Run Pots Scared (My Exercise Program)

[jangle]

My body does seem to be responding to exercise, however the response only seems to happen once I hit the 3 mile (30+ minutes of jogging 10 min/mile pace) mark. Technically I started jogging last October, but I stopped in November and resumed in February with pretty much the same level of fitness I had before. So I'm just going to write here what my results thusfar have been and hopefully how others can benefit.

I did about 4 weeks of jogging in October - November. This was before I knew I had POTS, and I didn't really improve much, but my fitness was not anywhere near what it is now and I wasn't running sufficiently enough I suppose. The state of my heart rates in December were 75 bpm supine 125 standing.

Now I've done three weeks of rather vigorous exercise, my supine is about 75 still but my standing is 90. This lasts for about a day and the longer the period goes without jogging the higher my heart rate will creep up. Standing still for five minutes my heart rate will still climb to about 108, which is considerably less than the 125 it would go to after 5 minutes of standing. I'm still undergoing my exercise regiment so I still consider this a work in progress.

-----------------------------

By no means is this scientific but here's what I've done.

First, I don't think walking will help whatsoever, it does not stress the body enough in my observation. I did near daily walking all throughout having POTS and obviously it has had no impact on my symptom severity. When I first started jogging I could reasonably only jog for about 1 minute. I suspect most other people are about at that same level of fitness. But here's what you do:

I think this could only be adopted if it's possible for you to stand. If you're passing out frequently from standing, perhaps the Levine program would work for you.

What I did was established my baseline. "Ok I can jog for 1 minute" then the next day I jogged the 1 minute and I tried to go a little bit further, say 10 seconds longer. Then I would give my body a day break, your body will tell you if you need a break or not. But basically I repeated this process, I kept jogging a little bit further than the previous time's effort. Sometimes I was able to increase my jogging by a total of 20 seconds longer, but then I would have to stay at that level for a few days.

I would recommend jogging outdoors as you get fresh air and the humidity tends to be lower and you can vary your pace easier. Jogging in a forested area is probably best.

In my case my body began to adjust and I found I could lengthen my stride considerably more. I'm jogging at relatively the same pace (~10.5 min/mile) that I did when I started. I didn't want to go too fast as this would make my heart rate go way up. I believe by increasing the amount of time my body is under stress it can hormonally and cardiovascularly make the changes necessary and this can only be done I believe through extended time periods of aerobic exercise.

So basically I am looking to increase the jogging time.

Realistically speaking, the time it takes to get to about 30 minutes of continuous jogging for me was about 6 weeks.

Once I hit 30 minutes of jogging I started spacing workouts to about once every other day, and I let my body walk on the "off" days. That way my leg muscles can regenerate and I can build up my skeletal muscle pump.

Anyways I am feeling better and I expect to start jogging at a 40-50 minute pace in a few weeks. I just wanted to share my results for others that this can work and it can be of great assistance.

Also I have been taking Alpha Lipoic Acid + Vitamin D + Orange Juice + Multi Vitamin B. These supplements might also assist you with energy + POTS symptoms.

Edited February 21, 2012 by MomtoGiuliana
medical advice

[anaphylaxing]

Wow way to go. Good for you. Do you wear a heart rate monitor when you jog? I'm worried my heart will go nuts and my mast cell symptoms will explode but I need to build up from walking. I used to LOVE running and miss it and workouts heaps

Hope you continue to improve.

[ramakentesh]

Well done - I think this is the right direction for symptom reduction.

[roxie]

That's really great!! Do you think your walking in between nov & Feb kept you at least to where you could start jogging?

I'm kindof doing something similar. My exercise physiologist always talks about the secondary muscle pump too.

First for the EDSers, my geneticists told me NO RUNNING or JOGGING no matter how good you feel. You could get the same high from something like spinning or the elliptical (if you can be upright) but anything high impact will speed up deterioration of joints.

From all my tests my phsyio has started me kicking my legs in the bathtub for 5 mins making sure my heart doesn't go much over 130.  It's best to keep it within 10bpm & for me he said 120-130. It helps calm some of the electric signals in the heart.

When I first started the beginning of Dec I couldn't even do. 2  1/2 mins I was so sick & my muscles so weak. I'd have to stop, rest & then kick again, rest, till I accumulated 5 mins.  I started adding 10 seconds, then 15 & 30. Eventually I got to 5 mins all at once. it took me 4-5weeks

At the end of 4 weeks he told me to make two sets of 5. So I do the 5 mins, rest for 5 mins, and built up to another 5.  And that tool a gradual build, too. Still keeping my HR within 120-130

 I  feel like it's hard, some days more than others but I'm doing it!!

He also told me to get up every two hours and see if I can keep my HR in my zone.  I started only being able to do about 1 1/2 mins.  Now I'm almost to 3 mins!  It has only been the past couple of days that I have been getting to 3  mins with a slower HR climb. So I'm becoming hopeful I can work harder on that!

There is a lot of benefits from exercise when it's done correctly and that's where it gets challenging...finding what's right for our bodies! 

I'm not feeling great, everyday is a struggle but I'm doing it,'which is more than i was doing a few months ago and I'm holding steady. That makes me think there's more light down the road

[jangle]

bananas, I'm not sure about jogging if you have EDS, if your joints are at risk I would suggest staying with your doctor's advice and doing safe exercises.

I think when it all comes down to it, it's about making your body have a sustained but gentle heavy breathing that eventually forces your body to adapt physiologically. It could be achieved on a recumbant bike as well, just as long as you're pushing your heart rate up for extended periods of time. And yes, I have to say making the jump from 5 minutes to 10 minutes was probably the most difficult jump for me but you can do it! I'm beginning to think as you are as well - that there is a light at the end of the tunnel.

As for me, I only check my HR exercising when I go on a treadmill. It's something ridiculous like 200-210, so I prefer to jog outside so I can't see it

Also jogging in a forest is sooooo relaxing.

[puppylove]

Do you think walking would be beneficial to start with? I really don't think I could jog. When I walk I feel like I'm jogging with the heavy breathing and heart racing.

[roxie]

Oh yeah, I know, I've never liked running anyways. I said that more for other EDSers that might want to try your program! 

Another thing my physio has me doing and do I ever dread it is...once a week do a different type of cardio & for little   longer w/HR in zone as a test.

For example, he has me kicking my legs in the tub for 2 sets of 5 mins. So once a week he wants me to do a recumbent bike for 15 mins.. If I can. 

The reason is we're trying to condition our bodies and when we only do one exercise all the time our muscle adjust. We need to surprise them every so often. 

Puppylove, see my post above. My exercise physiologist wouldn't dare have me jogging. I think Jangles point is geared more towards cardio & challenging our bodies to a level we become conditioned & better able to sustain activity. Not the jogging is the other way. We have to do what right for our body. If you can walk that's fabulous! Walk!! If you struggle to walk something like the recumbent bike or tub kicks may be a better starting point

[HopeSprings]

That's great! Obviously you're doing something right. Do I understand you correctly... you started at 1 minute of jogging and worked up to 30 minutes in only 3 weeks or was it 6? What do you think about an exercise bike (a regular, upright seated one) - as good as jogging? I've started to ride it, but am having trouble being consistent.

[HopeSprings]

Can some explain target heartrate to me. I never understood this. You have to keep your heartrate at a certain number the entire time you're exercising? How do you find that number?

[jangle]

Naomi I started out with being able to jog 1 minute. I progressed slowly over 4.5 weeks then I stopped for two months (just did walking etc.) and started back up again at the beginning of February. My fitness was about the same when I started again as when I stopped so I consider it a continuous 6 week endeavor.

Puppylove, I believe that as long as you're getting gently out of breath you should continue with that exercise until you feel more comfortable. But to be honest with you I walked for the past 6 years that I had this (I would walk somewhere around 4 miles a day) and it didn't help my symptoms at all. In fact when I started jogging my symptoms didn't really change either. It's not until I got to this fitness that I'm noticing a change in my symptoms as well as heart rate.

In my experience you don't want to overdo it, there's no need to rush and a lot of what helps is just being able to have the sense of control.

Edited February 21, 2012 by MomtoGiuliana
medical advice

[jackiemxoxo]

That is awesome that your standing heart rate is lower. I have been doing the stationary bike which I felt has built up my endurance but I hope to eventually jog like you can.

[roxie]

Heart rate training is keeping your HR in specific zones for the activity your trying to accomplish according to it's intensity.

My exercise phsyio uses it in POTS because just as the brain sends signals to the heart. The heart sends just as many signals to the brain .  In a lot of POTS patients those signal can be extremely erratic (any surprise,lol?!) and by keeping your heart in your target zone  it can help to calm some of those signals. 

It's not easy at first though. Over time you learn to adjust how hard you are pushing to get your hr in the zones.

There are HR zone charts online as well the formula to figure them  out with your age etc.

In POTS you should start out at 40-50% of your max

http://www.sheerbalance.com/exercise-resources/heart-rate-zone-chart/

[MomtoGiuliana]

I would just like to add that my husband is an avid runner (runs 8 miles a day 5 days a week). He has learned the importance of good form for avoiding injury and improving efficiency.

In my opinion, it's important to learn about form if there is a goal to increase distance and time running, to avoid injuries.

Here is one site with information that my husband uses.

http://naturalrunningcenter.com/

I don't think DINET is the place to get into too much of this discussion, but I just wanted to mention this issue since a lot of people do end up with injuries from improper form.

I'll also add that I think fast walking (3-4 miles/hr) has benefitted me/improved my POTS symptoms.

[comfortzone]

With OI and EDS and fake hips and knees - I've been told to exercise daily rather than longer periods 3 times a week. My attempts at strength training have 100% backfired everytime I try this on my own. So on my 4th year of symptoms I am only to allow PT to help me with strength training....

So I leisurely did the eliptical --- in fact it's so comfortable and slow that I feel like it could never help me - yet this is exactly what I have to overcome - my need to push the envelope for benefit --- when my body simply needs to be worked gently daily for health.

I don't get to a good pace till at least 10 minutes into the session - then the next amount of time I alternate pushing for speed to just moderate - and then eventually cool down - and I'm done.

I have alternated between rowing, treadmill, eliptical and the recumbent bike - and I think the eliptical gives the most bang for the buck with the least damage and pain. Rowing bothered my spine issues - the bike is just flat out boring and your arms don't do anything - treadmill feels harsh on the joints - so that's how I favor the eliptical...

Anyway I think I FINALLY understand that the doctors and therapists are 100% correct in their assessment of what is best for me --- and even though I have a bad habit of berating myself for such "weakling, wimpy" workouts .... if I stick to this everyday? That is exactly what I need for health and there is nothing wrong with me not measuring up to the rest of the world... at least I am moving... and if I'm doing strength work - there's never a therapist more than a few feet away as I try again to build up a way to do this safely down the road without being 'babysat' during the workout...

So for me - slow and easy really truly does it!

[ramakentesh]

Normally id say walking doesnt cut it, but where i live the roads are all on 45 degree angles...

[MomtoGiuliana]

I think it depends on the speed of walking--and inclines too as you say. 3-4 mph can get the heart rate up. Running is not an option for everyone.

[roxie]

Nowwhat, I was just diagnosed with EDS & those are the kind of things the geneticist talked to me about. Everyday & moderate is best.

He told me water exercise is really the best, if you hadn't tried that yet. The bummer with a pool is that's kinda incomvienant. Also pilates & tai chi were mentioned

[peregrine]

I'm a walker myself - the doctor says I should try swimming too and I need to get around to that. But I'm one of the 3-4mph walkers (along with MomtoGiuliana, I see) and it certainly gets my heart racing up nicely - and got both it and my lungs in shape just fine pre-dysautonomia. (I can't run myself, due to joint issues, but in some ways I think fast walking is almost better, and it's certainly easier on the joints!)

[Chaos]

I'm in the walking crowd too. On a good day I am back up to walking a 14 minute mile, on a not so good day it's about 16 and a half minute mile so that's a pretty good rate I think. Can't run with the EDS/ joint/back issues I have. I'm also in the "there's no way but up" crowd as everywhere near my house where I walk has hills.

[anaphylaxing]

I have joint hypermobility and used to jog lots but it never felt super easy. I'd still like to get back into it as so few things kept me in shape as well as that

but since being sick it's walking and a peddle bike so far but I am hoping to build up!

[E246]

Good post

The doc said not to let my hr go over 120 and it put me off. Feel inspired to start again. Chest pain just got worse over the year and if it is vasoconstriction then exercise should help.

[roxie]

Emma, I was told not to go over 130. It is possible! I kick my legs in the bathtub or use a little peddler, wear a heart rate strap and eventually you get the feel of it. Its a great place to start & more of a workout then you realize

[jangle]

Y'alls doctors are a lot more conservative than mine.

I basically told my doctor I don't feel out of breath or tired even when my heart rate is 210. So he gave me the green light.

[roxie]

My exercise guy didn't tell me that from a being winded but stressing my body too much. And so I can sustain it longer time & on a regular basis which will give me the ability to strengthen & gain endurance. I'm sure the longer I work with him the max HR will increase. He's already scheduled my next metabolic stress to "check up" blech.

He actually told me in us POTSY's we don't realize how high our hearts and most of the time when we over do things we don't realize it till later. How true is that?! Everytime I've tried to tell someone that they look at me like a im a loon. My phsyio really does it

It's also possible if you have a more idiopathic form that your body is more receptive in some ways. After I got done with my autonomic tests a few months ago he said he felt strongly my cause was EDS and if it wasn't my POTS was idiopathic. He then told me that depending on which type I have would depend on how exercise is approached. Make sense?

[jangle]

I always wondered if there was a tailored version of exercises for POTS. I guess there's always the Levine program, but we're all so different. For me I don't really get fatigued after exercise.