands, which is aggravated by yoga and walking. I have tried and tried to get into a regular routine with those, but really, they just kill me. Right now, I’m experimenting with strength training and pranayama. I haven’t been able to do much from being sick, but I’m going to keep trying.

    • Megan S November 29, 2013 at 8:11 am

      That’s my plan, just keep trying but don’t push myself so far I crash again because of it. 🙂

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  17. Nancy Blake March 1, 2014 at 1:04 pm

    Rest is your weapon, recliners and wheelchairs are your tools – you need your energy to get better and if you always leave your body the excess energy to use for that, instead of forcing extra exertion on yourself, you will be rewarded with improvement over the long term.

    • Megan S March 3, 2014 at 9:54 am

      I agree rest is an important tool in our arsenal, it is not the only one though.

  18. Bipolarbrainiac May 19, 2016 at 2:11 am

    I recently switched to Suboxone and am back in pain until it works or I go back. Before this I’ve been really athletic because I lift weights and do the treadmill. I might do it today but lately problem is pain keeps me up at night and I just can’t make appointments because I can’t keep them. I keep telling myself it’s going to get better.

    • Bipolarbrainiac May 19, 2016 at 2:13 am

      the other thing is Pilates Reformer helps though expensive. I feel better for three hours afterwards, I created an ab routine followed by Pilates Mat stuff that takes twenty minutes. Every time I do Yoga, I get injured by some pose that I am not aware of when it happens. I wake up in elevated discomfort the next day. Same with Pilates Mat. I’m exercise bulimic. My issue with chronic pain and lack of exercise is a downswing on quality of life.

      • Megan S May 19, 2016 at 9:56 am

        I haven’t tried Pilates yet. I do very simple stretches/yoga poses that my exercise physio and pelvic pain physio recommended. I’ve recently added in regular bike rides as well as we’ve invested in an electric bike for me.

    • Megan S May 19, 2016 at 9:55 am

      Pain and fatigue does limit what we’re able to do doesn’t it?

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