Ran 3 Miles Today~

[ramakentesh]

So why do I keep relapsing? Why is it that I still struggle through the day sitting at my desk at work, yet can now clean the house and kick the football without problems.

I think that exercise has made me look fitter, has totally reduced my exercise intolerance but it hasnt stopped me getting a POTS relapse once a month and waking up feeling like ive been hit by a bus. I dont crash after exercise so I guess in that regard ive improved. I feel stronger too.

My exercise regime is a run every day - between 1 km and 3km - and I ran 3 mile today! I do 30 pushups ever second day, and 40 situps every second day. This started as a small 30 foot jog and built from there slowly. I kept it up irrespective of whether i had malaise the next day or not - i just stuck with it.

Ultimately I guess my point is that exercise itself does not seem to cure POTS or even protect against relapse in my experience, it just makes your body adjust to handle exercise.

[TXPOTS]

So why do I keep relapsing? Why is it that I still struggle through the day sitting at my desk at work, yet can now clean the house and kick the football without problems.

I think that exercise has made me look fitter, has totally reduced my exercise intolerance but it hasnt stopped me getting a POTS relapse once a month and waking up feeling like ive been hit by a bus. I dont crash after exercise so I guess in that regard ive improved. I feel stronger too.

My exercise regime is a run every day - between 1 km and 3km - and I ran 3 mile today! I do 30 pushups ever second day, and 40 situps every second day. This started as a small 30 foot jog and built from there slowly. I kept it up irrespective of whether i had malaise the next day or not - i just stuck with it.

Ultimately I guess my point is that exercise itself does not seem to cure POTS or even protect against relapse in my experience, it just makes your body adjust to handle exercise.

I'm with you. I run 5 miles every day and ride my recumbent for an hour. I know this seems excessive, but I was very physically active when POTS hit. It is part of my self identity. Plus, the only time I feel good is when I am running. The movement almost eliminates symptoms. I am horribly symptomatic otherwise. I can not sit without leaning back or stand for long without the POTS symptoms. I am homebound, aside from my jogging jaunts. I agree with your point. Exercise certainly helps, and if possible, we should avoid a deconditioned state.

[MomtoGiuliana]

I'm impressed. I walk (20 min mile) but have never been able to run, much, since first getting sick.

Maybe I should just push through it--I get odd chest sensations when I run that un-nerve me.

[peppermint patty]

I am sooo impressed! I am lucky to walk around the block on a good day. If you

don't mind me asking how old are you guys? I have been out of work since Jan. and

I really wasn't one for exercise to begin with, but I wish i could do a smidgen of it.

You have given me motivation...thank you.

[mkoven]

It's hard to tell what's causing what, but I do know that when I'm doing better and being able to exercise go together. I did cardiac rehab, and it helped. At my worst, exercise made my bp drop, gave me chest pain, etc. I don't think pushing through it would have been a good idea. I had to find ways to gradually increase my intensity and duration. For me that meant timing meds, being hydrated, compression, and finding which exercises would trigger me less. For me, it was walking on an incline. Biking made my bp drop. It helped to be supervised, so that I would feel safe. But I also freaked out the workers at cardiac rehab, as they'd never seen anyone like me. I keep at it, now doing about 30 minutes on the treadmill per day, between 3-4.5 mph. I'm also on meds, wear compression, and a neck brace. In my case, I think cranial instability has played a big role in my symptoms. (knock on wood) my symptoms are so much better since I started wearing a neck brace. (Thank you to my fab geneticist for looking into this. The cardiologists and endocrinologists who'd treated me before did not look beyond their own specialties to find the cause. I think for a lot of edsers there may be a problem with the cranial-cervical junction that contributes to POTS. )

[firewatcher]

I'm thrilled, for you.....

I have never (NEVER) even been able to run one mile, my HR just goes to high. There isn't sufficient O2 turnover when my heart beats more than 3 times a second. Even on the BB, my HR goes to 180 depending on the exercise. I usually hit 140bpm just walking. I too have been working out regularly for 18 months, and other than better fitting clothes, I can't feel much improvement. I still have the same orthostatic numbers doing a poor-man's tilt that I did before I started. I don't know how you push through at all.....one day of Pilates and I am almost too sore and tired to move for 3-4 days after. I tried to up it to twice a week and turned into an anguished zombie!

[dsdmom]

I'd have to say I agree with you. When I first got sick I pushed myself through physical therapy and was eventually able to do quite a bit of activity - but it only helped me cope. There was no cure involved and if I took time off I very very quickly slid back to being sicker. Over time my CFS got worse and now pushing through is not an option - interestingly enough I just saw one of the top CFS docs in the country and had a battery of immune function tests done. My immune system is severely dysfunctional - almost scarily so - and so now I know that pushing through would indeed only make me sicker.

But I think if you can do any activity it may help you feel better - I just don't think it is a cure.

[toddm1960]

This is still a touchy subject, so much of the medical community still thinks all you have to do is push through this and you'll be fine. I was told so many times just make yourself excercise, you're being lazy, you want to be sick. We've all heard the lines from one doctor or another.

I still have wet dreams about being able to exercise again someday, and I still don't give in but anymore being on my feet long to help make dinner is a major achievement.

It's nice to hear that others are feeling better even if for a short time because they can exercise, one step at a time.

[TXPOTS]

I also thinks it's a misconception that because you can exercise your POTS is not that bad. I can run, but I can not make dinner for my family or sit up at a desk. I use a lap top in a recliner. The standing kills me, but I am better when moving, the faster the better. Forget accompanying my families to restaurants, getting my hair cut, etc..., The movement or increase in heart rate must get more blood to my brain.

[yogini]

That is great that you can run three miles. I found that exercising has held me to feel much, much better overall. I don't think it can "cure" POTS or stop a relapse, though it may make things less severe.

Rama, how high does your HR go when you run? I too have trouble running - actually, I never really liked running but I assume I would have trouble running. I built up times swimming, biking, even on the elliptical, but each time I take a break from it I have to start from scratch 2 or 5 mins at a time. I get headaches, etc. and my heart rate does not calm down - I have to wear compression hose during exercise and sometimes even have to take a BB after. In general, I think my body isn't geared for cardio. I do better with yoga, which has a more relaxing/calming effect.

[Aquadiva]

It may sound weird, but I am SO glad that you guys can exercise and still have POTS symptoms. Not that I wish it on my worst enemy, but my daughter is the same way. There was a time when she could hardly get out of bed, but now she can play volleyball for a while and do quite well. She suffers TERRIBLE fatigue for a couple days afterward, but for her it is worth it. She too, seems to do better moving than just sitting or standing. But, her stamina wears out and she is a limp noodle by the days end. She is in no way out of shape. I guess what I really mean to say is that you guys can relate and understand that because like one of you said, you can barely stand to make dinner, but can run. I honestly believe that there aren't many people that can REALLY understand that.

I was in fact, kind of leary to post my question about metoprolol and that she was actually playing volleyball. I know so many would LOVE to be able to do something that involves that kind of activity but are limited by POTS (she was also before) and was afraid you might think she is being a whiner if she can play volleyball and that her POTS isn't that bad. But, her biggest complaint right now is lack of concentration and dizziness. She says she can fight the fatigue, which is bad, but the concentration and dizziness are a different beast.

I have to wonder if it is the surge of epi and norepi that many POTS people experience. Maybe it feels better to "wear" some of that off by moving around rather than have it all built up in the bloodstream?? Like having a jittery nervous feeling and it feels better to run or exercise. Just trying to make sense out of something that seems to not make sense.

[nunntrio]

I also thinks it's a misconception that because you can exercise your POTS is not that bad. I can run, but I can not make dinner for my family or sit up at a desk. I use a lap top in a recliner. The standing kills me, but I am better when moving, the faster the better. Forget accompanying my families to restaurants, getting my hair cut, etc..., The movement or increase in heart rate must get more blood to my brain.

It is interesting to me how differently this condition effects people. Running is out of the question for me but I can manage to stand long enough to function somewhat normally(cook shop with conpression hose on etc). Do not get me wrong I usually feel awful doing these activities but at least I can manage.

I do exercise on a recumbant bike at fairly high intensity and have found no improvemet in POTS symptoms.

[ramakentesh]

Some doctors believe POTS is deconditioning and claim that exercise alone 'cures' POTS - hence my thread. Id kill those doctors in a long distance run right now, but im still dizzy, jittery and cant handle sitting at work all day without feeling like im gonna faint at any moment half the time - i dont even feel like i have more energy.

Exercise has strengthened my legs and allowed me to tolerate more exercise - thats probably it after this long.

I think time is the only thing that cures the overstimulated feeling and the other stuff - but im just guessing.

[janiedelite]

I'm with you, Rama. I've hardly been able to lay down at all for the last month for two reasons: I've been having bad back pain which gets worse with sitting or lying down, and we started fostering an active toddler 5 weeks ago. I still have fluctuations in my fatigue, pain, and digestive issues irregardless of the fact that I'm on my feet most of the day now. Most days I tell my husband at least once most days that "I feel so sick," but I don't have the luxury anymore of lying down whenever I want. If it's not the new kiddo who needs watching 24/7, it's the pain from my back problems that's prodding me to keep moving . At least I have the cutest kid in the world to make me smile even when I feel badly.

So I agree that for most of us who've had POTS for awhile, increasing our activity and strength might help a little but doesn't usually cure the underlying cause of the POTS. And often too much activity will exacerbate our symptoms as well.

[Birdlady]

Before I got POTS, I was also fairly active. I wasn't much of a runner though, but I did a lot of bike riding! If there's a type of POTS caused by deconditioning, then I don't have that type because I think I was fairly fit. Of course looking at me now I probably am deconditioned because I feel so awful when I start to exercise. My heart rate shoots up immediately (160+) and once I get overheated, I have to quit or I'll collapse. I still go for walks though as often as the weather allows me.

Part of me thinks that OVERexcercising is why I'm here. I don't think any doctors are talking about that possibility though. From what I've read on this board a lot of us were working graveyard shifts and/or burning the candle at both ends before we came down with an illness/virus and then ultimately got POTS afterward. I think that's what needs researched rather than the deconditioned theory.

[Chaos]

Part of me thinks that OVERexcercising is why I'm here. I don't think any doctors are talking about that possibility though. From what I've read on this board a lot of us were working graveyard shifts and/or burning the candle at both ends before we came down with an illness/virus and then ultimately got POTS afterward. I think that's what needs researched rather than the deconditioned theory.

It certainly seems that "burning the candle at both ends" seems to describe a lot of us here.

When I had my TTT, the nurse kept saying how I must be in such great shape because my body "compensates A LOT for so much". (This after 6 months of barely being able to walk thru my house.)

I have seen patients who I think do have this from deconditioning but that's when they've spent 2 months in ICU on a ventilator. They really ARE deconditioned. And I've seen patients who had that situation and DIDN'T develop POTS symptoms. I've not spent an entire day in bed even when I had 101 fever. (We had "the evils of bedrest" drilled into our heads too thoroughly in school. )

Congrats Rama on being able to run 3 miles! I was able to finally walk my 4 mile route last night but have certainly been paying for it today. Oh well, at least my migraine didn't get worse.

[ramakentesh]

Yeah the burning at both ends seems to describe a lot of POTS patients. My doc said that he had noticed that POTS, CFS and Migraine patients all have similar personalities that seem to attract overcommittment.

[MomtoGiuliana]

I guess what I have heard is that deconditioning can make POTS worse (or can cause OI). since drs are aware it can cause OI they may assume it is the only or primary cause. Of course I have also read that strengthening the lower body and abdomen helps reduce blood pooling. Obviously that can only do so much. I am interested tho in the POTS patients who do not have exercise intolerance, yet have other symptoms. B.c I have had marked exercise intolerance since development of POTS. It is not as bad as it was, and when I am not in a major episode I can excercise, but I don't think I will ever be able to run 3 miles (although I don't like to say never!).

Interesting about the personality--b/c I am also someone who likes to overcommit myself, in whatever I am doing. Very bad trait! (in some ways...)

[Birdlady]

I guess what I have heard is that deconditioning can make POTS worse (or can cause OI). since drs are aware it can cause OI they may assume it is the only or primary cause. Of course I have also read that strengthening the lower body and abdomen helps reduce blood pooling. Obviously that can only do so much. I am interested tho in the POTS patients who do not have exercise intolerance, yet have other symptoms. B.c I have had marked exercise intolerance since development of POTS. It is not as bad as it was, and when I am not in a major episode I can excercise, but I don't think I will ever be able to run 3 miles (although I don't like to say never!).

Interesting about the personality--b/c I am also someone who likes to overcommit myself, in whatever I am doing. Very bad trait! (in some ways...)

The problem I have with this deconditioned theory is how many of us have gone undiagnosed for 5+ years or even 10+ years. After 10 years of being exercise intolerant, of course we are deconditioned. It comes down to what came first? For me, it was definitely the POTS. My first run in with the heat/exercise intolerance was when I was going into my Junior year of high school. I had to suffer through band camp in 90 degree heat and thought I was going to die. No one else (that I could see) was suffering like me and I knew that obviously something was wrong. How is only one 16 year old out of a large marching band of 300 deconditioned? I certainly was not fat and there were many overweight people in this band that likely were more deconditioned than me and they were fine. I was quite active before this, riding my mountain bike any chance I could get, doing Tae Bo etc. Fast forward 10 years of suffering needlessly and yes my body is a little bit more flabby than it used to be but I am still a good weight.

If CC tries to tell me that deconditioning is the cause of my POTS, I'm probably going to scream at the doctor.

[MomtoGiuliana]

Just to clarify. I was just saying that I understand where dr's get the idea that deconditioning is the problem. I think it is very well established now by research that deconditioning is not the cause of POTS in most cases.

[Notgivinup]

Count me in as someone who was definitely NOT deconditioned.

Before POTS, I was happily running after my two year old, and before getting pregnant I was constantly on the go. Outside working in the yard, hiking, biking etc.

I would also scream if a doctor tried to tell me my POTS was because of deconditioning!

[Birdlady]

Just to clarify. I was just saying that I understand where dr's get the idea that deconditioning is the problem. I think it is very well established now by research that deconditioning is not the cause of POTS in most cases.

I'm sorry I didn't really mean for that whole post to be directed at you!!! Just venting!!!

[MomtoGiuliana]

Oh I totally understand the venting!

[Rachel]

Thanks for starting this thread. It is important to note that for most of us POTS is certainly not due to deconditioning. I have only ever known of two people who had POTS or NCS because of deconditioning.

If POTS were due to deconditioning I never would have gotten sick in the first place. I used to swim 3 miles a day, 5 days a week. Looking back I can see that I had symptoms even as a young child. The exercise intolerance just didn't start until later. There were times in middle school and high school that it was hard to keep up in swim practice. The exercise that I had been doing certainly did not protect me from a relapse.

Later on in college when my dysautonomia had gotten worse I sometimes had a hard time sitting through an entire class. It wore me out. I'd be weak, tired, and faint. I could, however, go hiking or do other activities. As long as I was moving I was okay. Today I have exercise intolerance. I can exercise very little, and I always pay for it for 1-5 days.

I do think that our symptoms can get worse if we are deconditioned. When I had to be on bed rest for a week during my pregnancy I was amazed at how deconditioned I became in just that one week. It took me two weeks to get back to baseline.

Rachel

[TXPOTS]

I am trying something new and adding rowing and weight training to my regimen. We joined a gym today. Boy, despite being able to run so far and do my recumbent bike for so long at home, I was astounded by how weak I really am. I have no upper body or abdominal strength. Excuse my former posts about not being deconditioned. I completely proved myself wrong today.