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I Really Believe Exercise Is The Most Effective Treatment Currently.


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Do you think there is any other thing that would be as beneficial as jogging? I just hate it so much, and I could not imagine going five miles. I love swimming. Would that work? So happy you feel good!

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I've been doing better this week and feel its due to exercise. I've been using the eliptical for 30 minutes and then doing a lite weight high rep little rest workout. I'm not feeling as good as Jangle but agree with his theory and will try to work my way up to where he is.

Puppylove you can do any form of Cardio. Swimming, bicycling, etc.

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I agree with you jangle and am experiencing the same results. The one thing that i noticed is that getting to a conditioned state took a lot longer than before pots and required many more baby steps when compared to normal exercise progression.

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Hi Jangle,

I'm so happy you posted this! I was inspired by your other post about exercise, and I started my own routine about two days ago. I started with VIGOROUS walking for 20 minutes. It took me quite a long time to recover from my walk, and I felt fatigued all day long. I felt good while I was walking, even when I worked up a sweat and was breathing quite heavily. But, I was really tired all day long. ( I do not wear a monitor to check my HR. I think it makes me obsess about how I am feeling instead of just living.) I had several questions:

1. Do you think this will work or do I need to actually jog or use an elliptical?

2. Will the fatigue improve with time?

3. As far as I know, those who improve with exercise, have to keep it up on a daily basis. I am having a hard time picturing myself as an exercise addict at 80 years old. Is there any evidence that we can actually cure ourselves with this or is it just symptom improvement on a daily basis?

Thanks,

Abby

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Abby, TXPOTS told me she has reduced her exercise intensity since she's gotten better, but she still exercises regularly. I believe a maintenance routine will be required, but after you get used to exercising it basically just becomes a habit like brushing your teeth.

Please ask your doctor if it is appropriate to exercise.

Personally I walked for the time I was sick and in my own personal case all it did was prevent me from getting worse, but certainly didn't improve me. I believe you do have to go into a rigorous form of exercise, might not necessarily have to be jogging, but certainly jogging is the most tried and true method I can think of.

Anaphylaxing, no I did not have a reactive/allergic component to my POTS. I doubt that would be responsive to exercise as that seems more immunologically mediated than cardiovascularly, but the cardiovascular component should respond to exercise.

lemons, that was definitely my experience, pacing is definitely a little bit depressing when we don't see the progress as readily as we used to.

Puppylove, the thing about swimming is that it's done in a recumbant state, whether that is challenging the body orthostatically enough I'm not sure. I was never much of a jogger myself, but your body does get used to it after proper pacing and adjustment. Jogging is a wonderful way to build your venuous return system as well as the larger cardiovascular system and I can't recommend it enough.

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Jangle - very happy for you, but just one question and please don't feel I'm challenging what you're saying.... but if you're on medication and supplements, how do you sort out the effects from those vs. the exercise?

Well it is true I don't know how much the medicines/supplements might be doing, but the reason I feel it is exercise is because I've been on those for months and it wasn't until just recently as I've gradually increased my exercise intensity that I've noticed symptom reductions.

So basically the symptom reductions correlate to the increased exercise.

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Happy for you Jangle!! :) wish I could exercise.....tried that last week and now I have been having one of my worst flares ever even on my meds...thinking exercise just wont work with my mast cell issues right now....so frustrating how exercise works for some but can make others sicker....just dont get it! :(

Bren

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I am so glad it works for you, Jangle -- and I hope it can work for others. I am personally so frustrated with my own attempts at exercise. I know I feel bad because I am deconditioned (I'm not overweight, but am just so weak). I try to do some strengthening exercises every single day, even if it's just some situps and leg lifts (can do those lying down!) at night when I'm a bit better. But my attempts to take walks almost always put me in a tailspin. I suspect there's some mast cell /histamine issues going on, because time and time again I feel so much worse for days afterwards.

Keep us posted.

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That's great! I just signed up at a gym but I'm afraid to go. I lost a lot of muscle being inactive for 3 years and I wanted to tone up but any exercise (even going up and down the stairs for laundry) makes my heart rate shoot up and I get all shaky. I'd love to run but don't think I'd make it to the end of the driveway. :blink:

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For me, vigorous exercise is key. I was on meds for several years which controlled my heart rate, but my blood pressure was low and I felt constantly fatigued and short of breath. I friend of mine teaches Zumba and she came to my house and encouraged me to try to dance some songs. She worked with me for a long time and now I am able to participate in vigorous classes. If I miss exercise I quickly begin to feel bad. It was really difficult to get started and i did crash often i kept working at it and it was well worth it.

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Jangle:

That's exciting news!! My daughter has had POTS since July of 2011 (diagnosed in November 2011) and just started an exercise program. I hope it will work for her as well as it has for you. I am hopeful that since she was diagnosed relatively early on that she will be feeling better soon.

Keep up the good work!!!!

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Well it is true I don't know how much the medicines/supplements might be doing, but the reason I feel it is exercise is because I've been on those for months and it wasn't until just recently as I've gradually increased my exercise intensity that I've noticed symptom reductions.

Ok, I wasn't sure of the timeline on this. I thought exercise came first, then meds. Good for you - you're one tough cookie to have exercised your way through these difficult symptoms!

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Abby, I tried vigorous activity and it did not work for me at first, I had similar symptoms. I have learned that this happens when i overdo it. When I saw Dr. Goodman, he recommended that I do exercise that emphasizes frequency over intensity. We had a specific conversation about this. He suggested i start with 5-10 minutes and work up from there. I said i could walk for 20 minutes and he asked me if i could do it every day---my answer was no, and he smirked. I would guess that the starting point is something that is different for everyone and is something you are going to have to recognize and learn for yourself (what activity upright/walking can you do every day 6 days a week,that is progressive and slightly challenging?) So for me, it was walking for 10 minutes each day. Keep in mind I am also only 26, and found this to be challenging. I used to be a long distance runner--this was harder and more taxing, it also required discipline. EVERY DAY NO EXCEPTIONS. I have also noticed that each day i "take off" i experience what i consider to be accelerated atrophy. In other words, 2 days off and i'm back to where i started, so its important for me to keep going. The exercise had to be easy enough that it didn't knock me down for a couple of days to recover and challenging enough that it felt like I was performing some type of exercise. Dr. G told me the one thing potsies do wrong is jump into too much activity too quickly. This causes us to get overly fatigued and inhibits a conditioning exercise routine and improvement. After all, we want to be feeling better every day, not just one day at a time. This was hard for me. Like i said, I used to be a long distance runner and was expecting my body to be able to improve physically and in the way that it once did and this is not the case. I try to think of myself as a stroke vicitm. Its not like they just up and start talking again. They have to work on it every day, slowly, diligently if they want to see improvement. To anyone doing an exercise routine this is what worked for me.

1. Exercise that is mild enough that it can be done 6 days a week, NO EXCEPTIONS. Something might not get you on day one, but it will on day 3! Take it Easy!

2. Exercise that is challenging enough to be slightly difficult--to me difficult means shortness of breath, tachy etc.

3. I actually have to carefully watch my intensity, i always try to overdo it--this was perhaps the most difficult thing to learn and control. (i think we learn this by trying to get everything done on our "good" days)

4. Slowly progressing exercise. Adding maybe 2-3 minutes each week to the walking routine. I can not overemphasize the importance of slow improvement. Going to fast will overdo it--its one step forward two steps back

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I agrree with Lemons and see Dr. G too. For me, I had to start out with only 2 minutes to start with. Now, I'm up to 10-15 minutes on an eliptical but, doing it 2 times a day. I will increase to more increments - but not longer increments and will increse the intentsity. I find that gives me enough at one time and doing it in segments seems to work better for me.

Issie

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Lemons I got the same advice. I called Dr. G after I tried the workouts that they sent me and I was in so much pain. I called them and they laughed because they asked how much I had done and I had done about 10 minutes of those and about 40 minutes of an exercise DVD that was really hard. I was in so much pain and it took about 3 weeks to come out of it. But they had a good laugh at that. I used to be very athletic up until just 6 years ago and at 42 could do a found off and and and back bend that I could walk out of backwards. Now, I can't hardly get off the couch somedays. But they said just a few minutes a day and they are so right. Hey, we should all meet up when I go down to Phoenix to see Dr. Goodman????? Maybe have a coffee if anyone is up to it. Let me know. I'm easy breezy.

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Naomi- i have not changed my medications for the past 6 months and am experiencing improvement with the exercise. I did not start feeling better until i started exercising.

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Maiysa, issie, don't you just love Janie, Dr. G's nurse. I swear that poor woman. Every time i talk to her something ridiculous is going on!

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It sounds like I am overdoing it then, but at the same time not doing it often enough.

3. I actually have to carefully watch my intensity, i always try to overdo it--this was perhaps the most difficult thing to learn and control. (i think we learn this by trying to get everything done on our "good" days)

I apparently have this issue too. What % of target heart rate does Dr. G recommend starting out at?

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