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Am I being irresponsible delaying seeing my GP in this crash

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by sueami, Feb 7, 2015.

  1. sueami

    sueami Senior Member

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    I have twice tried to increase my activity level too soon while resting my way out of an xmas crash. Each time i have crashed worse than before but I started to feel better aftera few weeks the first time, started to get closer to tired normal.

    This crash I did short bouts of housework without realizing itwas elevating my HR too much, on Wed. Got a HR monitor and see that I am rising to 110-125 walking around.

    My HR is fine resting in bed. I feel like I should have this checked out but I also feel it will improve with rest as before and I should be patient. I also fear I will cdash again with the exertion of seeing the doc and he will do nothing more than refer me to a cardiologist.

    i just feel like i should waiit a week or three to see if it improves. Am I being foolish or rational?

    thc

    sue
     
  2. halcyon

    halcyon Senior Member

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    Perhaps you can just call your GP and ask for a cardiologist referral?
     
  3. minkeygirl

    minkeygirl But I Look So Good.

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    Most docs won't refer you to a cardiologist without first seeing you and doing an EKG in their office.

    I get all sorts of crazy issues when I'm in a crash. High BP, low bp, fever, sweats.

    I think you have to judge for yourself. If you're sufficiently freaked out then go.
     
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  4. halcyon

    halcyon Senior Member

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    Good point. Maybe see if they could set you up with a 24 hour holter monitor?
     
    sueami likes this.
  5. sueami

    sueami Senior Member

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    I'll see if I can get a phone consult and/or monitor my husband can pick up. Good idea. @minkeygirl, I am feeling much less anxious and slightly more energized, affer two days of resting so by Monday I hope to feel even better.
     
  6. minkeygirl

    minkeygirl But I Look So Good.

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    It just takes time to recover. And I find I
    Really freak myself out when something is off. Any new ache or pain has me thinking I have something deadly

    I have a panasonic BP monitor I use when I remember. It's pretty accurate. I got it online but I think Walmart has them.

    Maybe get an EKG when you're not so freaked to rule out anything.
     
    sueami likes this.
  7. Alea Ishikawa

    Alea Ishikawa

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    @sueami - If you haven't done so already, I would suggest keeping your heartrate <110. There's a formula to roughly determine what a CFS patient needs to avoid anaerobic threshold, perhaps based on age. It should help with energy consumption - the less you do it, the smaller the kickback. You'll still need to watch your activities, however.



    Based on personal experience, I would get POTS ruled out. Does your HR start in the 70s when laying down and elevate by 30+ bpm within 5 minutes? If so, you may want to consider a full tilt-table test, which might be doable at your local hospital if you can get a referral. If diagnosed, your doc might be able to put you on a beta blocker or something, which might help improve your quality of life. It can be a mixed bag, though.
     
    Valentijn likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    Here's a graph with ages which shows when people tend to get into aerobic and anaerobic exercise... things depend on age. Unless you are under 39 at 125 beats per minute, you arent reaching an aerobic range. http://en.wikipedia.org/wiki/File:Exercise_zones.png

    With the ME, unfortunately I find I go into the hard core training range (anaerobic exericse) on that chart for my age, just if I get up to put on a pair of jeans.
     
  9. Alea Ishikawa

    Alea Ishikawa

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    People with CFS were found to have a lower VO2max and reach anaerobic threshold earlier vs. healthy controls.


    There's a poster here who reiterated the formula:
    For a 39-year-old CFS patient, their estimated anaerobic threshold would be around 108.
     
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  10. Kati

    Kati Patient in training

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    Your dr would be useful if you need to get on record for disability purposes that you have tried to increase your activities but it has resulted into a crash.

    The other reason your doctor would be useful is if your heart rate goes up when you are upright, which could suggest POTS (postural orthostatic tachycardia syndrome) which is common with patients our kind. This should only be diagnosed by a knowledgeable dr, preferably also a ME expert (Dr Klimas has been excellent for that)- I was started on low dose Atenolol which has improved my POTS greatly (however I am still sick). Unfortunately physicians who are not knowledgeable with ME are useless.

    For learning purposes (I assume you are newly sick, apologies if you are not) it is preferable to not increase your activities by too much, and it is preferable to avoid crashes at all when possible, and if it's not possible, it is preferable to minimize your crashes. You can do so by having frequent rests (horizontally,in a low stimuli area like your bedroom) and should you over exert, to double your resting time and not go back to the offending activity until your symptoms are all gone.

    It may sound frustrating, because we are all over-achievers wanting to return to our favorite activities and wanting to contribute to social or family activities. However you need to listen to your body and pick activities that are not likely to give you symptoms.

    Best wishes.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Kati Very well said and whereas I can off of on tangents trying to explain my point, you explained it really well!

    I am also on low dose Atenolol and it is by far the most helpful medication I have tried (even though I am still sick as you said.). Without Atenolol I think I would be completely bed bound with ongoing episodes of my HR up to the 170's which were debilitating. I also feel Atenolol is greatly reducing the "micro vascular angina spasms" that I was getting.

    I also agree with you that seeing the doctor and getting things documented can help with disability case (if this is relevant.)

    As far as resting vs. wanting to achieve things or join in with social and family activities, this is very very hard for me and I still struggle with it.
     
  12. sueami

    sueami Senior Member

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    i ha e been makingmyself panicked over my POTS and HR increases. I have taken off the monitor for now, for my mentall health. I need to stay in bed as much as possible outside of bathroom breaks and eating. that's all I need to know. seeing my HR go up to 120 or higher makes me fear that i am causing another crash and that triggers panic HR increases thatmake it even worse. I will call my doc tomorrow but it may bea crapshoot as to whether he will be helpful.
     
  13. halcyon

    halcyon Senior Member

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    I understand but try not to worry too much. This is extremely common with ME patients and it's probably just inappropriate sinus tachycardia. I would definitely try to get a 24 hour holter monitor and/or echocardiogram just to put your mind at ease, but it's far more likely to be an autonomic problem rather than something wrong with your heart.
     
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  14. sueami

    sueami Senior Member

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    ty @halcyon for the reassurance. more than anything i have worried that elevated HR from just standing or walking could crash me again, as my 10 mins of hiusework did. i have tolet go of that worry.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    Can you see a cardio or other specialist without a referral from your GP, or can referral be made by phone or email, so you don't have to exert energy for two appts vs. one? I know every insurance co is different.
     
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  16. Kati

    Kati Patient in training

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    @sueami I myself do not wear a heart monitor, and yes it could drive you nuts.
    I go by feel. If being upright doesn't feel good, I return horizontal. If you need to do certain activities, like preparing food for instance, break it down in quick steps, spaced with time laying down. I also bring a chair in the kitchen so if I need to do something, I sit instead of stand.

    Make sure your Dr documents your symptoms accurately. It matters if you have to deal with disability insurance later. Keep a journal of your symptoms. Bring notes to your Dr about symptoms and activities, and ask that it is attached to your file.
     
    sueami likes this.
  17. soxfan

    soxfan Senior Member

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    I wore a Holtor monitor a few years ago...my doctor did have to send me to a cardiologist first. They did an EKG in the office and then hooked me up to the monitor.
    I wore it for 24 hours and while at work which is when I always felt like my heart rate was going up but it showed totally normal...I kind of wish I could have worn it for a couple days.

    They also at the same time did the TTT on me so I got everything done in just a few hours which was nice. Tiring but nice....that also showed no problems.

    I do have occasions when my rate goes up randomly but really not too often. I think you are making yourself more stressed from keeping an eye on the monitor.

    When I am in a crash I am only upright 30 min and then am back laying down. I know that is the only way to get out of the crash...it might take days but is the only way I can get through it. I don't worry about anything else when in a crash except getting better....
     
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