How to beat exercise intolerance?

[AngieP]

Hi there,

Both my cardiologist and neurologist would like me to build some muscle especially in my legs, so I'm working with a personal trainer on strength training.

Before I developed POTS I was an avid runner and always enjoyed exercise. However I began noticing that I would have POTS attacks between two to 24 hours after working out. During training I felt fine, but the nausea, tachycardia, chest pain, diarrhea, shakes etc. would hit me afterwards. For some reason these post exercise attacks also often wake me from sleep. I'm not sure if anybody else has experienced this?

Anyway after two years of not training I've finally returned to exercise and I'm experiencing the same problem. So, I guess my questions are:

- What causes exercise intolerance? Why am I experiencing these awful symptoms hours after my workout?

- If I keep going with my exercise plan will these attacks eventually stop as I get fitter?

I'm very determined to get strong as I dropped a lot of weight during my last POTS flare up and felt extremely frail. Any advice anyone can offer about how to cope with exercise intolerance would be much appreciated.

Cheers,

Angie

 

[dancer65]

Hi angie

i teach an older 50 plus exercise class so the aerobic part is pretty easy and within minutes of starting the warm up I always feel hot nauseated then dizzy on a couple of occasions it has gone into full blown attack. embarrassing but my class are really great. My Dr thinks it's due to adrenalin rush, I found just exercising with in a very low range of effort keeps it from being full blown, sometimes I just have to stop and not demonfstrate  DRs have not had any suggestions for me except they all insist I should not give up my job completely so I just keep pushing on doing the best I can for that day and have reduced my teaching hours

i teach ballet most week days and I experience pain and fatigue in my muscles within the hour of finishing , an Epsom bath with massage and use of an infra red lamp helps relieve it a little bit

i recently have started considering an imbalance of minerals or amino acids so I am trying to add more into my diet plus a few supplements , to early to say if this is going to help

start slow, listen to your body, determination can go a long way ?

I hope you can figure this out and good luck to you ! 

 

[TCP]

I would say that in the 32 years of illness that I am exercise intolerant, however, it does depend on the type of exercise. I would not be able to tolerate walking, jogging and higher impact exercise, but can tolerate low impact exercises and it doesn't make me feel awful and in pain. I started with recumbent bike for a few minutes a day and built that up and then incorporated some work on my core muscles. I don't overdo any of it. I work at about an hour a day. Recumbent/supine exercises are a help. 

As I have EDS and neuropathic pain, I have to be careful not to make nerve inflammation worse or overstretch ligaments. Taking it steady is vital. 

[Lily]

I have POTS with blood pooling, so exercise that is slow enough to allow pooling (eg walking, golfing) will provoke symptoms.  Vigorous exercise will not provoke symptoms, so I do weights and push myself at cardio, as if I didn't have POTS.  That seems to work for me.  I was told that consistent exercise, and working to improve duration and resistance level, will eventually pay off in reduced symptoms.  I do not have the delayed reaction you described, though.  That is interesting.  Is the reaction less severe if you do an easy day?

[statesof]

I too am trying to find out a way out of this exercise intolerance, but in the past few years I haven't really been able to make much ground. If my physical exertions are too slow I get symptoms almost immediately, if I dive right into to it then I can keep it up for a short while. Walking, running, and lifting weights are kind of out of the question for me. What I have been doing is some floor leg exercises, yoga starting at 10 minutes and trying to do that everyday for a few weeks then add another minute and continue, balance exercises like standing with one foot in front of the other with my eyes closed and try and hold that for about a minute and I'll maybe do it 8 times. And I've begun doing some flat on my back bicycling in the air with leg weights on but I can only do it for about a minute, and like you I tend to feel worse after my exercise, so usually 20-30 minutes after I feel bad and get continuously worse for a few hours and am just very fragile the rest of the day.

[Lily]

My understanding of the exercise tolerance issue is that you must do what you can, even if only 1 minute, and keep pushing yourself to try to do more.  Even if your progress is extremely slow, progress of any kind will help POTS symptoms to improve.

[Kiki_kristy]

I recently saw a well known arrhythmia specialist and he told me that we will always feel worse before we feel better when it comes to working out. He told me that it will take a while before the intolerance goes away. He said that is why it is so hard on many of us because we feel so much worse at first it is hard to push through. He said if you can push yourself in the long run it will make a huge difference. Your heart rate will slow down and we "should" feel a reduction in overall symptoms. That is for those of us who just have POTS. Swimming I heard was a good option and Pilates. Until you build up muscle, but cardio is key. You need to strengthen your heart. The doctor told me it can take up to 6 months before we feel better. I am struggling myself and trying to get on a more structured plan. It is so easy to give up, which I have many times, because I feel awful after I start working out. Usually later at night like you, I found I cannot work out past 3, if I do I get very symptomatic at night. I read that some places offer a cardiac rehabilitation program, like the mayo clinic. I wonder why they don't offer that to more POTS patients. Hope this helps! 

[yogini]

The biggest thing for me has been to build up to exercising.  Pick a very small amount of time - like 1 minute or 5 minute and see if that triggers your symptoms. If it doesn't do it every day, then increase in small increments.  This really worked for me.  

Another big thing when I did cardio/exercise bike was monitoring my HR.  Even though I can physically ride at a higher level,  I noticed my HR increased too much.  I wanted to keep my HR below 120 so stayed at level 1 on the bike.

Other things that help:  exercising in a seated or lying down position, making sure to warm up and cool down, trying exercise which aren't cardio (like yoga), drinking plenty of water before during and after exercise.

I never checked with a dr but have also worn compression hose while exercising and this has helped to keep my HR down.

[TCP]

I agree it must be very gradual from floor exercises and recumbent bike. No high impact, all low. Need to build up and not overwork the heart. 

[AngieP]

Thank you very much for your advice and encouragement to continue exercising.

I definitely over did it last week and from now on I will take it easier and build up slowly.

 

 

 

 

[Lily]

Now I'm wondering something.  Like I said above, vigorous exercise is not a problem for me, but slow exercise will provoke symptoms.  Am I right in going for vigorous exercise, hitting 70 - 85% MHR in cardio or else weight lifting (heavy weight low rep, or else high rep bodyweight)?  

[Lily]

I just learned something interesting.  Details of results of cardiovascular training include increased blood volume.  

See here: http://www.outsideonline.com/2065496/your-body-sports

[kpflma]

Interesting article! Thank you

[yogini]

Lily, I would continue to go with what  works for you. Many people have exercise intolerance. Going slow was the only thing that didn't trigger my symptoms. I think many people try exercising hard (for example the Levine protocol) and are disappointed when they can't handle it. If exercising hard doesn't work, slowing down can be a good option.  If faster works for you, it might make sense to just  stick with it as long as your dr doesn't object

[TCP]

My cardiologist (area of interest is POTS) says to keep building up and lower leg was the best start and then work on the core as that was vital. I personally have to be careful as I have EDS and neuropathy, plus spine problems, so have to be very cautious and not to do any high impact. My heart beats too fast anyway and any exercise makes my heart go nuts. 

Go with what you can cope with and listen to your body. 

[Lily]

I have been having a hard time getting myself to the gym to lift, but it turns out that high repetition bodyweight exercises make for a challenging workout.  Yesterday in addition to walking around for an hour leading a field trip I did 3 sets of 20 full bodyweight squats and 3 sets of 30 bodyweight calf raises.  Tough enough to "count" in my mind.

I complained to the POTS doctor about the lack of guidance on the internet for POTSies who are either not exercise intolerant or who have worked their way up a lot.  He said that I can just proceed as if I didn't have POTS, so that's my plan.  I am currently working on re-establishing the exercising habit.

[lewis]

When I first started I felt awful during and after any excersize. I always start with a salt pill and a bottle of water. I lift weights and use a row machine so after every set I drink a whole bottle of water. Little by little I've worked myself up to being able to feel good while working out and more actually enjoy it. Also it along with my diet has completely changed how I feel. I am really close to feeling how I felt before all this came on. 

[shan1212]

I did experience the kind of crash you're talking about when I was running longer distances (4-5 miles) a few years ago. Dr. Sica said I was probably pushing myself too much.

It's all so much trial and error. I continue trying to run, but these days I can only do a mile. Then I walk another mile or two. I do workout videos, and I can't really tolerate the ones that are too quick with high intensity interval training. I need longer, slower workouts. I've pulled my old Firm DVDs out and am trying to build muscle mass.

My goal has always been to do what I can. So when I've broken a foot or had a really bad POTS spell, I'll drag the bike trainer out to the basement and do that while I watch tv. I have easier workout DVDs, so on a bad day, I'll just try to do my easiest 25 minute workout with light weights. Another day I can try to do a harder workout that might actually build up endurance and muscle mass, but for the off days, at least I did something to keep me somewhat conditioned. 

[AngieP]

Lewis - it's awesome to hear that your fitness has almost returned to the same level you were at before you developed POTS. It gives me hope. 

Shan1212 - I agree with you. It is a lot of trial and error. After training last week I suffered bouts of terrible chest pain which brought on extreme fatigue - it felt like a heavy blanket had been draped over my head and I struggled to be productive at work.

The chest pain was particularly frightening - it felt like an acute spasm and then my body went into shock (shaking, nausea). The pain lasted much longer than usual and my husband and I contemplated going into the ER but rode it out at home. As mentioned in my earlier post, the attacks occur when my body is in a relaxed state - reading a book in bed etc. The exercise certainly seems to be stirring something up - it feels like my body is rebelling against it.

I returned to training tonight - a very low impact work out and I have my fingers crossed it won't trigger too many nasty symptoms.  I don't want to start fearing exercise because I know it is very beneficial.

Thanks again for sharing your exercise experiences with me!

[Lily]

Would everyone like to have an exercise accountability thread?  We post what we did and congratulate each other?

[AngieP]

Lily - I love this idea. Please count me in 

7 hours ago, Lily said:

Would everyone like to have an exercise accountability thread?  We post what we did and congratulate each other?

 

[Chaos]

Hi! I too have had a real challenge with exercise intolerance which is no end of frustrating since I was always very fit and exercised regularly before becoming ill.  I spent three years and built up to walking 4 miles every day at a pretty fast pace when my POTS neuro kept pushing exercise.  But then I couldn't do anything else for the rest of the day and I would get a ton of migraines and just generally felt terrible.  It also, never got easier or made me feel better.

Then I started reading the research by these folks http://www.workwellfoundation.org/

Specifically this articlehttp://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short

This data has been confirmed with other studies at different locations.

I went out to CA and had them do their 2 day CPET (cardio-pulmonary exercise testing) and found that while I did fine the first day, the second day everything they look at on the test dropped from 20-43%.  I simply could not generate the same effort the second day that I did the first despite trying my hardest.  (And after doing the test I was stuck in bed for 10 days with a ton of symptoms).  I also learned that my anaerobic threshold (the HR at which you switch from aerobic to anaerobic metabolism) was extremely low, meaning that any time my HR went over 96, I went into anaerobic metabolism.  With POTS, my HR was higher than that just by standing up most days. 

So, the idea with exercise now is to do as much as I can do with functional activities but always keep my HR below the anaerobic threshold.  That means no "cardio" type exercises (walking fast, bike riding, swimming) and only very gentle other exercise, preferably supine.  Anything more than that will put me back in bed for several days and cause a huge flare in symptoms. 

Unfortunately, for some of us that have ME/CFS along with POTS, exercise (as most of us thought about it pre-illness) is not a magic bullet and may actually make you worse. That has been really hard to accept as I am a physical therapist and exercise is ALWAYS supposed to help you.  And it still does help me as long as I am super careful about how much I do.  

Hope this gives you some new ideas if you are struggling with never-ending exercise intolerance.

 

 

 

 

 

 

[shan1212]

I would be interested in an exercise accountability thread!

After doing some reading about increasing your VO2max, I have switched up my treadmill time. Previously, I would run as far as I could (0.5 to 1.25 miles) at an 11 min pace, then walk another mile or two. Then I read that endurance training requires at least 30 minutes of exercise 5x per week, so I am making sure I continue on until I hit 30 minutes. And then I started reading about interval training, so this week I have started doing 3x 3 minute "sprints" (increasing my pace to 10:20 min/mile) with 3-4 minutes of walking in between, and then finishing up with wlaking. 

I just continue to throw darts and see what sticks. I do know that sustained running at 11 min/miles does not feel good to me. Walking briskly does feel good, so maybe I should do that more often and worry less about jogging. But then, the interval stuff is OK because it's only for a short time. I suspect that my issues are not due to blood pooling in my extremities or low volume but inefficient pumping. So I figure anything I can do to strengthen my heart will help. I'm also working on losing weight which should also help with VO2 max.

On alternate days, I'm doing 50-60 minute old school "Firm" DVDs with a 14 inch step and weights. These are a good pace for me because they are lower-impact but higher on weights. All these new "work out in 6 minutes!" exercises where you fling yourself about doing burpees and lunges at a high pace make me feel like death. 

I do keep slogging along. It's frustrating because you would think a person exercising as religiously as I am would not struggle with stairs or need to lie down at her child's school event, or be unable to work. But we carry on, doing our best. 

[Lily]

Shan,  I made an exercise accountability thread, but nobody posted.  Check older threads.  It's back there somewhere.

[Hippopotsamus]

I have gotten these delayed reactions after doing lots of physical activity (more frequently after doing lots of housework). I'll be resting and out of the blue HR will zoom up, chest discomfort, anxiety, weird breathing, diarrhea, excessive urination, feeling hot/cold, shaking. Feel bad that my house is such a mess most of the time but I'm afraid to clean! I also have not run on purpose (for exercise sake as opposed to "oh no I'm late for something") since I've developed POTS because I'm scared of what might happen, and I used to love running.