How long do your PEM setbacks last?

[SDSue]

My PEM starts after 4 days also. During this latest episode I have been taking first morning BP and HR per my doctor's instructions. Interestingly, my BP, both systolic and diastolic, increased significantly just as the PEM started. They shot up quite high (for me) and then have slowly decreased, getting back to about normal just as I started to feel (my) normal again.

I wonder if you are having a similar situation. Perhaps you feel better day 3 because your baseline BP is higher then everything crashes. I suppose it could be an adrenaline surge. Sheer speculation, of course.

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]

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.

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

Sushi

 

[SDSue]

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

Sushi

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.

 

[Sushi]

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.

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

 

[SOC]

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.

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.

 

[taniaaust1]

Do you have a crock pot? I use this frequently, it's especially nice in the warmer weather because it does not heat up the kitchen. It's great for making stews and flavour is so nice because it's slow cooked. Just chop everything, throw it in and it'll cook when you nap, you don't have to watch it. I don't have a timer on mine but when I need to replace it I'll get that feature. You have to remember to turn it on though lol I've forgotten that a few times.

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.

 

[taniaaust1]

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

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.

 

[SDSue]

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.

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".

 

[taniaaust1]

My PEM sometimes starts immediately or a week later. Sometimes I can't pinpoint what I did when that happens. I am wondering if anyone just gets severe tiredness and feeling totally drained with PEM. That is all I ever feel as I really never have had pain. I also get the overstimulation feeling inside along with vibrating in my chest area. Also poor sleep as in waking many times.
I have been told in the past that this isn't considered PEM as but if it isn't then I have no clue what happens to me.

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.

 

[taniaaust1]

The crash begins with wired/tired and emotional lability, and progresses to bed-bound quickly. Seems to last 2 or 3 days.
.

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.

 

[taniaaust1]

Now I can't sleep, feel wired and tired, my essential tremor in head and hands is much worse. Too much stimulus causes confusion and nervousness and occasionally have very depressive thoughts. This is payback for doing 3loads of clothes, changing my bed and walking my dog. Damn this disease.

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.

 

[SDSue]

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.

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?

 

[PNR2008]

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]

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.

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]

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;-)

 

[PNR2008]

@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]

@SDSue....I really think a lot of my PEM is because of the adrenalin surging. Then went it quits I quit. I have been trying to figure out for years any way to predict what to do or not to do and haven't been able to yet. There are times when I can do the same activity at different times and crash sometimes and others get through okay.

Mine also begin with the wired/tired feeling inside and then progresses to crazy bad fatigue. I think once I overdue even if I stop ahead of time it is too late and the PEM or crash will occur.

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

 

[jann1033]

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

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.

 

[matters]

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..