Is ?not Being Active Enough? A Trigger For You As Well?????

[carinara]

I was just reading a post that reminded me of a phenomenon i experience a lot but never got around posting about it.

Iam interested in finding out if any of you have experienced not being active enough being a big trigger

that worsens the POTS symptoms.

In during my work week, i stick 100% to a routine that works best for me. I go to bed around 9 and get up at 6. I watch the food i eat and a million more things in order to get through my workday more or less ok.

I always push myself to a point were it doesnt hurt me yet.

Then, when it comes to the weekends and/or holidays ( which iam always looking forward to), i feel

much worse, then i experience that my circulation becomes worse, i feel weaker and dizzier...

( i have been experiencing this for many years now.).

In during the week, i always look so much forward to the weekend because in my mind, iam dreaming

about being able to sleep in and relax more but every weekend i find out, that ist not doing me any good.

I figured out, that my body might function better under some kind of ?tension? because if i get too relaxed it harms me much more then it helps me.

This is something i have experienced for many years now. Even during my real bad POTS Phases in

2000, 2004 and 2007 when i was bedridden for weeks and off work for months, i had the

urge of somehow getting up and doing stuff no matter what.

By the way, when i say getting up and doing stuff, i mean getting up and sitting on my office chair with rolls on and doing things with this chair, very carefull in slow motion ) and not too much.

By being active i dont mean doing sports and excersising,( i used to do marathons and miss it sooooooo much) just everything besides laying down too long.

Its always so hard to find the middle way between doing too much and too less

I would really be interested in finding out, if any of you have experienced this phenomenon as well? And

what your opinions are why this occurs???.

Thank you very much to all of you. I am so thankfull that i have found this wonderfull site with all the wonderfull people in it. My life is so much better with all of you in it

carinara

[persephone]

I find that if I sit for too long, thechange in posture is more startling for my autonomic nervous system. I suppose it's like a micro version of deconditioning.

[Dizzysillyak]

I experience this too. I'm diagnosed with CFS/FM/celiac/OI/Raynaud's/ataxia ... etc etc etc ... I've always felt better if I keep some level of activity in my routine even if it's getting up and putting a load of laundry in the washer. I've been this way as long as I can remember too. When I worked at a desk job before coming down with CFS in 1990, I'd have to get up every hour or so to clear my head. I was very athletic prior to becoming ill too. Mostly racketball and aerobics though ...

It's tough for me to balance this though since I get PEM (post exertional malaise) from overdoing it and wind up crashed on the sofa for 1 - 3 days. And I just mean running errands for a few hours a day.

My guess is that our detox systems aren't working properly. There are actually several theories about this, including the Glutathione Depletion - methylation cycle block but I'm not educated enough to understand these. It's actually very complicated ... This is what is believed to be what is behind CFS and based on my personal experience seems to be right on.

So many of you complain of the same symptoms I have / had in some cases, that it only makes sense to me for you to look at the CFS research too.

Marcia

[potsgirl]

I used to be very active also, and my cardio/neuro pushes me to do as much exercise as possible, even if it's going to work - a lot of us can't even handle that! I've been off work for 2 years now. I do, however, walk 4 times a week, if things are going well. I think it makes my overall health better, and it establishes a routine. In fact, I think that may be part of your problem, too. During the week you're moving more, and have a schedule. How about trying to get on more of a schedule that involves some movement during your weekends, too? It's like sleeping...They say you should keep approximately the same bedtime during the week and during the weekend. It's worth a try!

All my best, let us know how you're doing.

jana

[janiedelite]

Interesting topic. When I'm in a really bad POTS slump, I have to lie quietly for a couple days. But by the third or fourth day, I need to do some kind of activity (like laundry, short walks) or it just gets harder and harder for me to acclimate to being upright the longer I stay in bed. It's like my body tells me to rest for a bit when the POTS fatigue hits, but even though I still feel exhausted I have to get up within a few days and do something or I end up even more tired if I stay in bed. I honestly don't get it.

And there are some days when I'm more active (and not under any stress) and I feel better for days afterward. Other days, I do a bit too much and I'm down for the count.

[bjt22]

I think what you describe is fairly common amongst us. I've often stated that I'm great under stress. We get those catecholimines pumping and there's some semblance of circulation. However, we can't always live in a state of constant motion. No one can live like that and we deserve time to relax as much, and probably more, than other people.

Ofcourse, the more we do, it's often the case that we'll feel worse during our attempts to relax. All about that elusive "balance", isn't it? And finding this is a very individual and personal thing. If I choose to do something one day and I'm totally crashed out the next, well, that was my choice and I live with it. I wouldn't advocate that anyone else make the same choice...maybe I did what I did because it meant something to me, or honestly, because I had no choice. Maybe at this point in my life, I can afford a few days in bed without doing anything. Others obviously can't schedule such down time. That's what makes this so difficult to deal with, and why we are always on the verge of catching flak from those who don't deal with chronic debilitating illness.

[april abbott]

I saw your post on the thread I started a few days ago, so I'm sure you have already counted me in for a response. I will add, this is an interesting topic, because there does seem to be some "in between" area of rest vs activity for many of us. I feel horrible if I'm overactive, and horrible if I'm underactive.

Basically, if I get up(and stay up) early in the morning and keep physically moving and keep my brain stimulated, then I feel much better. I wonder how much the mental stimulation affects this scenario compared to physical stimulation. I know that they both seem to help. I also know that it is more than just the wake/sleep schedule, because even if I keep that in tact on long vacations, I literally feel drugged if I don't get up and out of the house in some way.

It is very strange. Since I have been out of school in late April, I have felt myself decline a great deal. I can only hope that I can find employment soon. The great thing about dental hygiene is that a full work week is usually only four days, so maybe I won't get too overworked.

-April

[ramakentesh]

I experience this to. messing with my sleeping cycle or when i stop pushing myself I always seem to crash. its very strange and I have no idea why other than to say that people with migraines tend to also get them on weekends and holidays.

I went to a wacko doctor that told me it was stress release from the body LOL...

That is why when i was feeling relatively well i used to basically punishg myself with running and swimming, weights etc because it was like my body needed to be constantly physically tired or I would get bad POTS.

Infact, I have found that when i have a late night and an early rise and only a few hours sleep my POTS symptoms are dramatically reduced.

[ramakentesh]

'This is what is believed to be what is behind CFS and based on my personal experience seems to be right on'

Well its one of about 30 theories that are being actively researched. My money is actually on disordered cerebral vascular control without noticable BP disregulation. Time will tell.

methylation has been implicated in POTS - but only as abherant hypermethylation of the norepinephrine transporter which is a common finding in POTS patients when tested.

[toddm1960]

I have to agree with April that there is an "in between area", now enough activity may be just getting up from my desk at lunch time and getting outside. There is no way I could keep a job where I had to be on my feet for even a few hours a day. So it can be a very fine line to getting enough activity, and I have learned to take things easy on weekends or time away from work. Trying to do too much work around the house has been a major source of many of my crashes.

One thing I have noticed with alot of us here, many of us were very active in sports or exercise before becoming sick. It's not unusal at all for active people to feel worse when they can't workout.

[ramakentesh]

if you are sitting in a chair quietly for a few hours you are more likely to precipitate symptoms than moving around a lot, with the obvious exception that standing or manual labour brings it on as well. What can ya do???

At my best I can work around the house all day no prob, but sitting in an office in front of a computer under neon lighting brings it out in about an hour or so.

[Guest elyag]

I try to do a little exercise on good days because I think if I don't do any I'm worse in the long run.. When I first got sick I saw no point in walking for 10 minutes as I was used to walking for an hour when I was healthy. So I wouldn't do anything. Now I realize it's better to do something...anything......than nothing at all.

On the other hand...pushing myself to do more exercise than I can handle, doesn't work either.