Questions about pacing and GET

[Florida Guy]

My bb numbers were bad last night so I did not go for a walk. Otherwise I probably would have. It seems the system is to do as little as possible unless your stats are good then you can schedule some activity. Muscles get flabby if not used so I want to do some walking and bed exercises like leg lifts and so on.

I looked at the perrin page and he seems to think massage of the head and spine will cure cfs and fibro too. My thoughts are thats too simple and if it always worked, we would all be cured. However, he probably has a point in that this might be a factor and people may feel a little better with the right massage but I don't know. Has anyone tried that? I didn't see his guideline but I will keep looking

I've been thinking about having someone come in and take care of the chores like cleaning, laundry and so on. If they could do the shopping that would be nice but I've been doing that myself. I can probably find someone for $20 an hour which is not too bad since you don't need them all the time or every day, just a few hours a week. I've had someone for years take care of the lawn

My pulse was usually over 100 before cfs now its lower but sometimes goes over 100. Also blood pressure is lower now which is supposed to indicate good health but now it means something else? I don't know how the blood pressure varies during the day since the watch doesn't measure it though I do have another device to do it. When my pulse rate and bp were high in the past I used to use a vagus nerve stimulation device and it lowered the numbers. I haven't tried it since cfs. Topic for a different thread.

Thanks for all the tips everyone.

 

[hapl808]

My pulse was usually over 100 before cfs now its lower but sometimes goes over 100. Also blood pressure is lower now which is supposed to indicate good health but now it means something else? I don't know how the blood pressure varies during the day since the watch doesn't measure it though I do hav

I think the blood pressure numbers you posted seemed pretty normal. Huge drops are the problem.

My pulse is also often over 100 while sitting, and my MECFS is moderate-severe. I don't know what my pulse was when I was more mild, but I'm guessing pretty high and I just kept pushing it.

If I do nothing at all for a few days and eat carefully, it'll be in the 80's at rest - and I feel better. If I even work on the computer too much one day, the next day or two will show elevated HR.

Unfortunately I think it's the canary in the coal mine, and not something to ignore. I wish I had a solution for it, though.

 

[Florida Guy]

I think the blood pressure numbers you posted seemed pretty normal. Huge drops are the problem.

What would you call a huge drop? A 20 point drop seems huge but it should not be a problem unless it gets down to maybe 80 over 40 or below. My present levels are supposed to indicate good health but I don't know

My bb actually went up a little just now from 75 to 76. Each morning I seem to have better numbers as I recover from the crash. Surfing the net does not seem to bother me though my numbers drop during the day. Its my main entertainment and its how I'll discover the cure for me. Then I'll come back and share it with everyone

 

[keepswimming]

I looked at the perrin page and he seems to think massage of the head and spine will cure cfs and fibro too. My thoughts are thats too simple and if it always worked, we would all be cured. However, he probably has a point in that this might be a factor and people may feel a little better with the right massage but I don't know. Has anyone tried that? I didn't see his guideline but I will keep looking

I am currently doing the Perrin Technique and for me personally it seems to be helping, I'm starting to see improvement. There has been a recent discussion about it on here, if you search for Perrin Technique you should find it.

 

[hapl808]

blood pressure dropped dramatically from usual 125 over 85 or so to now at rest it might be 103 over 67

Those are both relatively good readings, although verging on high in the first one. Pay attention to how you feel versus your readings, but usually a POTS drop is measured between sitting/lying and standing readings. This sounds more like a general change, not an orthostatic one.

My bb actually went up a little just now from 75 to 76. Each morning I seem to have better numbers as I recover from the crash. Surfing the net does not seem to bother me though my numbers drop during the day. Its my main entertainment and its how I'll discover the cure for me. Then I'll come back and share it with everyone

After a few weeks readings should be more accurate. As I think @Judee mentioned elsewhere, if you take the watch off for more than maybe an hour, the BB reading will be inaccurate for a day or so.

My BB almost never goes up when I'm not sleeping. This morning it was 39 when I got out of bed and had dropped to 30 after an hour of just checking email and watching a couple videos. It'll probably hit 5 by late afternoon with no unusual activity (sitting, making toast, eating, etc).

 

[Florida Guy]

I will for sure look into perrin and see what it does for me. I find that strategic resting helps a lot. I lie down for a half hour or so to do my planning in between sessions doing other things.

After a few weeks readings should be more accurate. As I think @Judee mentioned elsewhere, if you take the watch off for more than maybe an hour, the BB reading will be inaccurate for a day or so.

Its down to 8% charge and it takes close to an hour and a half to recharge. Lately, its been every couple days I have to charge it, that is reason enough to send it back. I may order a new one first so that there isn't a long period in between

Since we get lower blood pressure and pulse rate in many cases, and since that is supposed to be healthier, it might be an advantage that cancels out some of the bad parts. I had slightly high bp for many years so this is better. I also have arrhythmia, it seems many cfs sufferers have some cardiac problems but lower bp should help

 

[hapl808]

Its down to 8% charge and it takes close to an hour and a half to recharge. Lately, its been every couple days I have to charge it, that is reason enough to send it back. I may order a new one first so that there isn't a long period in between

Turn off the overnight oxygen, bluetooth (except when you're downloading), etc. And you can recharge for a shorter period of time - you don't have to wait for it to go to 100% full.

 

[Florida Guy]

I turned off the pulse ox, which is what I think you are talking about? There was a warning about battery life. I haven't been using that anyway and doubt it would be accurate. My battery is on charge now and we will see how that works