Exercise Question

[GingerA]

I was just wondering if anyone has built up their exercise routine to the place where they could do exercise standing up. Before I got really sick I was walking 3-4 miles a day. I really loved it but once I started getting sick I could walk for 1 day then be in the bed for 3! I really miss it but I am scared to try to do any major walking. In the summer I could swim but now I have nothing aerobic to do. I can't afford to buy a bike right now.

Any tips? I am determined to get better in 2012! At least as much as I can.

[Katybug]

Hi GIngerA,

I am now able to walk for about 40 mins a day. I started at "0" over the summer and worked up to 40 mins. I was peddling on the recumbent bike in the house and was at 20 mins on the bike. I started trying to walk a few days a week for only a few minutes. I slowly increased my time as I felt my symptoms allowed and also the frequency. My most telling symtom is my chest pain and feeling like a lead weight is on my chest. When I don't have this feeling as I am approaching my house, I know it is time to increase my walk time 3-5 mins. The thing I have to be most careful about is this: When I am moving, I am relavtively ok as long as I don't go too fast...a moderate, consistent pace is good for me. But, when I stop, I can crash because my muscles are not pumping blood evenly throughout my body anymore. I also tend to start to feel like I am overheating when I stop (for some reason this must be linked to the cerebral perfusion). Right now, since it is cool, I sit down on my front steps for a while to let my blood redistribute and cool down before I go in the house where I will be less active but potentially on my feet. It seems to help to give myself the adjustment period at the end. There are days when I have to walk less than 40 mins because my symptoms are worse but I consider any day that I can take any length of a walk a blessing since I couldn't do it at all just this past Sept. I have been on a little downhill slide lately, but I have pushed to still keep the walks up every day even if they are only 10 - 15 mins and I feel like it has definitely helped me from going all the way back to where I was in summer/early fall.

Katie

[JennaC]

I went from using an electric scooter to walking and other forms of standing exercise in a similar manner as Katie. After getting treatment for gastroparesis in March I started feeling well enough to walk around the block and I progressed slowly from there. At the gym today I was able to do 20 on an elliptical thingy and 10 minutes of rowing.

[maggie]

I also found the key to getting back up on my feet was working slowly. I was in a wheel chair for eighteen months and just couldn't get out of that thing. I was in the hosptial for some reason and the woman I roomed with was in great shape and I asked her about my condition. She offered this: she instructed me to walk one minute per hour every day until I could do that consistently then move it to two minutes per hour a day. That is what got me out of a wheel chair. I then started riding a recumbent bike for three years, I just couldn't do that anymore, so I started dance lessons, very slowly. I started with 15 minutes and am now up to 30 to 45 minutes depending on the day. I love dancing, I'm on my feet, gliding across the floor. I to loved to walk before pots came along and would walk for miles. Now dancing for 30 minutes is as fun as walking was. I hope you find a way to get back to some form of exercise that you can enjoy. All the best.

Maggie

[GingerA]

Thanks everyone for the advise. I am determined that 2012 is going to be a better year.

[Maiysa]

Hi Ginger,

I don't have POTS, but autonomic neuropathy, I'm extremely dizzy and have orthostatic intolerance and episodes where my blood pressure gets stuck on high and I black out, so I understand a bit of what you are dealing with. Anyhow, before this terrible situation, I did light 45 minute weight lifting 3 days a week and daily bike rides, hikes, yoga and tons of walking. I was very athletic. For the first time in 5 years I got on my bike in late 2011. It was so exciting!! I never dreamed I would be able to do this. But I was so so so dizzy at first. It scared me terribly. But luckily I had a patient friend to go with me and a helmet was mandatory!!!. I had tried the treadmill and that was like walking drunk. It was awful. I tried at least 12 DVD's, sad but true, they were too hard and I bought a pilates machine, that was the worst. It hurt my back and neck so much. I was so discouraged. But the bike ride was easier than all the above, but I don't feel I should be riding my bicycle around town because I don't know what my immune system is going to do, so I went on Craig's List and bought an upright stationary bike. You can find them reasonably priced right now since many are getting rid of them this time of year to try new equipment. I feel the more I use my stationary bike the stronger I am getting, but it is very tricky at first. Of course you have to ask your doctor if this is okay and if you do try this with doctors consent...make sure someone is there when you are starting out and don't ever ever over do it! It can be dangerous and I don't know your situation, so of course be careful. Anyhow, I have had a little bit of a set back this week and am a little frail to bike, but hopefully I will be back up on it soon. But it has given me so much hope! With these conditions everyone is in a different place with their activities, so if you're not there, don't let that discourage you, but check with your doctor to see what would be best for you. Stationary bike is what my doctor recommended. It is my hope also to get stronger. I really feel just the short time I have been doing this, it has helped to push out a lot of the pain and stiffness and I feel slightly stronger. Also, mentally, it makes me feel so good to know I am at least trying. Five years ago, riding a bike would never have been any type of option for me. Things can always change. Let me know where you are at with your experience. Good luck in 2012 and I pray you can get stronger very soon.

[ramakentesh]

Exercise definately helps. But it can take a long time if you are really sick before you notice any benefit. For me at times I felt like it was making me worse at first. I did all my exercise orthostatically and Ive always done the 'push through' thing which annoys my wife because then im wasted afterwards LOL.

Im annoyed right now because two weeks ago i was running three times a week and I have nice leg muscles that arent going to get as much love now as ive just relapsed I can literally go from 99% well to 0% in the space of ten minutes. I always wonder why I can get so sick so quick yet cant improve at the same speed lOL

[Katybug]

GingerA,

I do not use a full recumbent bike...just one of the peddlers that you use sitting in a chair. It cost me around $50 ( cause I couldn't afford the real deal either.) My POTS doc said it will accomplish the same thing, so maybe that is a more affordable solution for you.

[Serbo]

built up from 0 minutes walking per day, up to 2/3 hours per day occasionally.

i could literally walk for 5 minutes initially and then built up very gradually. May not be able to do a couple of hours every day but try to do at least an hour. it's taken about 10 months.

I built it up daily, almost minute by minute. Was very very hard to get to an hour, like learning to walk again! But then once there was easier to build on.

The only pointers i coud offer is walk daily if you can, whatever you can do. Even if it's just doing circuits round your living room slowly. i Still pace round my estate now, even just my road. helps build confidence if you are nearer to home i found. also i basically bicep curl a 1.5 litre water bottle when im walking from arm to arm. I figure it pumps blood to the arms and stops pooling, but i think even squeezing a ball would do it.

Listening to an audio book helps to as it keeps your mind off it to some extent which is good. easier when you get lost in a book and go in to autopilot.

1 other thing, it helped me a lot to look at the floor initially. not good posture but it made me less dizzy.

[HopeSprings]

What is a recumbent bike? Everyone keeps talking about this. Is this the same as a stationary bike? I have one of those collecting dust in the basement - maybe I should get on it. Would that be good exercise for us or no good because you're upright on it?

[Katybug]

Hi Naomi,

It is not the ordinary stationery bike (although it is stationery). It is one of the stationery bikes where your legs and feet reach out in front of you instead of hanging straight down. So, your position in a recumbent bike is closer to that of being in a recliner. This helps prevent triggering orthostatic symptoms and makes it a bit easier to exercise for those of us that have pooling issues.

[ramakentesh]

The only pointers i coud offer is walk daily if you can, whatever you can do. Even if it's just doing circuits round your living room slowly.

thats what ive always done as well. If anything it just makes you start to believe and trust your body again.

[GingerA]

Thanks everyone. I have been moving slow but I have been moving!

[kayjay]

Ginger, for me the best thing has been water fitness classes. If I were a mermaid I'd feel great. You can wear a water belt and I suggest getting out of the pool VERY slowly. I am always sad to get out because I feel almost smart when I am chest deep in water! increasing leg strength is good for us so anything you can do and feel comfortable with is a good idea.

[GingerA]

Kayjay,

I know what you mean. I have an above ground pool in my back yard and I lived in it during the summer. However I live in a very small community and there are no indoor pools for miles. I absolutely felt better in the water. Maybe the basis of POTS is an undiscovered mermaid gene. LOL

[Chaos]

I'm a "Pisces" so maybe that's my problem...I'm "a fish out of water." LOL

[GingerA]

Maybe you are on to something. I'm an Aquarius! lol

[Katybug]

GingerA,

I just tried something today that gave me a bit of a work out while I was on the couch. I found some old dumb bells in the closet (only 3.5 lbs), so I did some bicep curls while I was watching tv. I also rested them on my thighs and did some alternating leg lifts (held them on my thighs with my hands). One of my issues is that my muscles feel really weak all the time now, so I thought this is a way to get some strength back without causing any orthostatic issues and not spend any money (plus it made me feel better about watching tv for the afternoon cause I didn't feel too great.) I actually felt a bit better after I did it...I think maybe it made my circulation a little better and got some oxygen flow going. If you don't have any dumb bells, you could try it with canned veg or soup.

[ramakentesh]

I findc moving around definately helps a lot. But one needs the energy to do this all the time LOL.

[GingerA]

Katy,

That is a great idea. I will try it. I was also looking on some sights for aerobic exercise to do with out standing and on tip was to simply put on some music and "dance" while sitting. I sat on the couch and "danced" with my feet up while my 3 year old danced around the livingroom. It was great but I was tired after. It got him moving too. I worry a lot about teaching the boys about being active when I can't be. Most of their mommy time includes watching movies and reading so this was a great change.

[Katybug]

That's great GInger! Just do little amounts at a time and you'll eventually get there. Its great that you danced with your son today!!

[Chaos]

When I was in school I remember we had to do a video exercise program for wheelchair bound patients. It was an "aerobic" program for paraplegics. I still remember how hard it was and how surprised I was that you could work THAT hard (cardiac-wise) while sitting down and only using your arms. I was sore for a week afterwards. LOL

[Maiysa]

Update on my earlier post on exercise. Don't over do it! I think I over did it and now I'm having a bad dizzy flare and fever. Ugh..... Anyhow, this happened right after my longest time on the stationary and I think I got overheated. I'm just guessing, but I don't know why I just got knocked in the dirt this time. It was what I was doing a few hours before the flare. So don't over do it.

[lgtaylor100]

I agree. I felt great in the pool this summer. Not the same benefit from an indoor pool. As I understand it the pressure of the cool water vasoconstricts, but the warm water vasodilates.

[GingerA]

So sorry you are feeling bad Maiysa! I have had 2 bad days as well but it is so easy to fall into that trap when you are feeling better. I am terrible at over doing. I had a good friend point that out me just yesterday. Learning to pace myself even when I have a good day is one of my biggest challenges. Hope you feel better soon. PM me if you need to or if you just want to vent.