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Dr Benjamin Levine's POTS exercise/diet programme - what about CFS?

Discussion in 'Lifestyle Management' started by Sasha, Mar 12, 2010.

  1. Sasha

    Sasha Fine, thank you

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    Sorry, kerrilyn, I had forgotten - I read somewhere ages ago that people can only read stuff in the library after they've made 100 posts and the administrators were sorry but couldn't make access general (it's some built-in thing). But they will give an individual access who requests it, I think they said.
     
  2. Sasha

    Sasha Fine, thank you

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    I've found an answer to my own question! The Pacific Fatigue Lab homepage is here (it mentions the Workwell Foundation), and it has further links on the righthand side (just under the photo) that I hadn't noticed. The links include info for patients who are considering having testing in their gym, and a contacts page with Staci's email address, phone and mail address.

    I will email her!
     
  3. Sasha

    Sasha Fine, thank you

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    Here's a summary I just found on the CAA website written by Staci Stevens and her team about their exercise approach to people with CFS (again, not mentioning orthostatic intolerance).

    I still don't really understand this approach and I'm sure that's due to my total ignorance of physiology! For example, when I'm just sitting, am I using anerobic or aerobic energy production? What if I've been sitting for ages? Or do these systems just kick in if you start moving about? And if I were to train using the work-interval system (anaerobic work/long rest, repeated), would that increase the length of time that my anaerobic system would be dominant in lengthier activity? How much time is is possible to extend it, given that it seems to be pretty much gone in 5 mins? Or is it "just" for strength training (it's important for OI to strengthen your core and large muscles to prevent blood pooling)? In general, what would anaerobic training get me in everyday CFS/OI life? More strength? More physical stamina? More time vertical? More cognitive stamina?

    Answers on a postcard to "Ignorant but Hopeful", please...
     
  4. Lesley

    Lesley Senior Member

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    Shasha, I will take a stab at your questions.

    I think the anaerobic threshold is triggered at a certain heart rate, and generally should not be reached just sitting. With OI, you would still have the problem of lack of oxygen to the brain, so you wouldn't tolerate prolonged sitting, but maybe for a different reason.

    With POTS even minor activity or standing can increase heart rate dramatically, so everyday activities can cause you to exceed the anaerobic threshold. I found that I could be active and upright longer by staying below the threshold. In my notes from Workwell it says that with thel exercise program you can raise the threshold. You can also build muscle, which will help with OI and help you use less energy doing everyday tasks. I know that they have said that it may be possible to increase your tolerance for activity.

    There's an article on using a heart rate monitor for pacing from Bruce Campbell's self help program that I may have already posted. Here's a quote:

    The article is here:http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
     
  5. BEG

    BEG Senior Member

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    Cardiopulmonary Exercise Test

    Sasha, Your O.I. posts are great. First, to understand your heart rates you must get the CardioPulmonary Exercise Test. That's the test where they put the mask on your face and have you exercise on a bike or treadmill. Through this test, I learned that my anaerobic threshold occurred unusually early -- at 137. This means I cannot sustain this heart rate without exacerbation of symptoms. Actually, I feel badly at heart rates over 100 so that is usually where I set the high range on my heart rate moniter. Sometimes my heart rate goes over 100 just by standing up. You will also learn your VO2 Max or your maximum oxygen consumption. An 80 year old woman has a VO2 Max of 20; mine is 16. This test indicated I have a 35-45% whole person impairment. Stacie Stevens is an excellent person to work with and I highly recommend you have a couple of sessions with her. She told me that my ADL's (activities of daily living) make me crash, and that I wouldn't be able to tolerate any additional exercise. Good luck, Sasha, and keep us updated.
     
  6. Sasha

    Sasha Fine, thank you

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    Thanks, Lesley and Brown-Eyed Girl - this is really helping me to put the pieces of the puzzle together. I got a very prompt reply from Staci Stevens, who told me that they no longer have staffing to do exercise consultations and are concentrating on research and publications. She very kindly sent me a couple of publications: one being "When Working Out Doesn't Work Out" from the CFIDS Chronicle which is aimed at patients, and includes the rationale and a broad picture of their approach; and a just-published paper aimed at physical therapists which was rather over my head (here).

    Under the UK health system, and without any UK specialists knowing anything about this work (let alone anyone I could get to), I think my chances of exercise testing are extremely slim; I'd also be scared of doing such a test in case it provoked a serious relapse. I think I will need to make a guess at my anaerobic threshold, start monitoring my heart rate during the day, and start trying to strengthen my core muscles in 30-second stints with long rests afterwards. I'll also make a careful study of Bruce Campbell's stuff - it looks extremely interesting (thanks for the link, Lesley!).

    It's putting the anaerobic exercise stuff and OI stuff together without guidance from someone knowledgable in both that is the challenge! I wish a specialist/practitioner would write a programme aimed at patients, that we could try out gently and gradually, without the expectation that we have access to specialist testing and support. Perhaps when I read Bruce Campbell I will find that he has done this!

    Amazing readings, Brown-Eyed Girl! So many ways in which so many of us function like we're in our eighties!
     
  7. kerrilyn

    kerrilyn Senior Member

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    Sasha, I think when you get a HR monitor you will be shocked at how quickly your HR rises doing NOTHING strenuous. When I did my Poor Man's TTT my HR only got up to 110 and then it and my BP dropped quickly and I almost fainted (because I was standing completely still). I can't imagine it getting as high as most POTS patients, and I just can't sustain it elevated for long because it drops quickly.

    I've had a relapse since I did the test. My resting rate is 60, soon after standing it's 90 and I've realized I feel a bit lightheaded at 90. The simplest things (to a normal person) like emptying the dishwasher sends it over 100. If I walk very slowly it will go back down to mid-80's, walk too far or too fast it will go above 90 again.

    Today I went out for a short walk with the HR monitor (I was pushing myself but it was such a nice day out!!!) and I stood talking to my neighbour for a couple minutes. Just standing there it went up to 123 and I was feeling really unwell, even though I tried to move a bit and not stand still. I had to sit down quickly, and just talking wouldn't let it come down as quickly as it should have. My neighbour is a nurse and she was concerned that my HR is raising just standing still - she says I should see a Cardiologist. .....the thought of seeing any more doubting doctors is not high on my list of things to do.

    ARG! I want to exercise....as we all do. It sure is hard to stay below the level that brings on more symptoms when just standing up will get you there. Requires patience (and acceptance)! But it's been very interesting learning all the info and realize that something I was unaware of is clearly happening.

    Does anyone know, how do we differ from someone who is *simply* deconditioned? I'm sure I am deconditioned and if I go to the doctor and try to explain what is going on she will say I'm just deconditioned, but I'm not hypertension and my resting heart rate is low, doesn't that mean something?
     
  8. BEG

    BEG Senior Member

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  9. Sasha

    Sasha Fine, thank you

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    Eeeeeeyaaaaaaargh!:eek::eek::eek::eek::eek::eek:

    What a horrible, horrible man. Calls himself a doctor! Unbelievable.
     
  10. kerrilyn

    kerrilyn Senior Member

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    B.E.Girl - That is awful, but can't say I'm surprised. It's outrageous and shouldn't happen. We all deserve so much better!

    What you said makes sense. Another piece of the puzzle for me. My mother has COPD, and arteriosclerosis. If we go for a walk together she gets short of breath. I don't think I do. I don't feel tightness in the chest or chest pain etc, instead it feels like oxygen is not reaching my brain, I stagger, I get weak.

    I've probably come closer to fainting climbing stairs than I've even realized, so maybe I'm unaware of exactly how I feel at the time. My mom also seems to be more consistent, she can walk close to the same amount each day and experience the same symptoms at a certain point. I'm more inconsistent. I have bad days and better days, and my endurance and symptoms vary. I would think that wouldn't happen with deconditioning alone.

    Now, I know I have some sort of orthostatic intolerance or POTS. Around here everything is ignored or chalked up to adrenal exhaustion, maybe that is part of it and tomorrow I'm doing a cortisol saliva test and then I'm going to check for anemia and keep going from there to rule things out as a start. And try the short bursts of exercise and strengthening to help with deconditioning, that I know is also happening to me.
     
  11. Sasha

    Sasha Fine, thank you

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    Accidental massive aerobic workout!

    You were right there, kerrilyn! I just got a finger pulse oximeter this morning (was having trouble with the monitor I bought, I think it's faulty) and started wearing it. My resting heart rate was 70. By the time I'd walked downstairs and 50 yards it was 100; by the time I'd walked two more minutes at a normal pace it was 120! And I felt fine! I couldn't tell at all from how I felt that it had gone so high. When I got back and came up the stairs it was 135. :eek: I had calculated my anaerobic threshold as 102 bpm so presumably that means that my trip to buy the morning paper was a big aerobic workout. Oops!

    I'm very confused now about the anaerobic threshold thing. I found this heart rate zone calculator when I was checking how I'd calculated my anaerobic threshold. It seems to indicate that at lower heart rates (high, but relatively low - 128 to 149 bpm, they're suggesting) you're in aerobic zones, then only over the anaerobic threshold at a higher rate than that. I thought that Staci was saying that we had to stay under our anaerobic threshold heart rate to avoid going into the aerobic zone which would have a higher heart rate. Have I got this all wrong?

    I'm sorry to hear you've had a relapse since the test, kerrilyn - do you think the test caused it?
     
  12. kerrilyn

    kerrilyn Senior Member

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    Hi Sasha,

    I know, you may not feel (symptom wise) how high your HR is but being aware of it now and 'working by the numbers' (as referenced in Bruce Campbell's articles) makes sense to me now. It's just easier for me to 'see', so therefore pay attention, BUT I have still ignored it at times when I have something to do at that moment. Not fully mastering the art of pacing.

    I do think the test made me relapse, because I came close to fainting. What I've noticed is that my resting HR has gone from 60 to 70-75 range and my head has a pressurized feeling, especially around my ears, almost like a vibration. And when I stand up for a bit I definitely feel light-headed now, the pressure increases, I'm more unsteady on my feet, dropping things and I'm more aware of my heart beating faster. I even felt palpitations after a dentist visit. So I'm either more aware of the symptoms now, or experiencing more OI/POTS symptoms when I stand up (I have had these feeling before and didn't attribute them to anything in particular) and maybe it's because my resting HR is now elevated, so my HR is moved up higher on the scale than it normally is. ....if that makes sense.

    I can't give you much info about target HR zones, because I don't really understand it, but what you are saying makes sense to me. The link you provided seems odd, and has higher numbers in general than the info in my Polar HR monitor booklet. Polar lists max HR as 220 - your age and then 60-70% as light intensity, 70-80% as moderate and 80-90% as hard intensity. I'm 40 and at light intensity the range is 108-126 (can achieve that just standing), that link says it would be 136-147. I think I'd pass out at that level.
     
  13. Lesley

    Lesley Senior Member

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    I'm not convinced the whole Levine program will work for us, but the idea of doing recumbent exercise makes sense, so I got a bicycle contraption to use at home. It's just the pedal part, so you sit in a chair. It also allows us to follow the recommendation from many CFS docs to exercise for 5 minutes, then lie down and rest. Hard to do if you go for a walk or go to the gym. For now we are starting with 5 minutes. On alternate days, we will try some leg strengthening exercises.

    Here it is: http://www.amazon.com/gp/product/B000PEM63K/ref=oss_product I liked the idea that is was cheap ($35) and doesn't take up much space - otherwise a real recumbent bike would be better.
     
  14. Sasha

    Sasha Fine, thank you

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    Oooh, great find, Lesley! Thanks so much for posting about this - I had no idea such a thing existed. I had been thinking what a pity it was that there was no way of me getting to a gym to do just a few minutes of recumbent bike at my own pace (I'd be pretty much finished having got to the gym in the first place!).

    UK people - Lesley's specific make & model only appears to be available in the UK if you have it sent from the US (e.g. from overstock.com who I don't know or maybe even Amazon.com if their supplier ships to the UK), but if you go to UK Amazon and search for "pedal exerciser" (make sure you select "Any department") there are similar things including some that offer variable resistance such as this one for 23 (what a bargain!). :victory::victory::victory:

    ETA: I've just looked on UK Ebay (again using "pedal exerciser" as my search term) and have found a wider selection including a few that look a bit more like Lesley's and which I'd have more confidence can offer enough resistance for an incremental strength programme. I'm not posting a link because Ebay listings go out of date very quickly but I can see that seller "evmonline" for example has an online form for disabled people to declare themselves as eligible for zero-VAT rating on that item.
     
  15. kerrilyn

    kerrilyn Senior Member

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    Very cool! Thanks Lesley. I don't have the space or money for a big bulky bike - this is great.

    For any Canadians out there, I found similar product on sears.ca
     
  16. Lesley

    Lesley Senior Member

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    I've found that the more I spend, the less likely I am to use it!
     
  17. Sasha

    Sasha Fine, thank you

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    Despite all your help (thank you!) I've still been feeling a bit baffled by the underpinnings of some of the Staci Stevens approach due to my ignorance of all things physiological. So I've started a parallel thread specifically on my questions about that (in a non-orthostatic intolerance context). There's already a very interesting response from new forum member Wonko, who has also posted on a new "weightlifting in CFS" thread.

    Meanwhile, just went outside with my new vibrating-alarm heart rate monitor and was amazed how much I kept going over my anaerobic threshold heartrate. There was just no way to get back up the stairs to my flat without going over it! I was also amazed how I was also going over the threshold just dawdling along the pavement. It's going to be quite a skill to learn how not to go over it.

    I'm also wondering how accurate a calculated threshold (using the 220 minus age in years all times 0.6 formula) is likely to be. I've got no chance of getting it tested. Dr Bateman mentioned a "Linda" whose threshold rate was tested and found to be 80; unless Linda is 87 years old, that's a much lower threshold than the formula would give.
     
  18. Lesley

    Lesley Senior Member

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    I think the calculated threshold can be way off. They suggested that I try not to go over 100, but I can do that rolling over in bed. My resting HR is high, and it jumps with any activity. After recording my HR for a few days, I decided that I would try using a limit of 120. Doing that during daily activities really made me feel a lot better.

    I think I read that she said the anaerobic threshold tended to be abnormally low in people with CFS, and that they usually found that it was between 90 and 110. I wonder if that is different for people with POTS.
     
  19. Sasha

    Sasha Fine, thank you

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    That's very interesting, Lesley - that's amazing that you get to 100 just rolling over in bed!

    How did you choose your limit of 120? I've read that Staci advised people after they reported back on how they monitored themselves but I don't understand what to look out for. Also, I've heard people say that they chose a limit based on how they felt but because my PEM is delayed I doubt I'd be able to pin feeling crappy on any of my various heart rates over previous hours. Or is it to do with seeing if you immediately feel tired?
     
  20. Lesley

    Lesley Senior Member

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    I was making an educated guess. I looked at what my HR did when I was doing the kinds of things that I found difficult. For example, showering and getting dressed, walking too fast, laundry. A lower limit would have made it impossible to do many normal daily activities. With a limit of 120, I could sit down, slow down, or take breaks, and still do the things I had to do.

    Interestingly, before I had CFS I worked out using a HR monitor. My heart rate got to the recommended level for aerobic exercise just walking at a normal pace, so I had to go higher to feel like I was really exercising. I had to do a lot of strength training sitting down for the same reason, so for example I would do a leg press machine instead of squats. I think my POTS had started already.
     

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