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Exercise Aftermath


Exercise Aftermath  

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I've worked really hard to build up strength through exercise. When POTS first hit me, I went from being very active, working out almost every day, walking several miles 3 times a week, doing yoga, etc. to being unable to do 10 mins on the recumbent bike without becoming symptomatic and being wrecked the rest of the day.

I remember at my first cardiac stress test, the dr said to me "the only reason you are still functioning is because you were so fit when you got sick...every step you take is a step away from a wheelchair" and that really stuck with me. About 6 months post-diagnosis, I started an exercise plan, which was 10 mins per day recumbent bike. Each week I added 3 minutes, until I reached 45. Then I would do 40 minutes recumbent, 5 minutes upright, until I could do 45 minutes upright cardio.

At this point, cardio is so boring! So I do 20-30 minutes a day (unless I'm hiking, in which case I will go much longer) and do some weights and yoga as well. I feel like I'm technically quite fit.

Exercise has helped me be physically stronger, and has increased my endurance. It has helped with confidence and definitely is a fantastic stress reliever for me. Exercise has not helped with my blood pressure or heart rates, or symptoms overall, other than I can perhaps the help of being stronger. I am pretty "high functioning" for POTS, able to go to school full time (but not work as well) and I can walk around and all that. Compared to "normal" people, especially my fit yogi friends, I'm not even close though. I notice that since POTS, my balance and breathing is really off, whereas before that was something I liked about yoga, now I struggle with those parts.

I think part of the benefit is also the empowering feeling of "doing something about pots". Similarly to eating really healthy, taking my herbal medicine and vitamins and getting acupuncture, I feel like it's part of my regimen (at this point I haven't found a medication I can tolerate).

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  • 9 months later...

I am definitely stuck in the catch 22 cycle with exercise. Skip it and symptoms get worse and I become more deconditioned or do it and feel totally wiped. I now believe I must force myself or it will be a downward spiral.

Interesting enough walking and light cardio is okay for me now. Anything with weights, body weight, squats, etc sets my heart rate into over drive.

I've started working a personal trainer (I've informed her), and we go slow, but I typically have to sit in my car and rest/cool off 30-45 minutes after sessions before feeling okay to drive. I have found my heart rate just doesn't recover quickly and will still be around 110 (sitting) an hour post workout.

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I answered what best fit based on what was up there...but I wanted to add a little bit. For me, any upright exercise not in water or a pool is absolutely horrible unless it's just a light walk and only when it is cool so usually the evenings. My fluid retention/blood pooling gets 10x worse with upright exercise. My new doctor actually just told me to avoid running and any upright exercise period. This could be because of small fiber neuropathy...but has anyone else been advised to avoid this type of exercise? Or notice that they specifically get worse with upright exercise?

On my best days I swim for about 30 minutes. I think anyone with access to a pool even 2x a week should do this. It has been imperative to me getting aerobic exercise while staying cool and it is easy on your joints. I also have yet to get any sort of blood pressure change or presyncope in the water. Only when I get out. I definitely do not overdo it. Every day is for sure very variable! Don't get me wrong, I still get extremely worn out even just after 20-30 minutes in the pool of intermittent slow laps, treading some water, doing kicks, etc.

By far my worst after exercise symptom is extreme muscle weakness that borders paralysis to a point and tremors/spasms. I usually can't immediately walk or my hands shake so bad I drop everything I try to touch. My arms will be so weak I can't even shrug my shoulders or hold them up. And, I am almost positive it isn't bceause I am overdoing anything. Sometimes this will even happen after I carry a few bags of groceries from my car into the kitchen. Does anyone else have horrible muscle weakness and cramping/spasming? It even affects my neck and mouth muscles to the point my lips quiver and swallowing can be a struggle. It's hard to explain I guess. At points my neck muscles twitch and spasm so much from weakness from exercise (or even driving, or a few hours at a computer holding my head up) that if myself or anyone places a hand on the front of my neck/collarbone/throat area it feels as though it is constantly rippling and vibrating.

I also get discouraged/frustrated that it is so up and down and inconsistent. I felt like before ANS stuff happened I had normal response to exercise like strength increase, energy increase, muscle mass and tone increase, etc like you would expect if you were exercising rather consistently. For example, when I began running I was able to increase incremements very frequently until I reached my goal, without major backtracking. Now it's like even though I make sure I am continually exercising 3-4x a week and for most parts I am physically moving around a good portion of the day but I can't seem to gain any strength or be able to add much to my "workouts". I don't notice any normal benefits you are supposed to notice from even mild exercise! Like breathing more efficiently or increased muscle mass or adding time increments to a swim or yoga session. My strength and exercise ability is so unpredictable. For maybe two days I feel okay and like maybe I am gaining progress then the next time I am back at square one.

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  • 2 weeks later...

I posted this response to another chat topic:

It has taken three years, but I do a 30 minute boot camp class six days a week. Most of the people I work out with don’t know I have Dysautonomia. The ones who do know really don’t understand what it means. Since I started the class six months ago, I have fallen a few times, lost my balance many times, and struggle every time. I am known as the silent warrior, because I quietly push through and finish every class when others are visibly struggling. What keeps me pushing myself is that I don’t want to lose my battle with this disorder. Even if I have to deal with it for the rest of my life, I am determined to do it on my terms, and not miss out on life. I do find that I get a small window of feeling normal, which makes it worth it. I have hypersomnia in addition to fatigue, so I am really tired the rest of the day. There are days though that if I have a headache, or I am lightheaded because my heartrate is too low, exercise helps me feel better. I had to start out slow, but with time I am able to do more.

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  • 1 month later...
  • 3 weeks later...

Wondering if anyone noticed any contradictions with their body like this; if you have me slowly walk a block or two I can get an immediate onset of symptoms, but when I did my stress test which is much more physically strenuous and starts pretty immediately I didn't feel as bad. Similairly carring anything of weight (5-20 ibs) even for a few seconds I can immediately make myself feel terrible, however when I carry my groceries up to my apartment I don't feel as bad, and their probably 20 ibs and one flight of stairs up.

It is as if I try to do things slowly and carefully my brain falls apart, but if I just grab everything and go then I usually have a much better reaction.

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When I walk the dog, we have to keep it moving at a decent pace or I feel terrible. I think it's how much blood my leg muscles are pumping into my body. When I go slow, I can feel the pooling.

Carrying weight is always an interesting thing for me too. For example, I had a terrible time carrying a laundry basket up to my room. But, I bought a laundry bag that has a shoulder strap and I do fine carrying that upstairs (well, no worse than if I'm going up stairs without any extra weight.) Also, moving something heavy a short distance, for example a 40 lb. box of cat litter a couple feet to reposition it, is not a problem, but carrying a light weight for a while, like my purse through the grocery store, is terrible. I have to put my purse in the cart or I feel like I'm attached to a lead weight. This particular phenomenon I haven't figured out yet.

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It has taken me some time to build up my ability, but I can do pretty much any cardio I want (the hardest cardio I do is mountain biking). I should add that I was an athlete prior to finding myself with health problems. I worked out twice a day many days to prepare for the sports I participated in...so I came into these health issues being extremely fit. Doc thinks that my problem could stem from deconditioning after a traumatic injury - I believe that I had mild Rhabdo, the doc I saw at the time refused to test me for rhabdo. I was never able to perform at the level I used to perform at after that injury.

HOWEVER, If I try weight lifting, even body weight like pushups, I pay with severe muscle and tendon pain, particularly in the coat hanger area. I've been seeing doctors for 3.5 years about that and no one can figure out why. I was involved in a car accident (driving a race car) about 12 years ago and I did have a neck trauma, but for 9 years it didn't bother me. I'm kind of resigning myself to the fact that I just lived life to hard core with all these risky, hard on the body sports and now I'm paying for it before I even hit 40.

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  • 2 years later...

I see this was an older post, that has been brought up again from time to time. I have a diagnosis of pots and cfs. I have tried exercise a number of times over the past nine years. (water aerobics, stationary bike, walking) It always leaves me feeling wiped out. Some easy yoga in bed is the most I can do. My husband bought a rowing machine, and I tried it very slowly for the past 2 weeks, and get headaches almost every day I have done it. I was looking to see what some others have experienced with exercise, and saw headaches listed by someone, so I know it must not be "all in my head." I started at 2 minutes, and worked up to 3 mins, then 4 mins. thinking my body would get used to it, but it did not.

My doctor mentioned at my last visit "he does not want me to get deconditioned". Well, just trying to take care of myself is going to have to do it.

My answers to the poll did not fit neatly in the boxes mainly because of the last question, I do not feel I benefit from it. If I had chosen an answer, it would be to improve self esteem. It always makes me feel good if I can accomplish something, but this exercise thing, unfortunately has not been working out for me.

Thank you to everyone who shared their experiences. It always helps me to be able to relate to someone who is going through the same struggles with this chronic illness.

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