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How long do your PEM setbacks last?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Aerose91, Nov 3, 2013.

  1. SDSue

    SDSue Florida

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    Interesting. I've learned so much since I started wearing a HR monitor continually. Looks like it's time to do the same with BP - I've relied on a wrist monitor which is horribly inconsistent.

    You may be on to something. My heart rate was nice and slow right before my crash - which would normally correspond to increased BP for me. (I recenlty added proper electrolytes all day long; was doing only salt. Maybe that crashed me?)

    So......... what to do about it. The million dollar question.
    Sushi likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My HR and BP increase when I am more ill. The electrolytes should help with blood volume, so that could indeed help.

    Sushi
    SDSue likes this.
  3. SDSue

    SDSue Florida

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    We discussed beta blockers at my last (first) visit, but won't do a trial until all labs and 2 day CPET come back. Prior to falling ill, my resting HR was never over 50. Now it's around 75. On a really good day it's mid 60's.

    Did you ever try a beta blocker? Might be a good choice for me because it's renal-protective.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    No, I never tried one as both BP and HR are too low and also my autonomic specialist didn't think I was a good candidate for one for other reasons (which I have forgotten!).

    Sushi
  5. SOC

    SOC Moderator and Senior Member

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    I can't take beta blockers because I sometimes use an albuterol inhaler. Beta blockers block the effect of albuterol so it's not a good idea to take them if you need the inhaler (or so I was told). I was given a calcium channel blocker instead.

    It did nothing for me until I got Florinef as well. Then it did bring my HR down and I was more functional. Definitely worth it. But my resting HR pre-meds was much higher than yours -- around 95bpm.
  6. taniaaust1

    taniaaust1 Senior Member

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    No I dont have one of those but it is on the huge list of things I really do need. I will get one one day. Haha about forgetting to turn things on, Ive done a few times with roasts and forgot to turn on the oven and go to check it when I think it should be almost cooked.
    Mij likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    My specialist is against beta blockers for his ME/CFS patients too.. he says they rarely help. Thou I do know a few here who have had help by them.
  8. SDSue

    SDSue Florida

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    It's all so very individual. HR, BP, etc are a lot like temp. To assign "normal" to the entire population is nuts. My resting HR is almost 30 beats higher than my norm, yet it looks awfully "normal".
    SOC likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    I personally prefer the term "PENE" over PEM as I think PENE better explains it and we all have different symptoms flare up during these incidences, which may depend on each individuals dominate ME/CFS symptoms.. thes can also differ at different times. I can get classical kind of PEM..but at other times it is nothing like that but more PENE.

    Post excertional kick back can manifest with sleep issues, severe tiredness and over stimulation feeling going on.. and you are right. PEM isnt a good term for that.
  10. taniaaust1

    taniaaust1 Senior Member

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    I can get a lot of emotional lability too when I start crashing.. its like thats another of my warning signs to STOP!! Others around me dont seem to understand this well and think Im going into anxiety.
    ahimsa and SDSue like this.
  11. taniaaust1

    taniaaust1 Senior Member

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    I wont do all my washing at once unless I do nothing else that day, or more commonly I only do 1 load at a time on my less busier days.

    Unfortunately doing just the one load on a day isnt working well for me as I forget Im doing washing and it then ends up being left in the machine and goes smelly and I usually have to end up washing it again then on another day.
  12. SDSue

    SDSue Florida

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    My lability coincides with a horrid inflammation feeling in my brain - ears ring and buzz, I can hear and feel my pulse, I get confused, bad headache and neck-ache, etc. It's definitely not anxiety, but I can understand why it appears that way to others.

    If I had a dollar for every time someone told me I was "just anxious".............

    What is PENE?
  13. PNR2008

    PNR2008 Senior Member

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    I don't have many signs that I've overdone or that a crash is on it's way. For years I'd try some task then if I felt better, I'd do something else and if I got a little adrenlin going I'd continue. So I have paid badly for feeling confident and of course that confidence became eroded, which greatly affected my life.

    Now that I'm getting the POTS under control the signs are easier and I don't feel so weak. One thing I do when I've gone over the edge is curse like a sailor. My family didn't get that at all that it was a serious sign of illness for me which isn't that surprising for them.

    My mother would get horribly irate before she got seriously ill and take it out on others especially finding fault with others. That's something I won't do so this illness presented itself with my dirty mouth. Oh well who can be in control and an angel all the time. LOL.
    SDSue likes this.
  14. SDSue

    SDSue Florida

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    So good to hear your POTS is getting under control. I'm just now starting to fight that battle. Any good tips?

    I, too, curse when I'm headed down. I think I get overwhelmed with fear that it isn't PEM but a permanent worsening of my situation. One more slip down and I won't be able to live alone.

    Ahoy Matey!
    jann1033 likes this.
  15. jann1033

    jann1033 Senior Member

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    I think the fear is one of the worst. There's always that voice in your head telling you this time your legs/speech/memory of your phone number isn't coming back.
    Usually my hands hurt first off, guess that at least protects the ears of anyone in earshot;-)
    SDSue likes this.
  16. PNR2008

    PNR2008 Senior Member

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    @SD Sue, Midodrine works to raise my BP and the difference is great but it took me 3-4 months to get up to 3 a day. Florinef did not help. Tomorrow I'm going for a tilt table test, hoping it's over soon - I have fainted twice 7-9 minutes and that just usurps my energy on previous tests. Luckily I'll be to tired to swear.
    SDSue likes this.
  17. SDSue

    SDSue Florida

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    I'm wondering if anyone has tried zinc in these instances. Doesn't zinc reduce cortisol? Maybe if used pre-crash, it could help?

    I may try it next time. Cause I'm pretty sure there will be a next time:nervous:
  18. jann1033

    jann1033 Senior Member

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    Personally I don't think I ever have too much cortisone since the one thing (med wise) that makes me feel decent is my triannual cortisone arthritis shot. Plus I rarely gets colds/infections etc which I know happens with high cortisone, why you can't take it before surgeries. One more oddity.
    SDSue likes this.
  19. matters

    matters

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    have you tried nasal glutathione? Seems to clear up my brain pretty good when I stay on it.Also experimenting with a nasal light.Not sure yet what I think about it. But was sleeping better, might be cuz I was crashing fatiguewise at the same time.. Hoping i'm detoxing and not entering this frightening phase you are all experiencing, my prayers go out to everybody here..

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