How can I tell if exercise (any physical activity) is helping or hurting?

[MTRJ75]

Over the last year, I've frequently attempted to start minor exercise programs as I've felt well enough, but consistently failed. Even just branching out into more household chores or cleaning brings back the same physical devastation that stopped me from regularly exercising in the first place (before I understood what this condition was). 

Twitching, shaking, tremors, PVCs, numbness, excessive sweating, pins & needles, burning in every muscle, nausea, light dizziness, etc...

I know my back is supposed to hurt and muscles I haven't used much in a long time are supposed to ache, but I don't think all this should still consistently be happening if any of this is actually helping me. 

So the question is, right there in the subject: How can I tell if exercise (or any physical activity for that matter) is helping or hurting me? 

If it's just a matter of going through some stuff and rebuilding, that's fine. I can deal. 

But what if this is caused by nerve or muscle damage or the theory that SFN damage is shunting blood away from the muscles? Could I just be making things worse? 

Maybe in the end, it doesn't even really matter because I still eventually have to do the things that must be done, even if it does kill me, but I'd like to know if possible to avoid screwing myself up more than I have to if it's not going to help in the long run. 

[Pistol]

@MTRJ75 I am not sure about SFN but I do know about how orthostatic ( and exercise ) intolerance can affect us. I am in the same boat - when I have good days then I want to use my energy for chores but also want to exercise. But if I do BOTH then I end up useless for a few days. So here is what I do: I do upright chores spread out over the day, making sure I dont spend too much time standing and rest every 10 minutes or so. And I try to do all the active chores in the morning ( I do best in the am, but many people do better later in the day ). However - to the best of my ability I try to also exercise every day. Good days - a brisk 5 minute walk. Most days - a few reps on the rowing machine. Bad days - supine exercises in bed. This way I can prevent the dreaded deconditioning, provide stimulation for cardio-vascular health and also keep my joints and muscles functional. 

[MikeO]

I agree with @Pistol avoiding the dreaded deconditioning is best.

[Sushi]

I also find that exercising is very important, BUT, I think it is important to do so little that you don’t get symptoms afterward. Even starting with two minutes a day of some simple type of exercise and then building up perhaps a minute a week or whatever you can tolerate, can I help you build up very slowly overtime and strengthen your muscles. It has taken me over six months but now I can do simple exercises for 25 minutes a day. But, if I have to do physical chores that same day I do skip the exercise as it then becomes too much.

[MTRJ75]

That's the problem. The post-active symptoms have never changed. What does the good, this is working type of discomfort feel like as opposed the "this is no good" physical reaction? 

[Pistol]

1 hour ago, MTRJ75 said:

What does the good, this is working type of discomfort feel like as opposed the "this is no good" physical reaction? 

For me - and again, we are all different - it is fatigue as well as overstimulation that alerts me that I overdid things. Example: I need to mop my floors. This requires being upright, so very stressful. In other words a "bad" activity because it takes more energy than it gives back. I will have to do it slowly, with many rest periods in between.

Good results - floors are clean, I am not overwhelmed or fatigued. 

Bad results - I did it too fast, my chest hurts, my heart is jumping around, I am irritable and feel like I just fought off a rabid tiger.  

Example: 20 reps on the rowing machine when I feel rested, relaxed and ready ... feeling good afterwards, and gained energy from the exercise. 

               20 reps on the rowing machine when I already mopped the floors ... feeling drained, overwhelmed, irritable, need to rest for 3 days. 

[MikeO]

On 10/21/2022 at 4:15 PM, MTRJ75 said:

I know my back is supposed to hurt and muscles I haven't used much in a long time are supposed to ache, but I don't think all this should still consistently be happening if any of this is actually helping me. 

So the question is, right there in the subject: How can I tell if exercise (or any physical activity for that matter) is helping or hurting me? 

So how i know my exercising/staying active is working for me is that at one point i could hardly make it out to the mailbox and back without becoming very fatigued or symptomatic. over time i now can at least tolerate 4 hr's or so moving around and getting stuff done before having to get off my feet.

and yes i do ache all over but i would think that is normal for most people after having a hard day it's just my hard day is much shorter than most folks.

I find pacing myself works. if i go into lets get this done quick mode i will have a short day of activities.  

[MTRJ75]

I'm definitely not getting the benefits you guys have described because nothing's changed on an energy level yet. 

@Pistolyour "bad results" do seem a bit like what I end up dealing with just about every time I attempt to do anything sustainably in upright or bent position. 

[MikeO]

6 minutes ago, MTRJ75 said:

I'm definitely not getting the benefits you guys have described because nothing's changed on an energy level yet.

Have you had a endo do any testing as to your metabolism? I get the no energy thing.

[BuddyLove]

Because of Neurally Mediated Hypotension, I had to stop running with my friends when I was twelve, and going to the gym when I was thirty, Even though I didn't know why.

Trying not to be bitter about it is as hard as finding a diet and exercise plan I can stick with. 

Before my tilt table test I had to get a psychologist to write my notes for work, when I told people I was suffering from depression, everybody had a cure for me, and every cure was different. At that point in my life, I laughed at depression, I think I kind of liked it, like a warm fuzzy blanket. 

When my psychiatrist asked me what I wanted after prozac didn't cut it for me, I reflected for a moment, than I blurted out "ENERGY!!"

That's still my greatest regret in life, not having the energy I want and need, I'll never get used to it.

FDR was still trying to walk the last week of his life. 

[MTRJ75]

On 10/23/2022 at 8:31 PM, MikeO said:

Have you had a endo do any testing as to your metabolism? I get the no energy thing.

Not recently. I've always had very fast metabolism before getting sick. Who knows now? But isn't there something inherently wrong with the mitochondria in our conditions? 

[MTRJ75]

8 hours ago, BuddyLove said:

FDR was still trying to walk the last week of his life. 

I can relate. Having been fit for most of my life, I'm down there trying to do pushups whenever I feel like I might be able to. 

[Catbrat]

My pots specialist wants me to exercise, he says the rowing machine will work wonders for pots. My advise is to confer with your specialist for the best recommendation.

[BuddyLove]

I can't offer any suggestion what exercise plan is best for each and every person here, but when I was first diagnosed with Neurally Mediated Hypotension, I went to a lecture with a Doctor who said it wasn't the Neurally Mediated Hypotension that was going to kill me, it's the lying around all day that will do me in. 

 

 

[MTRJ75]

They're all obviously going to say you need to exercise, but they don't really understand what it's doing to each individual person. Neither do I really. 

[MTRJ75]

I've also noticed I've had more trouble sleeping due to bodily jerks on nights of days that I'm more physically active. I'm really hoping this is something that eventually goes away as a benefit of exercise. 

[MikeO]

22 minutes ago, MTRJ75 said:

I've also noticed I've had more trouble sleeping due to bodily jerks on nights of days that I'm more physically active. I'm really hoping this is something that eventually goes away as a benefit of exercise. 

Well if you are advocating not to be active so be it. Like stated lying around has its downfalls. Not sure what your body jerks are about (Meds maybe) but as @BuddyLovementioned being inactive or sedentary is not good. Can't catch the mail truck it is ok but getting your butt moving goes a long way. 

[bizbiz]

I walk, (fast), every morning for 50 minutes. I'm still symptomatic, but will (cautiously) say that I am seeing a very gradual improvement in my POTS symptoms. (This has been my longest flare - over two years - so improvement has been very slow).

I stopped all exercise for seven days after I caught COVID a few months ago, and found that within four or five days my POTS symptoms increased (although this could also have been from the COVID virus). So I started walking again, and apart from some lingering fatigue, my POTS symptoms returned to my baseline (which is to say, still daily, but not as bad as when I wasn't exercising). 

I think I would be worse off for not exercising.

[BuddyLove]

On 10/21/2022 at 5:15 PM, MTRJ75 said:

Over the last year, I've frequently attempted to start minor exercise programs as I've felt well enough, but consistently failed. 

There's psychological side to exercise, I have made the Classic Mistake of raking leaves, and loving the results so much I end up overdoing it and crashing for the next three days. 

There's a psychological side to accepting being disabled for the rest of your life.

The Kobayashi Maru is a training exercise in the Star Trek franchise designed to test the character of Starfleet Academy cadets in a no-win scenario.

That's probably the toughest exercise we all need to master. 

I think if there was a book on the perfect exercise plan for P. O. T. S patients, we would have all put it on our shelves by now.

Over and over I've heard the same lame advice from medical professionals that is unfortunately true-

Be sure to exercise, but don't exercise too much. 

 

 

[MTRJ75]

I'm frustrated. I don't know what to say anymore. I do believe I can and have made my POTS symptoms better with exercise (I think) but it sure feels like there's also something else there that's hindering me. Something potentially more neuropathic or nerve/muscle damage in nature. I probably am doing more than I should when I think I feel well enough for physical activity too because I still somehow think I'm going to eventually get the same results I got before becoming ill. 

[ROsfn]

All of the symptoms you're describing after exercising I had also. In the end, I found out I have severe small fiber neuropathy which often occurs with dysautonomia and autonomic neuropathy. I get the exact same symptoms after doing much of anything. You have to understand SFN to understand the effects on the small nerves and muscles. It is not laziness or just "pushing through" to exercise when you have SFN. The muscles can become starved for oxygen and blood causing more cramps, twitching, deep aching muscles, etc. Mine would last all night into the next day after just running the vacuum. I worked with a peripheral neuropathy PT doctor and started exercises at only 5 minutes twice a day and worked up from there. I can now walk further and a low dose of flexeril twice daily helps me do more without triggering symptoms. A neuromuscular doctor can help do a skin punch biopsy to diagnose you. I learned to rest after doing a little work. Put your feet up and let the blood get back to your muscles. Then you can do a little more again.

[MTRJ75]

So then my neuro would be inccorrect that there is nothing can be done about SFN?