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Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
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Pacific Fatigue Lab disability testing

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by helen41, Sep 4, 2010.

  1. Lucie

    Lucie

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    Interesting to hear of your experience, Helen.

    I worked with Staci via telephone to discover my aerobic threshold and to get some exercise instruction. (Workwell Foundation. You can find it on Google.)

    The way that she estimated the aerobic threshold long distance was for me to wear a heart monitor, record my activity and my perceived exertion rate (according to a number scale that she provided). As best I remember there was a certain level of perceived exertion (and corresponding number) that indicated you were going into aerobic activity.

    Mine occurred when my heart rate was surprisingly low: 83. But my heart rate is usually low, sometimes as low as the high 40s. After finding my aerobic threshold, I was advised to wear my heart monitor, set the beeper so that it went off when I reached 83. I was supposed to sit and rest for one minute before continuing activity. She told me that doing this could help in coming back from crashes and relapses. I think it helped, but I am concerned about de-conditioning. It is very hard for me to do any exercise without going over my aerobic threshold. (I don't wear the monitor now, but the biofeedback has me trained so that I can feel when I pass that point.)

    I hope I'm remembering all this correctly.

    Also in regard to having low temperature when exercising - I never took my temperature while exercising, but I did record that when I had PEM my temperature and heart rate dropped. I also use awareness of my lowered temperature to let me know I need to rest more.

    The way the body reacts in this illness is actually very interesting, despite the frustrations it brings us. Seems to me like it would be a fascinating area to do research in.

    Lucie
  2. urbantravels

    urbantravels disjecta membra

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    Another question for helen41 or anyone who has done the testing at PFL - Did you get any information out of the procedure, apart from the disability documentation, that helps you manage your condition? There was a mention of them telling you a maximum heart rate, anything else in the way of specific advice that they give you based on your testing results?
  3. helen41

    helen41 Senior Member

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    UB, as Lucie wrote, the only management tool I got from the testing was to wear a heart rate monitor and not to go above 113 beats/min. Today is my first day wearing it and I'm shocked at what will set off the alarm! Brushing teeth, pouring coffee and lifting the laptop onto my knee all did it. I think I'll be crawling around at a snail's pace like Lucie.
    I did go to a neurologist yesterday (initially when I was referred they suspected MS). He said he was impressed with the report and planned to read it again to see if he could use that type of testing for other patients. That being said, he then segued right into narcolepsy testing, so he might have just been polite.
  4. Lucie

    Lucie

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    I worked with Staci a few more sessions to get some appropriate exercises. The hand exercises were particularly helpful, as they enabled me to get some flexibility to do some art again.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Did they specifically show you where to find the data (113 beats/min)? or was that given to you at a later time?

    thanks

    GG
  6. August59

    August59 Daughters High School Graduation

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    Hi Helen41 - You mentioned that your neurologist "segued" right into narcolepsy. I'm guessing that you meant some type of testing for narcolepsy? If so, did they find anything that indicated narcolepsy (if you don't mind me asking and I certainly understand if you do)? The reason I ask is that I recently tested (PST & MLST) positive for moderate to severe narcolepsy, where as 2 previous sleep studies (PST only) didn't result in this diagnosis.
  7. helen41

    helen41 Senior Member

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    GG, that max heart rate was given to me at the time. It was the BPM at the anaerobic threshold on the second day. I don't know how they measured that, but Lucie might be of more help.

    August- another Leo! I actually have never had testing, and will go for a sleep deprived EEG next week. Apparently overnight sleep labs are no longer funded by our government health plan. Truthfully, I don't think I have narcolepsy. I did have multiple sudden episodes of 10 minute sleeps during the day, and when I tried to return to work last fall after surgery I repeatedly fell asleep at my desk. An internist put me on modafinil, which really helps, and he wrote he couldn't rule narcolepsy out based on my symptoms. I expressed doubts, my GP suggested I embrace the diagnosis until I was accepted onto disability as narcolepsy would be an easy acceptance. It didn't work.
    My understanding of narcolepsy is that people are awake one moment and asleep the next. I don't have that. I have a falling off a cliff feeling for a minute or two, where I know I have to sleep, and I just can't resist. I have time to find a spot to park the car, etc. My reasoning powers go out the window and people close to me have learned to recognize it in my speech and will just tell me to call back later when I'm over it. I think this is more of an exertional thing than narcolepsy and the neuro agreed, but said he would like the EEG just to cover all the bases. Sorry I'm not of more help
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Oh I see on my fo.rm Heart rate at AT 139bpm.

    So just a little higher than yours.
  9. helen41

    helen41 Senior Member

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    It's been interesting trying to stay under 113. I must have set off the alarm a hundred times yesterday.
  10. urbantravels

    urbantravels disjecta membra

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    I've actually been trying to get going on heart rate monitoring myself. I remembered that I *used* to have a heart rate monitor years ago, back when I used to run... :( and that it was probably in the hands of my ex-husband....so got it back from the ex (we're friends) ...didn't work so I replaced both batteries...and then the rubber chest strap broke after a few hours of monitoring. So much for saving a buck; guess I need to spring for a new one.

    I found some generalized instructions here

    http://www.cfidsselfhelp.org/librar...our-heart-rate-to-stay-inside-energy-envelope

    about using your heart rate for self-pacing. I think I could get to a reasonable guess on what my limit ought to be, with the opportunity to collect more data.

    I'm still on the fence about whether to go to fabulous Stockton for the testing; I need to select a lawyer first so he/she can advise me on whether it's likely to be worth it for my SSDI claim.

    for determining your heart rate threshold for self-monitoring.
  11. Cloud

    Cloud Guest

    Thanks for the report Helen. I've been intrigued with the Pacific lab for some time and appreciate hearing from a person actually involved with their testing.

    Getting disability was the best thing I have ever done for my recovery. Not only was it essential, but nothing else would work until I stopped my life. Disability allowed me to do that, and maybe even saved my life. So, I beg to differ that the $2000. doesn't go to "treating your illness". Very wise investment.
  12. helen41

    helen41 Senior Member

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    Thanks Cloud. I agree. I feel like the testing has put me in a position of strength, so it was worth every dime to me. Prior to this I knew I was sick, and the people around me didn't doubt me, but I still felt like a malingerer. I really think that's my other disability :ashamed:. Now I feel like I can hold my head up, and that's invaluable to me.
    Urban, if you are looking for a HR monitor, I settled on the Polar FT4 because it wasn't too costly and the band was fabric, which reviews say is a lot more comfortable. It's not bad. I'm not sure it will work with my underwire bra, though.
  13. urbantravels

    urbantravels disjecta membra

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    I used my now-broken HRM for years without a problem - usually with a sports bra but sometimes with regular underwire bra, underwires didn't seem to bother it any.

    Mine was a Cardiosport, which is a similar brand to Polar, only usually a little bit less expensive for models with similar features. Of course now they've changed all the models so new research is in order.
  14. anncavan

    anncavan

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    Hi Lucie,
    Was this recently? I couldn't find Wellwork Foundation online, and I think I read they didn't have the manpower to keep it open??? I could be making this up, but something in my memory tells me... I'd love to know how to ascertain my AT, and then wear a heartmonitor to watch throughout the day...
  15. BEG

    BEG Senior Member

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    Hi Helen, My temperature dropped, too! The report said that I have an endocrine problem due to this, and that I wouldn't be able to tolerate stress, either. Posssibly an adrenal problem? Will need to pull report for exact reading.
  16. Lucie

    Lucie

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    Response to Anncavan:

    I e-mailed Staci Stevens and rec'd word from her yesterday that because of lack of time and staffing, she is unable to do telephone consultations at the present time. In the future, as staffing permits, she hopes to resume the service.

    Sorry, if I got hopes up on that one :(

    Ann, I am experiencing a set-back from a flu-shot right now, but when I can I will try to get back to you by PM and relay to you as much information as I have - if I can find the papers Staci sent me.
  17. helen41

    helen41 Senior Member

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    my report said "A failure of core body temperature to rise during exercise suggests dysfunction of the neuroendocrine system"
  18. Lucie

    Lucie

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    Ann, here is an article that explains how Staci Stevens uses the heart monitor and perceived exertion rate to help distant patients find their anerobic threshold. You will need to read down some into the article to get to the info.

    http://www.cfids.org/cfidslink/2010/100604.asp
  19. helen41

    helen41 Senior Member

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    I won!

    The fatigue testing was so, so worth it for me. I had been denied twice by disability and was waiting for a final review scheduled for next Feb. My last resort before court.
    I submitted my Fatigue Lab results to the review panel who forwarded them to my insurance company. Today they called and have reversed themselves. I have been put on LTD retroactive a whole year! I was told that their medical expert reviewed the report and was "fastinated", plus they suggested I might want to consider seeing an endocrinologist as my results were unusual. (I held myself back from saying "told you so")
    What a relief!
  20. glenp

    glenp "and this too shall pass"

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    WTG Helen - I am so glad that worry is over for you
    glen

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