Exercise

[DSM3KIDZ]

I decided to start exercising again because I'm sick of sitting on the couch being depressed. I've been learning the more I occupy my mind the more I don't concentrate on feeling crappy all the time. I've been like a mom on speed lately. I don't want to stop because when I do I feel all my symptoms. I'm probally over doing it but at least I don't feel depressed and sick every minute.

Today I ran a mile. I walked some and took a drink inbetween each lap. I don't have a heart rate monitor but my husband is an EMT and would check my pulse before letting me do another lap. At the end my pulse was high and I felt real nauseated but it was very humid and my husband thought it was okay since it was so hot and I didn't run in about a year.

My question is if I push myself could it hurt or help? I need to lose 10-15lbs and becasue of gastroparesis I just don't get the proper nutrition so I can't go on a diet. Besides I eat good but I never lose weight from a diet. Only exercise.

So has anyone pushed themselves with exercise and found it made you worse?

My plan is to run a mile 3x a week and than do some light weights inbetween. maybe do some pilates or yoga on days when I just can't handle much.

Let me know your thoughts

dayna

[Guest tearose]

dayna, this is a very good and important question!

Please allow your body to build up again slowly!!! Your mind will be ready to jump and run but your muscles may not be ready and you don't want to do damage.

I have the unfortunate experience of "pushing too hard" and in brief, here is what happened...After a spell of a virus and nearly no activity, (about two months) I began to feel up to increasing my activities, I did not realize how weak my muscles had become and did too much too soon. My muscles were in bad shape and by lifting and pushing and working in the garden lifting and digging...my pelvic muscles tore and collapsed. Over the following few weeks I began to have bladder problems, pain in my groin, and generalized pelvic problems! I wound up needing surgery eventually. ( I am okay again but I needed mesh sutured to pull my pelvic muscle up and back to my internal supports!)

I would suggest you do activity BUT increase in small increments over time!

I am so happy to hear you are feeling up to getting active again. It will also astound you how bad you were once you are back in a groove again!

best regards, tearose

(I think a post on this topic was called "when pain is not gain")

[LisaColumbus]

I have a question for all of you re: exercise. I saw Dr Grubb last week and he wants me to try doing dome cardio exercises. We discussed swimming but it doesn't look like that is a viable option. Does anyone know good cardio exercises that you can do at home? Right now walking up 4-5 steps leaves me gasping for breath.

[MomtoGiuliana]

I think it is great you are exercising. Yes, it is possible for anyone to push themselves too hard, especially in hot, humid weather. I am glad your husband is monitoring you, and you are trying to stay hydrated, as POTS patients seem to be even more susceptible to heat and dehydration.

I think the best approach is a stepped up one. You know what your tolerance is--where you are with fitness right now. If you haven't exercised for awhile, you really want to take it slowly. I am not a physician or an exercise specialist, so I can't advise you beyond that. I can only say that I started with floor exercises, just 5-10 minutes a day, after several weeks, did about 30 minutes a day. Then I started walking (pushing my baby in her stroller) for 30 minutes then an hour a day. Then I started more aerobic work-outs, which I still have trouble handling much of. The extent of my aerobic exercise is climbing stairs, dancing with my toddler, and a bit of running! This is when I am feeling pretty well.

My specialist pushed me to exercise from the day he diagnosed me.

Overall, I would say, yes, in my experience, it is good to push yourself. BUT, at the same time, you want to use the general common sense regarding exercise that anyone would follow, regarding starting slowly, and preventing any overheating or dehydration.

Katherine

[danelle]

Dayna,

I think it is WONDERFUL that you are able to exercise!!! But I am like the rest, start slowly and build yourself up. If you have any symptoms, STOP.

Unfortunately I am like Lisa, I can't do ANY form of exercise whatsoever without severe symptoms.

I would encourage you to exercise IF your doctor ok's it, but just take it in steps, and do some for me too would ya

[yogini]

I am with the others, go slow. I think that for those of us who have seen our symptoms get better, it has taken a really long time, like several months or a year. Exercise can make a big difference, but only gradually over time. I can tolerate a little increase in symptoms after exercising (like tachy or a mild headache), but anything beyond that is not worth it.

I started off walking up and down the hallway and doing Yaz exercises. Like many of you, there were lots of days where I could only take a few steps; but luckily it got a lot better over time. (I think even few steps, if you can do them, count. ) Then I graduated to taking walks, then pilates, which is awesome b/c it's mostly on the floor. I also have a small peddle exerciser from sharper image which I am up to doing 20 minutes on now. A few months ago I was out of breath after 2 min, so I'm really excited about this!!

One other thing -- when it's reallly hot and humid, you may want to exercise indoors, or if you're going outside do it in the early am or late a night. The heat is bad enough for regular people, let alone us POTSies.

Also, there have been a ton of great posts on this topic, so you might want to search the site for other recommendations.

-Rita

[Laura]

Hey guys! Thought I'd chime in here! I had mentioned a while back that I was in an exercise study. Still going with that and doing OK. I ride the recumbent bike three times a week. I can't tolerate walking, climbing stairs, swimming, and certainly not running, but I really do OK with the recumbent. I set the intensity level to a level which I feel to be "fairly light" exercise as advised by my study co-ordinator, and manage pretty well with that. I was really surprised at how well I can manage considering how rough things go with just walking. Right now I am doing 6 minutes at a time, and we try to change things up every week or so and adjust the time by how I am feeling. If things get tough, I back down for a bit then try picking up the next week. I have my bike in the basement where it's nice and cool so the heat doesn't flare up my symptoms. It's very important to drink lots before doing your exercises and during as that is what will aide in increasing the blood volume. Also, I always do the exercises in the evening as I seem to have a much more difficult time in the early day. This is what works for me... Everyone here has such varying degrees of symptoms that it's really hard to know what is going to work for you. I guess you have to experiment until you find something that you can tolerate and that isn't going to make things worse for you! Take things forward gently and be sure to listen to your body! Laura

[lthomas521]

Warning, warning, warning! Exercise can make you sicker! It all depends on why you are sick to begin with. If you are already exceeding your body's performance capacity, then trying to increase your activity level could cause serious problems. A Canadian Society for people with chronic fatigue syndrome (or myalgic encephalomyelitis) has an interesting article on this topic (http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical)

Several doctors had told me that I just needed to exercise. They wouldn't listen when I tried to explain that I couldn't tolerate exercise. My theory was that I had some sort of endocrine or metabolic problem. Their theory was that I just wanted attention. Fortunately, I found out through trial and error that enormous doses of the vitamins that they give to people with mitochondrial disorders transform me from a chronically lazy hypochondriac into a normal person. I suddenly was able to resume a normal lifestyle, which involved long walks and running up and down stairs.

The moral of the story is that you cannot exercise your way out of a metabolic error. If exercise makes you feel worse, not better, that in itself is an important clue as to what's wrong with you. Don't make yourself sicker by trying to prove how tough you are.

[blackwolf]

i have to say slow and steady, start with super easy and work your way up, i started just with moving my arms and legs while sitting on my chair and have worked up to 3-5 pounds, leg lifts and stretches, along with swimming. i has taken me nearly 2 years to get here.

as to cardio work, i would suggest recombant bikes, sit back and ride, slowly

work your way up. i swim, but have been having trouble with it. i can't afford my own equipment or a gym so i keep pushing to swim. i admit that i mostly use my arms, but to keep up with the kids i have to kick some. i have been having tons of trouble walking and haven't been downstairs for several days and have resorted to baths and showers at the pool.

best of luck,

blackwolf

[teacherdiva]

I'm not a doctor or anything, but I can offer you what I have learned from experience. Before I was diagnosed, I was a triathlete and a swimmer for a major division one school. All that has changed since my diagnosis, and it has been difficult because of my love of exersize.

I have found that I can still swim (but I need to be VERY careful getting out of the pool).

Running and biking can only be done indoors because I am extremely sensitive to heat.

If you like to run or walk and the humidity is bothering you, you can always do it in a pool. You still burn calories, still sweat, but it removes the gravitational strain on your body.

Water aerobics are another fun option that I use when I'm feeling up for it.

I hope that helps!

[DSM3KIDZ]

Thanks everyone for all your imput. I don't know why I have POTS, Autonomic neuropathy or gastroparesis. It happened overnight which I feel was caused or triggered by a stomach virus or stress. So I guess I'm going to give "pushing myself" a try for awhile. I feel like crap anyways so why not. I ran the last two days but decided to run 1 lap and walk 1 for a mile and that helped cool me down alittle. I didn't experience nausea like last time. Just a headache but I'd have it regardless. I just want to lose alittle weight while making my body stronger so I can try to get back to myself. I figure if you can make your body strong maybe it will help heal it!! Or maybe I'm hoping for the unrealistic but it's a trial and error thing. If I start getting sicker I'll obviously stop but I need to know if I can fight this from taking over me. As many of you know I've been real depressed about my "new life" and I just don't want to feel that way anymore. I want to some how have some control over my life and I hope exercise helps me with that. I need to keep up with my 3 cuties and would some day like to expand my family more but if I want that to happen I have to get in the ring and atleast try to fight. If I lose the fight than I'll have to search for acceptance but as of now I'm having a REAL hard time with that. I feel overall compared to last year (sick since 8/04) I'm improving without meds and I hope it continues. I know it takes time for the body to heal so I'll be patient since I have no choice.

Thanks for all your advise. I wouldn't be able to push myself if I didn't get to know everyone on this board because I read about all of you pushing yourselves to have an enjoyable life even through the bumps in the road. I'm proud of everyone on this site for being as strong as you all are. Just think if you put us all together maybe we'd be strong enough to conquer the medical field and get them to step up and challenge us.

Good night

Dayna

[Dawg Tired]

I was walking 2 miles 5 mornings a week when I got sick. I had been doing that for several months prior to my illness and when the symptoms started I had to cut back until I totally quit. My friend - a cardiac nurse - forbade me to continue. It was frustrating because doctors at first would say, "If you would just EXERCISE you wouldn't be having this problem!" Now I have days when I feel pretty good and I can walk a bit but some days when the walk to the bathroom is a lot. I can pretty consistently do my recumbent bike for 10 min or so. If I push myself though, I will be bedridden again.

[Kite#7]

Hello All,

This will be rather a short post compare to my usual long winded diatribes as we are in the midst of packin' to move cross country and this heat is killing me so don't have the time. Suffice it to say EXERCISE will ---WILL help you !!!! no IFS ANDS BUTS or OTHERWISES about it. The problem arises when it is PRESCIBED mindlessly. The regimen is what is important. The how , what , when. All of these things MUST be thought out as part of your health regimen ; as much as DRUGS , DIET , PHYSIO , ETC. the manner or approach should encompass a goal requisite to helping your condition. Increasing blood flow /volume , lean muscle mass , O2 exchange , fluid retention , managing HR & BP . These all can be aided & affected with the Proper exercise and Nutrition ( to include supplementation ) regimen. Not to mention the mental aspect involved ; the physilogical release of endorhiphin. It not about being TOUGH. anyone affected daily - dealing with these Dysautonomic Diseases are "TOUGH" mentally and physically. Its about taking action ; helping in the process of living. Its about quality of life. Nobody should expect to work beyond the limitations of their bodies ,but you also don't want to limit your body from working. Research , and start new things as exercise takes many forms - But YES there is no choice Exercise helps.

Kite 7

[morgan617]

I can do a recumbent bike, but that's it, and not for very long. But it's the only thing that doesn't kill me. morgan

[Sunfish]

much of what there is to say has already been said, but i'll just re-emphasize the fact that it truly is a fine line...up to that line exercise & pushing it will help, over the line may hurt...not in a permanent drastic way but in a way that can be a set back & a source of much frustration. in the past dr. grubb has said to me that he has to push most patients to push themselves; for me he has had to make sure i don't overdo it. that's my old competitive spirit, varsity sport nature of no pain, no gain. there can definitely be benefits to pushing, but at least for me i've had to redefine what pushing means; it not what it used to be for me.

that said, when i was first diagnosed with NCS years ago i was a varsity athlete, did a triathlon less than a week after my first TTT, was on an army scholarship, etc...i didn't have any heat issues in those days & was fine generally as long as i was moving (and not standing). i'm in a different spot now but some with autonomic issues can exercise with hardly any problem; we're just all so different.

and that fine line i was mentioning...it can change on a daily (or even more frequent) basis, which can add another challenge. for me i can set vague goals but cannot set something as rigid as a certain time or distance a certain number of times per week b/c it's simply setting myself up for discouragement right now; this is different for different people i'm sure but for me i'll push too hard if i'm "scheduled" for something.

in the past i've had success with swimming...just a little bit, and having to lay down afterward right away (i always warn the lifeguard ahead of time so as not to cause a stir). i haven't been able to try this lately as i don't have access to an indoor pool & it's too hot outside. i've also been able to lift some - while seated. and to use a recumbant bike.

currently i just started a cardio rehab program & am trying my best to not get frustrated. the first day i couldn't go more than 5 minutes with no resistance on the rec. bike. it was weird b/c my issues previously were that my HR would go up & up uncontrollably. now i'm on a beta blocker but i got really dizzy b/c my BP was dropping (they measured). i'm working up though & have been going about 3 times a week for 2 weeks with already some improvement. i've been doing some (seated) lifting too which has been okay with rests (laying down) inbetween.

please be careful though with the heat. it's awesome that you're getting out there & pushing it but realize that it's okay to have a day where you don't as well. that can be the wiser thing sometimes, as hard as it is to block off that old athlete mentality. it sounds like you're already adjusting as needed though which is good.

i've also done well with pilates at times, adjusting the standing exercises & enjoying the fact that much of pilates is laying/seated to begin with!

for me, and probably for all of us in our own ways, it's all about that ever-changing (& often mysterious) fine line....

:-)melissa