To Excercise or not to excercise.....

[lalalisa]

Hello friends!

I've recently been told by my Dr. that light excercise may help my extreme fatigue. But I am so tired that when I do have energy I try and clean my bathroom and do things that actually need done around my house...does this sound familiar to anyone?

I would love to try some light weight-lifting, etc. But is this realistic?? What do you guys think? If it is actually going to help me improve it's definitely worth a try.

I would love feedback regarding your endeavors in this area, whether it's weightlifting, walking, or whatever.

Thanks again!

Lisa

[Laura]

Hi Lisa! Have you tried the YAZ exercises yet? There is a link on this Dinet site under What Helps and you can print off the exercises to try. Another suggestion might be to get some of those weights you can strap onto your ankles and just wear them while you are doing your chores ( cleaning the bathroom) for the first bit and then work your way up as you can. Don't go to hard too fast, just getting the house clean is challenge enough sometimes!! Laura!

[briarrose]

Lisa

I've been told that light exercise is good but swimming is the recommended thing. I disagree about the weights on the ankles for several reasons especially if you get fatigued easily, I don't think the benefit outweighs the consequence.

If you can do exercises on the floor that would probably be beneficial but I'm definitely not an authority in this area accept to say that all the doctor's I've been too stress swimming.

[Merrill]

Lisa, three words: yoga yoga yoga! (Not the bikram kind in 101 degree heat! ) A nice gentle hatha yoga class ... feels great while you're doing it and after. I think the videotapes and such are too difficult and hard to follow along ... but I found a great SLOW, EASY class ... where the teacher very very rarely suggests a correction in position, and he lets you do things at your pace. If you need to stop doing a stretch, there's no guilt (or criticism) about just stopping. You have to be sure to do only what you can do ... and as you get stronger, you'll find you can do even more! (It does increase muscle tone as well as provide some aerobic conditioning .. and the meditation part is wonderful and something you can practice throughout the day. Also, you can do these lovely stretches at home--child's pose, for example, when you're really tired--and feel better when you're done!

Ankle weights would kill me too, by the way ... my legs already feel so heavy. A cardiologist once also recommended that I increase my walking--start slow and then increase--but to ALWAYS wear my compression hose when walking or doing ANY form of exercise.

I've also heard swimming is great for us but I can't really swim so that's out! Most important would be to try something you like. Good luck finding something! Let us know what you try..

m

[yogini]

Hey Lisa,

Sorry you are feeling so tired. I totally understand where you're coming from. Between work and light cooking/cleaning and errands I am left with zero energy. And what energy I do have, I like to do something fun if I can!

I still try to make myself exercise at least a couple of times a week, even if it's only for 10 min or so. For me, exercising at home is really important because its hard for me to get around, and I need to be able to lie down if I get tachy right after the exercise.

Pilates really worked for me over the summer. I used a DVD and most of the exercises are on the floor. I even lost a few pounds. But then I went to Mayo (after I had a big crash) and they said I should focus on my legs. I tried ankle weights for a while, and resistance bands (which didn't seem to give me enough resistance), and then I bought a little peddle exerciser. It is a mini-version of a bike which sits in the corner of my living room. I just ride it for 10 minutes when I have the time and feel up to it. And I can watch TV while doing it too! I am going to slowly increase the time, and eventually I will go back to the gym.

Anyway, I think any kind of light exercise would probably be good if you can handle it, especially if it involves the lower body. And I would recommend either pilates or the peddle exerciser, because they both seemed to have helped me. Also, walking is really good too - on days that I don't exercise I at least try to take a walk or two.

Good luck,

Rita

[Ernie]

Hi,

Befofe my doctors were telling me to exercise and I kept telling them that it made me worst. Now I have a new cardiologist and he put the exercise on hold until we can find why I have muscle weakness.

Ernie

[steph37822]

oops

[kristinp29]

Hi Lisa,

I actually consider those things exercise on my more difficult days! I figure that if I work up a sweat and breathe harder, it must be exercise!

On days when you have more energy, just try walking a little bit. You can start out with something as little as 4 minutes and just keep working yourself up in little, tiny increments as you think you can handle it. I started with that while I was homebound for almost 2.5 years with POTS, and last semester I attended college part time! It really helps, and you keep gaining more energy the longer you stick with it.

Best of luck to you!

Kristin

[Guest tearose]

Hi Lisa, good question. Remember, pain is not gain! Take it slow!

You are so right too, some days just going up a flight of stairs is exercise!

I think the best way to keep ourselves from becoming de-conditioned is to a tiny bit of something when we can start getting more active and very gradually increase over weeks.

That is going to be bottom walks on the floor to walking for some and for others who are stronger, maybe from walking on a treadmill to running on a treadmill.

When I have needed guidance I have learned to consult with my physical therapist. This way I know I will not be hurting myself.

Make using weights your goal if you wish! Just don't rush into it.

take care, tearose

[MomtoGiuliana]

Lisa

You've gotten great ideas here. You definitely will want to take it slowly, but exercise is important to re-condition yourself. It is important to strengthen the muscles in your legs, in particular. Some days, cleaning the bathroom truly is exercise enough. If that tires you on some days, it probably won't be helpful to push yourself further that day. I do find still that any cleaning work that involves leaning over or reaching up can be pretty tiring.

What worked for me was starting with floor exercises, as I felt less fatigued doing any exercise on the floor. Then I started walking everday, pushing my daughter in her stroller. At first for just 5 minutes, and then working my way up to 30 minutes +. I also started doing more yoga (than just floor exercises). I so agree with Merrill--yoga is generally very beneficial. There are many good tapes/DVDs available. I don't have any indoor pools nearby, so I never tried pool exercise, but water exercise is supposed to be especially good for recovering POTS patients.

Take care,

Katherine

[Karen]

Lisa,

If you have a hospital nearby that offers rehab (treadmill, or bike, and eventually light weights) for those with special needs who need monitoring, I highly recommend that. I have done that, and just completed several months of it. I was the slowest because it took me so much longer than heart attack patients older than me to get myself going. But it didn't matter. I am now able to do on my own and the blood circulating through me gives me much more energy than I ever dreamed I would have. That isn't to say that I don't need my sleep periods during the day or that I don't get fatigued any more. I do. But my symptoms are so much less than they were before. I was with them for more than a year. You call the Cardiac unit of the hospital and ask them about it. Good luck.

Karen

[geneva]

This is always a difficult question since each of us have different levels of exercise intolerance. I found in the first 3 years that no matter what type exercise I tried I would pay for it on a delayed basis the next day or 2. Frustrating! But last year when I tried once again, this time with a yoga instructor, I found that I could do this and felt a great deal of benefit. I do get tired but not the heavy fatigue. Also, no matter have small the weights, I can never use them without crashing. It seems lifting my own body is challenge enough.

Good luck as you try to find something that works for you but know that it may take lots of starts to finally find the right combination for you.

[violahen]

Hi Lisa:

I was really interested to see your post about exercise. I have been trying to deal with this issue for years. I have tried yoga and it was a disaster for me. I am so ULTRA sensitive to postural stuff and my body couldn't handle it. Honestly though, because it was such bad news for me, I never bothered to delve deeper into it to see if there was perhaps another variety that I might try that wouldn't be so problematic. Although, I have found that exercise of any kind is VERY tricky. I was so desperate to get some body conditioning because my POTS is getting worse and my body is getting weaker. About a year ago Dr. Grubb gave me a prescription for "Aquatic Therapy". I was excited and hoped for the best. I did the therapy with a ono-on-one coach who was familiar with dysautonomia at the Cleveland Clinic. Unfortunately, it made me a LOT worse. I understand the concept of being in a pool and having the pressure of the water against your body being a help with bp, etc, but it didn't happen for me. It had sort of a rebound effect. My body seemed the resist the pressure and I had a lot of trouble. In addition, upon getting out of the pool I became VERY symptomatic and had syncopal episodes on several occasions.

After that I gave up for a while and spent much of the past year in a semi-functional state...lots of rest.

However, just in the past couple of weeks I have tried something new at the suggestion of a friend. I had gotten to the point where I was so tired of being tired and wanted to try SOMETHING. I joined the "Curves" gym for women. The reason I thought it might work is that it is truly at your own pace. Slow and gentle is the key. It involves using weight machines, but the machines actually respond to your body in terms of difficulty. They work on resistance. The harder you work, the more resistance they give....the gentler you work, the less. And you only stay on a machine for 30 seconds at a time...or less if you prefer! The machines are staggared in a circle and between each machine is a small platform where you are supposed to just simply move in whatever way you can...also for 30 seconds at a time or less. Ideally you are supposed to continue around the circle for 30 minutes.

I have the added bonus that the owner of my Curves has vasovagal syncope issues, so she is up on the dysautonomia issues. The environment is very supportive as well.

I've been going for two weeks now....again VERY slowly. The toughest part of the "workout" for me is when I am done...my body has a tendancy to have a bit of a crash going from movement to non-movement....typical POTS.

I am hopeful, but also I know that the possibility of me fainting or having tachy at the drop of a hat is very real...especially in an exercise situation.

I have talked with Dr. Grubb at length about the dilemma of POTSies....inolerance for exercise, but real need to condition the body to gain the strength to fight when the chips are down and things are bad physically.

Good luck! I hope you find something that works...SLOW! is key I think, and even then, don't be shocked by setbacks from time to time.

Just TRYING to do something has really helped me mentally.

Keep us posted!

Kristen

[Guest GayleP]

I like doing Yoga and light walking. I never do more than I can. I try to stop before I get too tired.

My cardio wanted me to experiment by pushing myself. The experiement failed. I can't push myself, it makes the fatigue so much worse.

Just take it slow and see what exercise works best for you.

[MightyMouse]

Exercise is typically a great idea for those with autonomic issues, as long as it's not too intense or high impact. Slow and easy is the way to go!

Now, if I could only stick to an exercise plan I suppose my PT will rag on me a bit about that. I'm hoping to get to a point where I'm more comfortable and have some sensation back in my left hand.

Nina

[MomtoGiuliana]

I just wanted to add--I haven't seen this comment in this particular series of posts on exercise--that many POTS patients tend to feel best at the end of the day. I know this is still the case for me. For that reason, exercise after 4 PM or so (or whatever time of day you find you become less symptomatic if you have this diurnal cycle) may be more helpful than trying to do it first thing in the AM.

Katherine

[DancingLight]

katherine...why DO we feel better at the end of the day? i stay up late and sleep in VERY late (sshhhhh....) okay, it's not a secret...everyone knows it!

i had a similar experience with swimming as kristen/violahen did, but not quite as severe. dr. grubb also suggested water therapy and i too was super-excited. at first i didn't want to get in a suit though, but then i got into it!

i found a pool that was warmer (arthritis standards) which helped. i LOVED being in the water and how it made me feel. i felt so free and could move and i loved it. but, then when i got out? poof! there just was too much to do by the time i got showered quick and tried to get my hose back on! too much. or, i would go in the evening as the very last thing i did before winiding down for the night so that i didn't have to put my hose back on...but, then, i had to be reclining the rest of the evening and i found it so frustarting b/c all i could do was eat dinner, go to the pool and then rest. i couldn't call a friend or do anything in the evening. i was willing to do this if it would start to improve symptoms in the long run. but, i stuck it out for 1 1/2 years (i think that counts as the college try . i started out going for like 2 minutes and never got past 15 or 20 of just gentle moving. and i never started to feel better symptom-wise after getting out of the pool.

i do miss the feel of being in the water and i think it is such good exercise. but, right now, i went back to what made me HAPPY. and i think that matters too.

i like to do yoga and walking the best. but believe me...on days like today i only made it to the mailbox and back. every time i relapse i have to start over again. walk to the corner. walk a little farther. i've never gotten up to more than maybe 20 minutes and that is rare. a miracle is walking a mile. i am not complaining as i know that i must be grateful that i can do that.

i don't do any housework-type stuff, but when i lived in my apt. i did count cleaning the BR as exercise! and stairs! whew, they are bad!

the yoga suggestions were good too. i like the jon kabat-zinn mindfulness yoga cd b/c it is VERY SLOW. and i still can only do a few minutes of it.

so, i have a very long ways to go and find it very frustrating b/c for me i can't every maintain. it is one step forward and two steps back.

i am sure you find it hard as you were once a runner. and stacey was a dancer and angela too. it is hard to go from being so at one with your body in those activities to not being able to do them at all. yoga is the closest thing to dance for me, but it will never compare.

okay, this is really long. can you tell i am trying to distract myself from the gallbladder spasms/????? please, please let it hold out a little longer!

goodnight.

emily

[MomtoGiuliana]

Emily

I don't know for sure why we have this diurnal cycle. I have read, I think I am remembering this correctly, that we retain fluid better later in the day b/c of a natural hormonal cycle that includes cortisol fluctuations--cortisol levels are naturally higher at the end of the day? I might not have this exactly right! But, it has to do with blood volume, in any case. When I was very ill, I remember always looking forward to that window of time between 4 PM and 8 PM when I would feel well enough to sit up for awhile and eat a proper meal and feel 50% human, at least.

I am sorry that exercise hasn't helped you much yet. I think it is good to keep trying, without pushing yourself and ending up in a another relapse.

Hope you got some relief from your gallbladder pain and good sleep last night.

Katherine

[BuddyLeesWife]

Here's a yoga site that has stick figures demonstrating the different poses and vinyasas (series or flow of postures).

http://www.yogasite.com/postures.html

[Guest Julia59]

The trouble with swimming for me has been the heat of the pool. I can't handle it at all. The temp has to be lower then the arthritis standards. But that's not the way it works. They don't modify the temperature for one person.

I'm not just limited from POTS, but also from my upper spine/cranial instability.

I getting a stationary bike from my mothers house-----and i'll be riding that. Then i'll get weights for my ankles and do leg lifts while lying on the floor.

That's it for now.

Julie :0)

[Miriam Poorman-Knox]

Hi-I"m Miriam and this is something I do Know about!!!YEA!!! First do leg exercised in bed, Leg lifts crunches etc. Then add some cxardio and weightd. Cross training is the key to potts. MAKE SURE that after you finish you go to the floor and stretch for about 10 minutes, as this is the time your BP will drop. 30 minutes is all you need. Make sure the cool down-even id you don't feek you've done much is done. This will help in muscle tone. Peace Miriam

Edited January 18, 2005 by MightyMouse

[lalalisa]

Hello everyone,

I was actually out of town last week and didn't have access to the internet......what a blessing it was to come back and see all of your responses!

Thanks for encouraging me to start slowly and to just try something - anything is better than nothing I suppose!

It's so wonderful to hear about your stories of failure and victory because it encourages me to keep trying until I find what works for me.

Last summer I was able to walk a few times a week. Lately I have become really de-conditioned though and it has concerned me. My husband attends seminary here in Louisville and I have access to there pool. I think I'm going to give light pool excercises a try.

Thanks again for encouraging me, I am so thankful for each of you!

Lisa

[Meghan]

Last year, right before I was diagnosed, I couldn't work out at all. But recently, with my doctors permission, I have started exercising every day. I go at night (I tend to feel better at night too) and run on the elliptical for a half hour. I go at a moderate pace, and keep my water close at hand! I have been doing well with this. Although I am exhausted afterwards, I feel like I am doing something good for my body. I want to keep as conditioned as possible, as I have heard that it helps people with POTS.

When I was going through a hard time with my POTS I did Pilates. It wasn't too strenuous, and you are on the floor, which is nice.

Anyway, I would just enourage you all to do whatever you can, even if it doesn't seem like much. Remember to listen to your body and don't push yourself too hard!

Hope you are all feeling well!

~Meghan

[lalalisa]

Thanks! Pilates does seem like a great idea to do on days when I don't feel good enough to leave the house.

Thanks for cheering me on!

Lisa