Boy, I Can Sure Walk Far!

[janiedelite]

I've been pushing myself this summer and have been walking most days for at least 2 miles. And yesterday I HIKED for 6 miles! On warm days, I wait til 9pm or so when it's under 70 degrees F. I usually bring my seat cane, leg and abdominal compression, sometimes the cooling vest, and hubby, too. I drink lots of fluids before and after. Just don't ask me to stand still!

So can anyone else here relate to being able to walk long distances? It seems like such a contradiction when I feel so good walking in cool weather, but don't ask me to stand or even sit very long. As soon as I stand still for a moment here comes the nausea, dizziness, crappy feeling we all know and hate.

[Mrs. Burschman]

I can tolerate walking really well, as long as it's not too hot. That does me in.

[juliegee]

YEAH- You go girl!!!! That just strengthens your leg muscles and helps them better return blood to your heart. And, yes, I can relate. I'm great as long as I'm moving. Standing still, especially in the heat, is a killer for me. Long distances are no problem. I'm training for a half marathon now

Keep up the great work-

Julie

[janiedelite]

I'm training for a half marathon now

Wow! That's so awesome!!! Yes, I find that when I walk at least a couple of miles each day my OI symptoms are slightly improved. Least year I didn't know what was wrong with me and was pretty much housebound. But taking precautions, I'm really finding that I can walk far when the temp is cool.

Thanks for the encouragement!!!

[erik]

Kudos!

I'm a solid walker too. I've got a water carrying backpack, which I find to be essential. Loaded with ice & water it keeps a constant cool feeling on the back and a solid supply of liquids (water or water+NUUN now) available with a hose dealio. Fill it light and it's light... fill it full and you get a little extra upper body/back workout and plenty of water!

I make sure I'm hydrated before a venture... then down 2+ liters upon leaving and have a 90oz capacity in the backpack bladder. Sometimes I'll finish it, sometimes not. Today I went without the backpack and came back 5 lbs lighter (water weight of course).

Today was without caffeine to dehydrate me... but at other times I pit caffeine for energy against constant water flow for hydration and it balances out okay. Without the backpack, I couldn't do that very well and caffeine would be a bad option except for short stuff. When I stop, I sit or lay down immediately... or do the "squat maneuver thing" which stretches the lower back (my weak point) and gives some blood flow for a bit (but get up slowly

By contrast, something simple like standing in line can trigger a feeling of impending doom (worst case, not always) so I too get symptomatic benefit from moving, like you! I think we here are super athletes no matter what we do... we have to fight and manipulate our bodies as much as a triathlete.

[Maxine]

Keep going! I'm so glad you can do this!

Everytime I try to walk far my heart flips out and it gets irregular. I have been afraid to try again. I was up to a mile in 2002-2003, but had the heart issues and quit. If I try to go fast it's worse. I should have tried walking while I had the implanted cardiac loop recorder in. I guess I would just get too worn out just from my usual daily functions.

I wish I could take long walks again--------I loved it. I simply have to get back into the pool.

If I go to Costco or the mall, I'll walk so far and my switch just goes off and I have to stop.

Maxine :0)

[janiedelite]

That's a great idea about the fluids in a backpack... but I don't know if I could carry the extra weight yet. Sometimes I have hubby carry my spare bottle.

Yes Maxine, I understand how walking like I've been is just NOT an option for many people on this site. I think Erik put it well when he said

I think we here are super athletes no matter what we do... we have to fight and manipulate our bodies as much as a triathlete.

When I was housebound last year, I would have my hubby drive me around town while I reclined in the passenger seat so I could feel the air and see some scenery. I don't know what the future will hold, whether I'll get better or worse, but I'm so thankful for the good days that I have now. On the bad days, I'm usually too sick to care about much.

[potsgirl]

Way to go with the walking! I truly believe that if we all do the best we can at our own level of exercise, it can only help us in the long run. For those who are bed and chair-bound, even lifting a few light weights helps, or some leg lifts if you're able. Whatever you do, kudos!

I have the same experience that I can walk the treadmill for 2-3 miles, but am totally out of breath walking up a flight of stairs or trying to stand in line for very long. It doesn't seem to make sense, does it? Also, I can't walk as far say, in a crowded mall where there's too much stimuli going on around me. I usually take my wheelchair there. Hiking is also difficult if there's an incline - I haven't tried it in years. I'm trying to work on increasing the incline on my treadmill, though. I always drink at least 20 ounces of NUUN water during my workout.

Cheers to all!

Jana

[pat57]

thankful,

I've experienced that for years also, but to a lesser degree. To stand still made me feel weak-heavy eventually dizzy and collapsing. I could walk forever. I was put on Pristiq and now I can stand still. Its an obvious benefit. Pristiq increases neuropinefrine. I checked your profile and saw that you have elevated neuropenfrine upon standing. I'm sorry to make this about me but I wonder if you can explain the connection of neuropenifrine and standing still.

thanks..........

[villen]

oh yeah! count me in:) I` ve just walked for over an hour, and when we got to the videostore, the potssymptoms started when I was standing while looking for a movie to rent. So weird and annyoing, but I?m glad I?m able to walk this far on good days. Keeps my weight down, my legs strong and improves circulation, and generall feel better:)

I love the autumn- perfect temperature, fresh air and loverly colours outside! (I live in northern Europe;)

[janiedelite]

I wonder if you can explain the connection of neuropenifrine and standing still.

Norepinephrine vasoconstricts, and it makes sense that you feel so heavy and can collapse if you don't produce enough norepi in response to standing up. I have problems with pooling, and you can see my arms and legs turn purple whenever they are below my heart. But my body also produces a bit too much norepi in response to being upright. For me, this causes high BP, migraines and flushing (because too much blood is shunted toward my brain), chest pain, etc. It's wierd that I can both pool and over constrict at the same time. One of the byproducts of having too much norepi for me is too much constriction and I have problems with raynauds/frostbite-type symptoms in my feet. Mayo told me to decrease my norepi production by working to increase blood volume with fluids and salt, and trying to correct pooling with compression. They believe my excessive norepi is solely my body's response to trying to keep blood flow to my brain while I'm upright.

There are some POTS folks whose problem is not pooling, but solely have too much norepinephrine. They are the truly hyperadrenergic POTS people.

I hope I didn't confuse things more. Please feel free to share about your experiences.

Thanks to everyone for their responses. It makes sense that for the most part, us POTsies do better when our leg muscles are working to pump blood back up to our brains. It's just odd because when I tell folks how far I can walk they kind of look at me sideways like "Wow... you must be getting better!" I am SO THANKFUL to everyone on this site who shares about how they cope with their symptoms. You guys have helped me get some function back!!!

Unfortunately, I'm having really bad sciatic pain today from walking too much (I think it was the hiking) . So I'm icing and resting today. My lower back has never been the same since the car accident in 2006 and the hip surgeries.

[janiedelite]

I love the autumn- perfect temperature, fresh air and loverly colours outside! (I live in northern Europe;)

Me too!

[pat57]

thanks,

makes sense

[erik]

Yeah. Autumn was an amazing season for me when I lived the midwest... I didn't know why but I felt like a new person then. Winter was decent too, except to go inside where people have the heat turned up so much and then I'm instantly slow as molasses (mentally & physically).

I saw a show on one of the "science channels" (not discovery... maybe natgeo???) about a "cold hand" device that some researcher was developing. It chills the hand, but not so much that it triggers the "cold pressor" effect. The idea is to help cool "core temperature" especially during exercise... for normal people it makes a difference in exercise stamina and recovery. Something like that might really help us "heat intolerant" / "exercise intolerant" folks keep more active.

[Mrs. Burschman]

I have the same experience that I can walk the treadmill for 2-3 miles, but am totally out of breath walking up a flight of stairs or trying to stand in line for very long. It doesn't seem to make sense, does it?

I'm the exact same way. Stairs kill me. I can walk for hours, but I hit the stairs, and my heart rate goes crazy. Weird.

[Mrs. Burschman]

I love the autumn- perfect temperature, fresh air and loverly colours outside! (I live in northern Europe;)

Me too!

Me three! Best time of year.

[erikainorlando]

I am way better at moving than standing still. I walk as well...if it is in the morning I can walk just about a mile. If I have been up for a while, I can't walk that far..I feel like I will faint and don't have control over my legs. I don't think it is the stamina for me as much as the beingupright that kills me. Depending on "when" I walk in relation to all other thingns makes such a difference for me!!

But yes...standing is always a trick!!

Erika

[janiedelite]

I don't think it is the stamina for me as much as the beingupright that kills me.

I agree!

[juliegee]

I have the same experience that I can walk the treadmill for 2-3 miles, but am totally out of breath walking up a flight of stairs or trying to stand in line for very long.

Me too, go figure! Sometimes after climbing the stairs to my son's room, I HAVE to sit down. I know I irritate him- he's 16 y/o- everything irritates him

[runningshoe]

I love to walk too. Sometimes I pay for it later in the day. STANDING IS THE WORST!! THe only time walking is uncomfortable is on the days when I feel lots of abdominal pressure/bloating - like today.

Keep it up!!

[Tammy]

Okay, weird thing is I don't fit into this category. Not sure why. I get super short of breath when I walk for more than a few minutes and I start seeing 'stars" and feel oxygen deprived too. Not sure why my body does this???

[valliali]

tammy, could that be a result of asthma? i notice you're on atenolol too - does it worsen the sob?

[blueskies]

Hi all,

In the 'old days' I used to be able to walk for miles and miles and miles. It was only when I stood still -- say at a crossing waiting for lights to change that I'd have problems of OI, nausea, spinning sensations etc. It got to the point that if I had to stop I'd sit down, even just sitting on the ground.

Then about 7 years ago I became unable to walk -- it seemed pretty sudden. I was reduced to barely being able to get around my apartment and I was like that for about 4 years.

Since diagnosis with POTS, over the past 3 years my walking has improved. I have tried to incorporate into my exercise program -- really focus on it but it's just not possible for me, not yet anyway. I flake out after a day or two of trying. However, on a day to day basis, I can walk around shopping centres, I can walk to the local stores, from a bus-stop, say, to my doctor's appointment. It's when I stop walking and stand still (shuffling from one foot to the other in order to 'keep moving' may as well as be standing still) that I get into trouble and I feel like I'm going to drop. Allowing myself to do this will make me feel pretty week for sometime afterwards. I can't walk for long distances like I used to but I'm doing pretty well in this regard. I probably go out 3 times a week on outings that involve some walking (that's in a good week). But I do stop and rest quite frequently. That has been the key for me. To make sure I stop and sit and rest frequently.

Sometimes I've feel like I'm going to 'drop' but (knock on wood) I never do, anymore. Then again I'm pretty aware of my current limitations physically.

smiles to you,

blue

[janiedelite]

Good for you, Blue, to keep trying to exercise some while staying in your limits!

Tammy, I'm sure you've seen a Dr about that shortness of breath and starry-feeling with mild walking. Did they say it was related to dysautonomia, or was it a problem with your heart? Either way, I'm sorry because it would stink to be so limited in activity.

[MomtoGiuliana]

Usually I can walk for hours if needed. Stairs are hard even on best days. Standing I can do ok most of the time, but can't always tolerate it.