For How Long And How Far Can You Walk?

[Canadiangirl73]

I was wondering if many on here are able to walk long distances. I'm mostly housebound a walk short distances around the house. When I go out I have to use a wheelchair since the crippling chest pains and shortness of breath kick in very quickly. I was actually in cardiac rehab earlier this year so I know I can walk between 120 to 180 m before my symptoms stop me in my tracks. Wish I could walk for hours like I used to!

Thanks!

[futurehope]

May I suggest that you do not look at the answers to your question? The answers will be irrelevant for you. You will need to focus on yourself and your situation.

People on here have differing reasons for their POTS problems, so reading how far someone can walk will not really help, since the reason for your problems may not be the same as the reason for theirs.

Maybe you just want to know if there is improvement possible after needing a wheelchair? My suggestion is to always assume that there would be room for improvement, unless a physician gives you a good reason why not.

I thought it would be a bad idea for you to compare yourself to another person on this forum. Do your best to remain hopeful. Reading others' responses will not help your situation. God bless.

P.S. If someone on here is able to walk long distances, in all likelihood, they are no longer frequenting this forum because things are going so well for them.

[hippychic258]

Hello I can walk about 10 steps tops which is an improvement for me since for 9 months I couldn't walk at all.

Always keep hope and know that you can get better even a doctor tells you different.

Edited November 24, 2012 by corina

[Canadiangirl73]

hippychick - I'm glad things are improving. I remember reading a while back you were completely bedridden and unable to sit or stand. Good to hear you can take a few steps!

futurehope - I had all but good intentions when I started this post. I'm sorry if it came across as a way to compare myself to others; that was not my goal. However, as soon as two people share thoughts, ideas, experiences and struggles chances are they will either find similarities or differences, and there is nothing wrong in either case. You are right: some have left the forum since I started reading it because they got better. And I do know for a fact that everyone's case is unique. However, I also know that some are still on here and are able to jog, go shopping and work. Maybe I should have been more specific in my post and asked if those people gradually built up to that activity level, was it medications that helped them, etc. Indeed, I won't "gain" any immediate benefit from others' answers but my post is no different than asking if one is still able to drive, exercise or work. The only "benefit" could be attributed to learning from others' experiences and grab tips along the way. Also, it just makes dysautonomia, something we all have in common, a less lonely place...

[Jan]

I used to only walk around the house and had a handicapped sticker so i could even run into a store for something, I had a cane chair so I could sit when I needed to. A doctor at the Mayo said I needed to retrain my body to walk and that by avoiding walking I was making myself worse. This may not be true for everyone but it was life changing for me. I started very slow and now I can walk for up to an hour on a good day, depending on the temperature and where I am and how fast I walk. Standing in one place is still the hardest thing for me so check out lines can be a little difficult.

[icesktr189]

I can force myself to walk a distance but I won't be cognitively there. I will get adrenaline surges, feel drink, turn pale as a ghost ect. However, if I actually want to enjoy myself and be present, I use a wheelchair.

[SpinnyC]

It took me about a year and a half of cardiac rehab (and being on meds that actually helped) to build up to walking a mile. And honestly I saw the most improvement after I was on the meds. It was a pretty slow pace (about 35 min of walking) and I could only do it on good days. But I could do it! Then I got a cold back in September and that knocked me down to only being able to walking between a half or 6/10th of a mile. And I'm still not able to walk for the 35 min I could before, even at a slower pace. Since my docs say to push as much as possible- if it's a short trip on a good day I'll try to walk when I'm in a store running an errand. But if it's a big store and/or a bad day I'll use a motorized cart... or I won't go at all.

[Katybug]

It really depends on the day and in large part, the weather. Sometimes its only enough to get the essentials like the bathroom and food. Other days I might make a two mile walk on the flat walking trails at the park with the dog.

[SeattleRain]

July/August - getting up to shower, feed my dogs and myself was torture - especially going up and down stairs.

Now, I can force myself to be more active but since standing up is so uncomfortable I tend to avoid it.

Today I went to the mall and walked around for an hour (a lot of walking) and was able to pull it off without any major attacks - but my HR went up to at least 150 a couple times just standing there.

It's amazing how some of you have to use a wheelchair. I guess I should be thankful for not having it that bad...

[Tachy Phlegming]

I walk and I can go pretty long distances (and I frequent the forum). I would not do it in hot weather. Under those circumstances, I think maybe I could keep putting one foot in front of the other but well, if I collapsed, then I couldn't... and if my pulse were somewhere between 120-170 it would be dangerous. (But I've never had "stamina" anyway and it's not power walking).

As far as wanting to compare, in your situation, I think I'd feel compelled to ask on this forum.

Yes, people on here probably are sick due to a few different causes. But there is also the question of presentation. Sometimes, the same disease can look pretty different. Even when you are more severely ill, if you get a real sense that someone on here has something pretty close or that a particular treatment sounds right, sometimes that can go a long way to getting you closer to normal.

[puppylove]

It so depends on the day. One day I might have trouble getting off the couch and the next day I can walk my dogs around the block. I can never make plans because of this...:/

[Relax86]

In January I needed help to the bathroom; today I can walk indefinitely to do most of my activities of daily living (work, shop, socialize). I do have fatigue limits and if I'm tachy I slow my pace but I don't stop. I also had to do a re-training because the more I sat the less I could get up. I also had noise, light and smell sensitivity and I had to re-train to tolerate those things as well. My experience was when I did push my body slowly and carefully I had an increase in symptoms that would lead to an increase in tolerance. Is that confusing?? If I used my treadmill for 15min on Monday I would struggle with tachy, breathing, internal tremors, ear pain, stomach pain later, but on Wednesday I would have a very low symptom day. So there was a payoff with a little push. I don't have any medical reason to not try. I don't know what type of POTs I have or why I have it. I had cardiac clearance. I am 85-90% better since my crash in January of this year. I look at the forum less, but still read b/c I really want this to get better but more importantly I don't want it to come back. I am grateful for my recovery ~ keep the faith.

[songcanary]

I used to walk my dogs three miles in the park nearly every day. When I got sick, I remember telling my doctor that I felt like I was watching myself die. And I was afraid I would never see that park again.

Two years later I am back at the park and am grateful every day for the progress. Some days I still can't believe it. There is hope.

[HopeSprings]

Like others said, it depends on how I'm doing that day. Over the summer, I was able to walk around the Bronx Zoo with my children. I surprised even myself. Then there are days I can barely get around my house and a walk down the block would be torture. I wonder what happens inside the body that causes these highs and lows.

[MomtoGiuliana]

I definitely agree this is very individual. How far you can walk I suppose can be an indicator of how severe your POTS is at the moment. For most of us, POTS waxes and wanes. When I was severely ill I could not walk more than 10-15 steps at most, at a time without disabling symptoms. Now that I am "well", on normal days I can walk for hours.

[Dizzysillyak]

I have pem (post exertional malaise) so I can get out and walk for hours at a time one day but I'll feel

like a zombie the next day or two or three.

I used to have a motorized cart because I had ataxia and fell into things all the time but that appeared

to have been from gluten. Thankfully that's been gone since Sept 2006. At times I wish I still had one

tho because while my legs are ok, my brain isn't all there.

I just had the opportunity to test building up my endurance (dog sitting for 10 days) and found out that I can push through

PEM on a physical level but not mentally. My brain just won't work if I've done too much. Thankfully

dogs don't care if you're not all there. ; )

When

I had the chance to go back to resting, I felt a calm that I hadn't felt in weeks. I was happier and got my

sense of humor back too.

Just a side note .. One thing I love about this msg board is how honest and helpful we are towards

each other. I've learned so much here. Thanks .. : ) ... D

[kitt]

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[imapumpkin]

Canadiangirl, there is no need to apologize for having questions for the rest of us. We all want to know how other people are handling an illness that is debilitating. I know that it really helps me to have reassurance from others that it is possible to feel better than I feel right now, and its not about comparing situations, it' about finding support from others who know what you are going through when most people don't understand our conditions.

I can walk very short distances (to the mailbox and back, for instance) and on a very *very* good day I can go into a pharmacy or a small store for a short amount of time. Other days I have to save all my energy for standing in the shower.

[khaarina]

Before I was started on Midodrine I could technically walk about a block (as long as I didn't stop and stand still) but then I would be sick for a couple of days, so it wasn't worth it. Now, as long as I don't forget to take my medicine on time, I can walk a lot more and I don't usually get sick, just a little winded and dizzy but that would pass once I sat down for a few minutes. I find myself looking for benches and chairs wherever I go now because I know that I will probably have to rest. For example: I can go with my husband to the grocery now but at the end I sit on a bench while he does the checking out.

[looneymom]

Do what your body will allow you to do. My son was bedridden for several months and he had to start by doing exercises in bed. Do your best to stay well and avoid sick people with a cold or virus. He is now able to walk 10 to 20 minutes on a good day. He is not able to do this everyday. He rotates through a different type of exercise program everyday depending on how his body feels. For instance, he might sit on a posture ball and play on the wii, which works on upper body strength ( games like boxing or tennis, fruit slicing on xbox). Exercising can be boring but it is essential for POTS recovery. Listen to your body and don't feel bad if you have to take a day off.

[Lemons2lemonade]

Before i got on the right medication regime i could hardly walk 50 feet. The day before yesterday, i was on my feet walking around in a museum for 2 hours. Walking is hard, and difficulty depends on the day, but mostly walking is not a problem for me anymore.

[SoliDeoGloria]

Yup...all depends on the day and the weather and the number of triggers that are affecting me at the time. It ranges from crawling on my hands and knees to get to the bathroom, to walking (on level ground) for about an hour. Never a dull moment...and I mean that with all sincerety.