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How Do You Find The Energy To Exercise?


IDreamInColor
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I keep reading where exercise is important for people with pots, but I'm wondering where you all find the energy to do so? I have been incredibly weak, and can't stand up for more than 7 minutes without problems. I noticed some of you here walk, how do you not pass out while walking? Just bringing a load of laundry up the steps shoots my pulse to 160, I imagine exercise would shoot it way higher, and I must admit I'm afraid of that. Am I just being a pansy? Do I need to put my combat boots on and do it anyway? lol

Two nights ago I was having a really bad day, I had another meltdown and started crying, and then I got mad at this disease and at that moment I wanted to put my shoes on and take off down the sidewalk, and just walk until I passed out,lol I didn't of course, but I sure wanted to.

How do you do it?

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For me, going up one flight of steps makes me feel 10x worse than walking a mile on a flat road. I walk quite a bit, but mostly on flat surfaces and not pushing myself to go too quickly. I always make sure someone is walking with me, and I take lots of water or electrolyte drinks with me. I couldn't do that much over the summer or right after I was diagnosed in late spring but I can do it 3-4 days a week now.

The other exercise that is usually recommended is a recumbent stationary bike. I love mine and I found it helpful in building up endurance over the summer when I couldn't walk.

It probably also depends how active you were before you were diagnosed and how bad your case is, I would think. I was super active before diagnosis, doing about an hour of kick-boxing, yoga, or elliptical per day and in school I was a sprinter in track and I did fencing and marching band. I can't do yoga hardly at all now because the up-and-down sequences make me faint. I can do some aerobic activities, but not like before and not for very long.

Whatever you decide to try, definitely start slow :)

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I started exercising with a recumbent bike. I could only do a minute or two at a time on a low tension. Eventually, after a year or so, got up to 30 minutes on a higher tension. Made my legs look good too.

I also got a referral to PT. I asked the PT for leg strengthening exercises I could do laying down. He adapted a bunch of them for me. I also bought those weights you put around your ankles and used them to do leg lifts.

Being able to exercise was a very slow progression but I am convinced it is why I have a sort of normal life now. I was told I had to retrain my body to being upright. Getting the legs stronger made it easier for me to walk.

I also live right by the "Courage Center" which is a place for handicapped people and they have a pool and I just sit on a floating noodle and move my arms and legs around. It is great.

I find walking easier than standing. And the stairs still raise my Heart Rate, especially when carrying laundry. I think it must be the laundry that causes the problems...lol

My advice, start slow and try not to get discouraged. Talk to your body, you are on the same team, "Yeah body, let's see if we can do another 10 leg lifts". Seriously, I did that. I read you have to love your body and not be mad at it, and when I read it I thought it sounded stupid, but then I realized I was kind of mad at my body.

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I'm with the other folks...I find walking at a steady but not too fast pace much easier than standing still or going up steps. I started trying to walk my dog only a couple days a week for about 10 mins. I have now worked up to almost every day (there are still the occassions when I can barelymake it to the bathroom in the morning) for about 20 mins. I do feel sick afterwards and have to lay down for an hour or so, but, I am making progress (and that's what's important physically and mentally). I also use the recumbent bike (not the full deal, just one of the pedaler devices that you sit in a chair and pedal). It was about $50 and much more affordable than the real deal. The doc says it will acomplish the same thing. He had me start slowly and work up the time each week.

On some days I have to push myself. (The dog definitely helps my motivation with the walking as she nudges me with her nose at the "walking time".) There are, as I said, the occassions when I still can not do it, but, I do feel better on the days when I can manage to get it done and it has shown a steady progression of making me more functional.

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It's super super hard, that's for sure, I get mad and want to escape POTS as well but that's the thing its the ALL THE TIME, it has no discretion, and follows you everywhere. Grrrrr.

I've tried lots of different exercises and could never keep up with them. then, I found this exercise program on a CFS forum a dr developed for her patients and thought I'd give it a try. I've stuck with it since the beginning of the year. Here it is

OK, I finally found my exercise information. Here it is summarized:

**All of these are to be done lying down.** Use heart rate monitor while exercising so that you will not exceed your personal limit.

First and foremost work on focused breathing. These breaths should be taken slowly and deeply. Put a box of tissues on the stomach if you are not sure you are doing it right. The box should rise on inhalation and fall on exhalation. Inhale 3 sec. exhale 3 sec. Do this before you start exercises and 10x between exercises. [breathing helps oxygenate the blood & facilitates recovery from each exercise.]

Next, work on TVA (transverse abdominal) These muscles are at your body’s very core. Start by making a Haaaaa sound when you exhale (as if you were fogging up a mirror). Do this to a count of 3 then release

Start off doing 1 set of 4 reps to ensure no payback

~Toe points: Point toes then bring foot back towards leg as much as comfortably possible

~Contract thigh muscles (quadriceps) for count of 3- release

~Contract gluteus muscles for count of 3- release

~Contract biceps by bringing fist up to shoulder then back down to hips

~Overhead press: start fist by the shoulder, rotate fist outward, extending

arms then back down to shoulder

Once you are sure there was no payback, increase reps, then when ready increase sets ex: 2x/day then 3x/day. After you have increased to 10 reps 3x/day then you can add therabands to toe points, leg extensions (leg up in air, knee bent back toward face, push out to create a diagonal), bicep curls, overhead press. These are color coded according to the amt. of resistance. Purchase at sporting goods store or online.

This next bit is not for everyone. It is very expensive. It is called the Pilates Reformer. If it is possible for you to use this machine the benefit would be great to those with POTS & ME/CFIDS. This machine works perfectly with this illness because most things can be done lying down which keeps the pulse lower. You can actually “walk” while lying down if it has a rebounder on it (mini trampoline). Many exercises are done with your legs in the air which helps the pulse rate to stay down even more so! It is almost as if it were designed for this illness.

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I agree with everyone else. Take it slow. And I mean slow to the point of ridiculous. When I was so physically weak, as you say you are now, I did not exercise at all. I waited until one day I felt like I could do just a little. That was after I had been on doxepin and salt/fluid loading for a few months. I walked with my husband just a few steps outside and we went back. It was kind of a big deal lol. It helped me to have someone there. Very gradually I was able to do more and more. We were just talking about this at dinner tonight. Last year at this time I could not have imagined being as active as I am today.

BTW, I think others' advice about exercising while recumbent is really good. I wish I had done that to begin with.

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I continue to try, I'll never give up trying, but 6 years later I'm still at square one. If I look at how I felt 6 years ago, I'm much worse off today. No matter how little I do or how slow I start I'm wipped out for 24 to 48 hours after doing something. For me it's major exercise just to do minor housework, the next day always feels like gravity triples over me.

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it was particularly hard for me to pull myself together enough to exercise after I'd had 2 surgeries in one year; I wasn't able to work or take care of myself without help. It took physical therapy and slow, but steady building of time exercising...as simple as walking (which works well for me b/c with the muscles constantly contracting, i'm not as dizzy as exercises where you stand in one place). 5 years later, I was able to start yoga, and most days that I go, I'm NOT feeling up to it, but I do it anyway. Sometimes I end up sitting, crouching, or balled up in child's pose for way more of the class than I'd have wanted, but it's at least SOMETHING. And on the days when I'm able to do the whole class, I feel SOOooooOOOOOOOoooo much like i've accomplished something important.

Nina

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My doctor definately believes in exercising as much as possible to help prevent deconditioning of the body. I agree, some days it's just really, really hard and some days it's a little easier. I have a treadmill at home, and also go to a gym where I do the EFX machine. On my good weeks, I do 2-3 days at home, and 1 or 2 days at the gym. I can't do much with weights because of my small fiber neuropathy (pain in my hands/wrists & feet/ankles).

Obviously not everyone here can participate in exercise, but there are also good exercises for those who have to do them in a prone position, too. I believe that the exercise has helped my symptoms quite a bit. Sometimes it's the days I feel the worst when my exercise is the best.

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It is hard to do but I try to do some exercises everyday. I have to do things like yoga. The website www.doyogawithme.com had some routines that are suppose to be for seniors but work great for me. Not too much up and down. I can't walk a lot it tires me out too fast.

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I can't do any land based exercise, my EDS has compromised my joints to the point where gravity causes too much strain. I can walk in a pool, and am looking forward to starting aquatic physical therapy in a couple weeks. Plus a warm-ish pool is just soothing!

Sandy

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For those of you that can exercise, how do you feel the next day or two days after? Do any of you have PEM (or PENE as it's now called?) Man my muscles cramp and quiver and are so weak even doing light resistance movements laying down, and like I said the next day I feel like I've been hit by a truck.

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toddm1960, it varies for me. I don't have PENE, I have POTS, NCS, and panic disorder. Sometimes, especially with the recumbent bike, I feel fine the next day. Often with yoga, I'll feel terrible the next day and need to sleep for a long time once I get to sleep-- overdoing exercise also makes it hard for me to fall asleep (probably because of excessive adrenaline). Last Monday, I overdid it with 20 mins of yoga, 15 mins of leg & buns exercises, and then a 45-50 minute walk. I felt awful for the next several days-- lots of trouble waking up, getting out of bed, plus feeling super dizzy, nauseous, headaches, and lots of occurrences of pre-syncope. I don't know if it triggered a flare-up or what, but it's Saturday and I'm still feeling crappy, which is unusual for me :/ You just never know what this disease is gonna do to you!

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not sure what pene stands for, but i have EDS and POTS. I try and walk for 2 hours every night, and do a 30 minute walk @ lunch where possible. Often it's just pacing up and down my street at night for 2 hours listening to an audio book, boring but it helps. If i have a bad day I do walking circuits around my living room rather than going out.

My Dr Recommends using a squash or stress ball and squeezing for 30 seconds and then releasing every so often to keep BP up when standing. I kind of do this anyway when walking, i take a 2 litre bottle of water with me and have got in to the habit of curling it which helps.

I searched for squash ball on the forums and got no results, does anyone else squeeze a sports ball of some type when walking around to keep BP up?

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I don't feel like exercising. If I manage to fix my meals & do a few chores around the house I've had a good day.

It takes me 2 days to get over going to a dr or dentist. Sometimes I would like to get out & walk but I know that I would

be debilitated for a few days & it's not worth it to me. We all know our limits.

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  • 2 weeks later...

I have never had the energy--fibro, chronic fatigue, chronic myofascial pain, narcolepsy, never getting into deep phase of sleep, and now this autonomic nervous system failing. I have always been an exerciser tho (until this summer when absolutely couldn't do anything without near faint or faint). I'm hoping the Rxs will be helping to keep the BP up enough to resume exercise albeit in different form.

Always have to start at a snail's pace. Rheume who specialized in fibro explained to me that I walked a fine line with exercise without over stressing that would induce inflammation as that would cause setback (2005 before dx of orthostatic hypotension + autonomic nervous system failing in 2011, walking even finer line). Both arms and legs are hypotonic and I pool blood/fluids in the legs and feet when they are dependent.

Currently (as the gentlist form of least resistance to build strenght and endurance) my cardiac specialist ordered phys. therapy using treadmil in aquaciser twice a week. I'm strapped to safety belt with therapist attached at other end. The water is warm with jets and it is rather relaxing. they work my time and pace up gradually. Cardiac specialist also told me that I could use a recumbent stationary bike (no bikeing as I so loved as I'd had a couple of spells while riding and several spells with the dismount). I know I must exercise. The legs will only get weaker and lessen what little ability I have to stand and I will lose range of motion in the joints. Since I've had significant trauma/damage from being hit by a car, I do leg exercises on the bed. I use weights only if I am having a good day and I never push myself to the point of hurting or tiring. I do strive to work up to more no matter how gradually.

It's funny as if your cholesterol is high 'exercise and diet' (same with hypertension and diabetes); if you go to ortho or rheume or physiatrist, exercise is pushed and there is sound reason. We just have to be atuned to our bodies, committed to knowing it is for our good, and taking baby steps til we reach a comforatble pace for ourselves.

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i've struggled to exercise while stood up for a while now and while it was getting better slowly, my progress was very slow. but now i have my wheelchair i find i can do proper actual sport now (i play badminton once a week, something i thought would be impossible).and i started playing 2 weeks after i got my chair so it was definately the chair that makes it possible....... been playing for a few months now and have noticed that my overall health has improved a little and i dont get as fainty as i used to do when i get up and walk around my flat so i think the cardio exercise is beneficial to my dysautonomia (just not when i'm stood up.....).

maybe doing exercise sat down would help you too? some disabled sports clubs have chairs you can hire for the class, and you can cycle in gyms using semi-recumbent bikes etc.

fi xx

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oops, forgot to add- exercising sat down (or laying down for when i do much of my physiotherapy) has helped with my tiredness and hit-by-a-truck-ness the next day, unless i get too carried away. simply walking across the road makes me feel awful the next day although sat down i can play badminton for an hour with little side effects the next day..... maybe cos my body doesnt have to work so hard to control my blood pressure, heart rate etc during the exercise session? frees up some energy for badminton fun! woo! :D

fi xx

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Todd,

Is PENE the same thing as exercise intolerance or is it an actual diagnosed disorder/syndrome in addition to your POTS? Interested in learning what it is and how the medical community dx'es.

I can have pretty bad post exercise issues depending on the day and how much exercise I have done. My POTS doc specifically told me on my last appt that he would rather have me only do 10 mins on the recumbent bike if I think that 20 mins will land me in bed that day (or several days). He said its worse to be bed/couch-bound than it is to do a little less exercise on a given day because being in bed deconditions faster than doing less/easier exercise.

Katie

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